MEpedia - User contributions [en]

ME/cvs Vereniging

2019-09-17T19:34:16Z

Guido den Broeder:/* Online presence */ significant following

[[File:Logo-me-cvs-vereniging.jpg|thumb|Logo of the Dutch ME/CFS Association]]
'''The ME/cvs Vereniging''' is a Dutch association for and by those suffering from [[ME/CFS]] and their close ones. The small letters for "CVS" in its name underpins that the association wishes the medical world to stop using the name Chronic Fatigue Syndrome, which it considers stigmatizing. ("CVS" is the Dutch abbreviation for Chronic Fatigue Syndrome.)

==Aims==
The association's objective is:

* To inform and raise awareness

==History==
The ME/cvs Vereniging is a continuation of the [[ME en CVS Vereniging]] which was founded 15 April 2005, later renamed to ME/CVS Vereniging. When in 2011 the decision was made to disband the ME/CVS Vereniging and found the [[ME Vereniging Nederland]] in its stead, some members and former members lead by [[Rob Wijbenga]] did not agree. In a separate meeting they chose to continue some of the old association's activities and to relax the membership requirements. Wijbenga became chairman. Since he lost his position on the board a few years later, the chair has remained unoccupied. Wijbenga has instead represented the [[Groep ME-Den Haag]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

The association now supports the 2018 advice of the Dutch Health Council, which defines ME/CFS as [[SEID]], and has tried to educate general practitioners with that document.<ref name="VWS_20190327"/>

==Funding==
Their funding comes from individual contributions and donations.

==Patient survey ==
In 2019, the association released a report summarizing the results of a 2017 patient survey.<ref name="ZorgVoorBetereBehandeling">{{Cite web|url=https://www.me-cvsvereniging.nl/sites/default/files/documenten/Rapport%20Zorg%20voor%20betere%20behandeling.pdf|title=Zorg voor betere behandeling bij ME|last=Corsius|first=L.|authorlink=Lou Corsius|last2=Crijnen|first2=B.|authorlink2=|date=Sep 2019|website=ME/cvs Vereniging|archive-url=|archive-date=|dead-url=|access-date=Sep 11, 2019|last3=Hogeweg|last4=Kuijper}}</ref> This report only included responses from patients who met the [[SEID]] diagnostic criteria, as these diagnostic criteria were considered consistent with reports by the Gezondheidsraad (Dutch Health Council).<ref name="ZorgVoorBetereBehandeling" />

==Online presence==
The ME/cvs Vereniging has a significant following on the social media, resulting in lively discussions.

*[http://www.me-cvsvereniging.nl/ ME/cvs Vereniging Website]
*[https://www.facebook.com/ME.cvs.Vereniging/ ME/cvs Vereniging Facebook page]
*[https://twitter.com/MEcvsVereniging ME/cvs Vereniging Twitter]
*[https://www.youtube.com/channel/UCNRE0hwYJl5B_RccCst5k8Q ME/cvs Vereniging YouTube channel]
*[https://www.youtube.com/user/WetenschapvMEcvsVer Their 'Science for Patients' YouTube channel]

==Learn more ==
*[https://www.me-cvsvereniging.nl/sites/default/files/documenten/Rapport%20Zorg%20voor%20betere%20behandeling.pdf Zorg voor betere behandeling bij ME] - 2017 patient survey

==References==
{{reflist}}

[[Category:Patient groups]]
[[Category:Dutch patient groups]]

MEpedia talk:Moderation and blocking

2019-09-17T19:09:57Z

Guido den Broeder:/* Please add */ also

== Please add ==

* stalking other users (following them to topics that don't normally interest you, reacting and responding to their every edit and post)
* repeatedly removing content added by another user, while ignoring their explanation of why the content was added
* not being here to build MEpedia (but instead only to annoy other editors, vandalize articles, etc.)
* disrupting a work-in-progress, especially on a topic where you are not knowledgeable (overtagging, copyediting to make it mean something else, removing text without discussion, etc.)
* attempting to impose non-existing rules onto other editors
* falsely accusing other users of ignoring rules

May add more. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 15:01, September 17, 2019 (EDT)

Also, I believe that every editor should get a chance to (a) improve their behaviour, i.e. they should be warned first (multiple times as long as there is hope), and (b) defend themselves, before (not after, that doesn't work) any moderating action is taken.

Always keep in mind what we are here for to accomplish and that, unlike on Wikipedia, the number of people both willing and able to contribute is limited. Except for the core principles, adjust the rules to accomodate the people that you really need, not the other way around. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 15:09, September 17, 2019 (EDT)

MEpedia talk:Moderation and blocking

2019-09-17T19:01:36Z

Guido den Broeder:se

MEpedia talk:Moderation and blocking

2019-09-17T19:01:09Z

Guido den Broeder:/* Please add -- ~~~~ */ new section

== Please add -- [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 15:01, September 17, 2019 (EDT) ==

* stalking other users (following them to topics that don't normally interest you, reacting and responding to their every edit and post)
* repeatedly removing content added by another user, while ignoring their explanation of why the content was added
* not being here to build MEpedia (but instead only to annoy other editors, vandalize articles, etc.)
* disrupting a work-in-progress, especially on a topic where you are not knowledgeable (overtagging, copyediting to make it mean something else, removing text without discussion, etc.)
* attempting to impose non-existing rules onto other editors
* falsely accusing other users of ignoring rules

May add more. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 15:01, September 17, 2019 (EDT)

Talk:Glossary

2019-09-17T17:47:46Z

Guido den Broeder:/* Split? */ huh?

The [https://www.mediawiki.org/wiki/Extension:Lingo Lingo Extension] would allow this glossary to be used as tooltips for the rest of the site. This would mean awkward words / phrases could go here and would not need their own page, eg ''diurnial fluctuations'' just means fluctuating during the day.
--
The [[Terminology]] page is in the correct format, so these pages need merging. The Lingo extension has been requested.

Do we merge [[Abbreviations]] into it too? Also I don't think there is much point keeping journal names as in Abbreviations - we don't normally refer to journals with abbreviations, and are creating pages for key journals that can be linked to instead, eg [[The Lancet]]. Thoughts? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:57, 15 April 2019 (EDT)

== Split? ==

The glossary now contains many terms that are only relevant to either ME or CFS, but not to both. Would it not be more effective to have separate glossaries? [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 21:43, September 11, 2019 (EDT)
:No. Users are unlikely to browse the glossary. It underlines words on pages where they are found so the user can get an expansion. It is a site-wide not a glossary for ME, so terms used in other illnesses or general research and medical terms will be here, and possibly slightly unusual or complex words for the average user eg iatrogenic, hypoglycaemia, p-values, biochemistry terms. The main idea of the glossary is to improve readability and to avoid having hundreds of stubs containing a 1-2 line explanation. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 10:51, September 16, 2019 (EDT)
::So why again are nearly all the links blue? Is this not a page for readers? It's in mainspace. By the way, you're not adressing my point. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 11:08, September 16, 2019 (EDT)
:::[[User:JaimeS]] [[User:Kmdenmark]] [[User:Sisyphus]] [[User:Pyrrhus]] I forgot this content was not merged with the [[Terminology]] (the tool tips popups page). Should I move the content not about ME/CFS out (as Guido suggested) - and put it on [[Terminology]] - although anything on that page cannot include links to other pages. Terminology pop-ups only appear when words aren't linked to another page, and many of these will be. Particularly the IOM report link, terms like somatic. The alternative would be to title the page as '''Glossary of ME, CFS and science terms''' or similar. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 12:35, September 17, 2019 (EDT)
:::::That's not what I suggested, thanks. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 13:47, September 17, 2019 (EDT)

Category talk:Patient groups

2019-09-17T17:29:32Z

Guido den Broeder:/* Split please */ dictionary

== Split please ==

Can we split this into e.g.

* patient association
* charity
* forum
* blog

as the differences are significant? [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 21:25, September 11, 2019 (EDT)
:It is already split into [[:Category:Blogs]] eg Stonebird, [[:Category:Websites]], and [[:Category:Patient groups]]. Some patient groups are not charities but are non-profits but they belong in the same category, foundations, etc. Unrelated organizations go in [[:Category:Organizations]] or elsewhere. A Forums category could be useful if we don't have one, but it would depend how many there are. There's little point create a category for only a few items. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:10, September 17, 2019 (EDT)
::I'm afraid that you have insufficient understanding of what some of these terms mean (non-profit, charity, association, organization, ...), and suggest that you grab a dictionary. It's really not possible to converse here when you mix everything up. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 13:29, September 17, 2019 (EDT)

MEpedia talk:Science guidelines

2019-09-17T17:06:39Z

Guido den Broeder:/* Minor suggestions from last update */ wrong section?

== Old ideas ==

Some possible ideas to consider:

1) Quality of references: should be peer-reviewed journal articles or reputable textbooks

2) In the absence of good research, anecdotes can be cited under certain conditions (what conditions?) so long as in the text of the article, the information is not passed off as an established fact and the source of the information is clear. For example, "some clinicians have observed...." or "many patients have reported...." There still needs to be an external citation.

3) Avoid where possible citing health blogs or other third party sources for information that is considered to be scientific fact, especially where a first party source (i.e., a journal article) is available. Blogs, forums, etc. *can* on a case by case basis be reasonable sources for anecdotal or observational information.

4) Where available, always report both negative and positive results. If you do a search for, say, muscle biopses in ME patients, report both the studies that found evidence of abnormalities and studies that did not.

5) Where possible, report information about the design of a specific study or series of studies if they help the reader to grasp the quality and reliability of the findings. For example you might point out features of the design that decrease our confidence in the outcome: small sample sizes, lack of controls, open label. You might also point out information about the design that increase our confidence: randomized, double blind, large N, proper controls, finding replicated. This does not need to be done in great detail but you might say, "Several small n studies have found...." Or "A large, randomized trial found......"

--[[User:Meaction|Meaction]] ([[User talk:Meaction|talk]]) 13:41, 21 November 2015 (PST)

{{collapse top}}
== Volunteer Slack? ==

Under the "Less is more" subsection, it says "go to the Volunteer Slack".
 What is a "Volunteer Slack"???
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:31, 14 March 2019 (EDT)
:[[User:Pyrrhus|Pyrrhus]], Slack is a technology that's basically a very fancy chatroom service; you can make a Slack for a specific group and then it offers the possibility of having different, easily searchable threads for different topics. I take it there is an MEpedia Slack, although I'm not part of it and don't know the Slack's name or who to ask for an invite, so eventually we should probably try to find out how users who wish to can join (personally I don't love using it; I find it overstimulating and would rather discuss with editors here, but it's good to offer different options as different people will undoubtedly have a variety of different preferences and accessibility requirements.) Meanwhile if you want, you can check out the tech at Slack.com though; the basic service is free, you only pay for upgrades (like storage if your group has more than 10,000 messages, etc.) Poking around, I do see an MEAction Volunteers Slack (meaction.slack.com) and you can sign into it if you have an meaction.net email address. But I don't know if MEpedia has a separate one or if MEpedia is a "channel" in that one; also don't know if you have to get an meaction.net email or if possibly existing members (or especially, moderators) can add send invites to others to join the Slack, if that is the right one. So many questions! Sorry I'm probably giving more questions than answers here! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:29, 19 March 2019 (EDT)
::Thank you so much [[User:Canele|Canele]]! That is very very informative. I prefer discussing things here on MEpedia too, but we desperately need to enable communication between contributors any way we can. I'll ask around to see how I could join. Now, whom do I ask? ''That'' would be a good question for the Slack group! ;)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:12, 19 March 2019 (EDT)
:::The best bet as far as I know would be [[User:JenB]], or maybe she can suggest who best to go to with MEpedia questions if it's someone else? (I'd also love to ask about either adding to the [[MediaWiki_talk:Captcha-addurl-whitelist|CAPTCHA whitelist]] or getting set up to take of that myself, which I'd be happy to do, just don't know who best to ask for the necessary permissions.) Thanks for any guidance! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:13, 19 March 2019 (EDT)
::::I’m now in the Slack group, so if there’s anything you want me to bring up, let me know. The CAPTCHA whitelist has already been brought up. Is the only thing needed there is admin privs to edit the file? Or is the CAPTCHA whitelist more complicated than that?
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:02, 29 March 2019 (EDT)
::::::Oh, thanks so much [[User:Pyrrhus|Pyrrhus]]. Yeah as best I can tell, it's just admin permissions that's required to edit that page and then appropriate URLs only need be pasted in. As Njt has pointed out, the best would be if we could set up a user right group that automatically turned off the CAPTCHA for trusted users (discussed further here: [[MediaWiki_talk:Captcha-addurl-whitelist#Regex_for_Whitelist]]), but setting that up is beyond my personal technological capacities, so until someone who is capable has the time to take up that project, I think granting someone who is around more (you, me, whomever) permission to add to the white list would go a long way to improving accessibility. (My personal opinion would be that whomever is delegated that authority should only whitelist the most rock-solid science and reference sites. Other kinds of sites are important to include on MEpedia but I've seen a fair number of places where they're not used in accordance with [[MEpedia:Science guidelines]] and I think it maybe wise to leave the speed bump up at least for now.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::[[User:Canele]] If you wanted to join Slack's MEpedia group you can email the info meaction.net email address, on contact [[User:JaimeS]]. Some discussion goes on in the Facebook group (linked to from the MEAction website) but not much. I have recently discovered that auto confirm by email address may remove the Captcha, fixing the email feature has been flagged up since there's a new issue with it. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 18:42, 29 March 2019 (EDT)
::::::Thanks [[User:Notjusttired|Njt]] for the head's up about how to join the Slack. I may do so later; I find the tech a little overstimulating so I like discussing here where things don't move quite as rapidly. Meanwhile though, that sure would be great if eventually there were an automatic user right to disable the CAPTCHA. I suppose one thing I would say is, my ideal world would disable the CAPTCHA after a user has made a certain number of manual edits (500?) rather than just after confirming their email address, because it's so easy for spammers to dummy up an email address, confirm it, and then go to town. On a site about science, I do worry about manipulation by folks with a financial interest. But, we'll wait to see what's possible, I suppose? [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::::That's a good suggestion on number of edits - could be put in the Dev queue. I would set it much lower - say 50 edits - the Captcha is easy to lookup for people so I presume it's mostly there to stop robots / automated edits. With automated edits I'm not sure how easy it is for robots to do the email confirm or if any have tried. Njt [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:14, 30 March 2019 (EDT)
::::::::Good idea, I'll add it to the dev queue! You're probably right that 50 would do the job for now. I know Wikipedia deals with folks that for-profit, not-necessarily-reliable sites are paying to go in and manually add many links to that site; I was thinking the CAPTCHA would be at least a speed bump for that. But no real reason to have it be so high until/unless that becomes an issue here. I assume once that feature is in place, it wouldn't be so hard to adjust the specific number. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:21, 30 March 2019 (EDT)

== Rename to MEpedia:Science guidelines ==

Any objection if this page "Science Guidelines" is renamed to "MEpedia:Science guidelines"?
 Since this page is about the MEpedia project itself, it really should belong in the MEpedia namespace. ("MEpedia:")
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:43, 18 March 2019 (EDT)
:I'm for it! (Again!) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 19 March 2019 (EDT)
::Done!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:04, 29 March 2019 (EDT)
{{collapse bottom}}

== Deleting "When should I cite?" ==

Any objections to deleting the "When should I cite?" instruction? I feel like it's already (and more accurately) covered in the preceding "If you can't cite it, you can't say it" instruction. Using ''Citing References in Scientific Research Papers'' makes sense for those doing primary research since original arguments/findings don't need to be cited--but here (I think) we want everything added to be referenced so that readers should be able to go check to see what verifies a given claim, rather than having to trust whichever random editor who made the change was actually correct. Right? Thoughts? (Sorry, tired, this might not be clear.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 00:38, 11 April 2019 (EDT)
:I’m not sure I understand, but I’ll tag [[User:JaimeS]] because she’s the Science Editor and she can give a definitive yes or no. As a general rule, I think we want to drill into people that everything needs to cited, even if we repeat our selves. Hope this helps.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:02, 11 April 2019 (EDT)
::Let me take another, more caffeinated crack at explaining (grin)! I'm worried that by specifying we must cite everything we get from other sources, ''Citing References...'' inadvertently implies some things don't need to be cited. Which is true for people publishing research or review studies--you don't need to cite ideas original to you--but MEpedia isn't (as I understand it) the place for folks to publish their own novel hypotheses: only things they can cite to another source.
::The other thing is that as UI/UX matter, the longer instructions get, the less likely folks are to read any of them. So repeating may have the opposite of the desired effect, unfortunately. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 13:31, 11 April 2019 (EDT)
:::Generally speaking, the rule of thumb is not to cite things that are considered common knowledge. Therefore, we would not have to cite every sentence of an article, or even every complete thought. I'll check the original article, though, with an eye towards this kind of misinterpretation... ok, I read through. I think that section contains important information regarding that you must cite not just direct quotes, but anyplace where you get an idea, even if you've paraphrased it. You'd be surprised how many people think you don't have to cite unless you've directly quoted someone's work! I'm ok with folding that in to another section if you think it's confusing.[[User:JaimeS|JaimeS]]
::::Ahh ok, thanks [[User:JaimeS|JaimeS]], now I understand what it's intended to convey and def agree makes sense to hit the "cite whether it's paraphrased or quoted" point. I'll see if I can make it sit with the "cite everything [unless common knowledge]"--maybe we can use the quote from that article in a footnote, for sake of concision/hitting the high notes as clearly as possible. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 11 April 2019 (EDT)
:::::Great, [[User:Canele|Canele]]! Thanks for that disambiguation, good looking out. [[User:JaimeS|JaimeS]]
::::::RE: "Common knowledge" - I think this should be made clear that it's general knowledge or common knowledge but not what an editor might consider common knowledge about ME/CFS. Many consider "always caused by a virus" as common knowledge for instance, or consider ME or ME/CFS as a "fatigue" condition. I may consider starting a page on Facts vs Myths to cover some of these. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:17, 15 April 2019 (EDT)
:::::::I did also think it might be good to give an example of common knowledge that it's acceptable not to cite, to help people gauge, but I had a hard time coming up with a good one. "Humans generally have two kidneys"? Better suggestions welcome! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:43, 15 April 2019 (EDT)
::::::::I actually really like the following quotation for citations: "Common knowledge... is widely known, undisputed and easily verified, and it generally cannot be attributed to a specific person or paper". It's a really accurate definition that would stop someone from saying "ME is caused by a virus" because they know it is, in fact, disputed, not easily verified, and is not widely known. Here is where that quote came from, and it may be a good source in general, because it also has examples of common knowledge and questions to ask oneself before we can tell whether something is considered common knowledge: https://www.scribbr.com/plagiarism/common-knowledge/. I think we should define common knowledge as per above, and then make the explicit comment that you can find examples of common knowledge and guidance as to what constitutes common knowledge by clicking here (with link to above).[[User:JaimeS|JaimeS]]
:::::::::: +1 to adding a definition of Common Knowledge to the text. The definition quoted by [[User:JamieS|JamieS]] on this talk thread was helpful in clarifying. [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:37, June 13, 2019 (EDT)

== Honorifics ==

I'm wondering about establishing a policy to standardize use--or not--of titles and honorifics (Dr., Professor, etc.) across MEpedia. I realize this is a challenge given the diversity of usage in different languages, fields, etc. Wikipedia deals with that by never using honorifics and only naming specific degrees and positions held (and only doing so the first time the degree or job is mentioned), and otherwise last name only (after the first use). But, I do see that for most readers of MEpedia, there's likely often value in having someone's title included each time that person is mentioned ("In 2018, Dr. So-and-so wrote a second editorial criticizing...") At the same time, I worry it can be confusing rather than clarifying when people who are MDs, PhDs, and DCs all have the same "Dr" in front of their names--it goes without saying that these are really different qualifications and I'm concerned about misleading readers about what a given person's qualifications are. That's compounded right now by variation within the project: some editors write "Dr. Klimas" every time, others "Dr. Nancy Klimas" once and then "Klimas" subsequently (or some other variation). [[User:JaimeS]], do you or others have thoughts on a rule for handling this to best communicate/contextualize scientific information for a broad audience? (In giving the Klimas example, I'm also realizing setting a consistent standard could also help us reduce unconscious bias.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:32, 13 April 2019 (EDT)
:I'm okay with having this be part of our general formatting. MEpedia 'really' has about 10 regular editors with a few people sweeping in once in awhile, so this will go a long way. However, it may be too much to ask or expect first-time users or someone going into one article to keep this in mind. We will either have lots of corrections to make or we'll have to let it slide sometimes. That said, if we choose a format, then the person's title or degree should be described in detail the first time in any given article (Dr Jane Doe, a professor of Immunology at the University of Y", and not again thereafter -- just using Doe or Jane Doe from then on. [[User:Jaime|Jaime]]
::Full title and specified credentials the first time, then only last name thereafter seems like a good rule to me. And yes agreed: for so many of these things, I don't expect new users to know them off the bat and it's really not a big deal if they mess them up. If anything honestly tidying that sort of thing (what WP calls "wikignoming") makes for a good task on foggy days. Just wanted to decide first what we'd like it to be. But that sounds great, I'll add it (as succinctly as possible). [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:04, 16 April 2019 (EDT)
::: I like that phrase: “wikignoming”. That’s my word of the day!
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 19:16, 16 April 2019 (EDT)
::::Ah, so glad I could share! The wikignome is a venerated figure on WP. We could incorporate the term more here--really helps emphasize how much value many different types of edits add to the project. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 01:26, 17 April 2019 (EDT)
:::::It's just occurred to me that using titles regularly can be problematic because they are changeable. Eg Dr Simon Wessely became Prof, then Sir. When referring to past work or doesn't seem quite right to consistently refer to someone's early work using their current title somehow. I generally use full name in the first instance on a page, and either last name or both names after - except with bio pages where title is relevant. Several pages will refer to several authors with the same surname too. This isn't a big deal to me. I see this as more a Manual of style or editorial thing since it's not about scientific understanding.[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:44, 22 April 2019 (EDT)

==Types of studies ==

This on ''in vivo'' etc is very long and not important. Hardly any research on ME/CFS uses these terms, and if they do they don't make them prominent.

I would prefer to remove this information, or to replace it with Clinical trials information - eg A case study is not a clinical trial, clinical trials will have a trial registration number, difference between Review articles, Editorials or Theories, and Research (eg research involves specific methods and results). [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 11:01, 14 April 2019 (EDT)
:Good idea! We could also make [[MEpedia:In vivo studies]] and [[MEpedia:In vitro studies]]--or just mainspace entries with those topics (honestly we should def do at least the latter, I will see about starting that today)--to offer here as "See also" but yes, I agree it's not among the main issues of science literacy for editing MEpedia well, and we could trim either to make the whole more concise/readable or to make space for other subjects. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:19, 14 April 2019 (EDT)
::I started the mainspace pages ([[In vivo studies]] and [[In vitro studies]]) but def, I can see the usefulness of also having project space pages in case anyone goes seeking more specific guidance on how MEpedia wants these distinctions described. So we could move the info over there rather than delete it. [[User:Notjusttired|Njt]], I'm sure if you have ideas about what should be included instead, they'd be welcome--you could post a mock-up here for discussion? (If you are up for it, no worries if not.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:43, 14 April 2019 (EDT)

:::That sounds good, although the way it's written suggests more suitably for studies involving tissue samples and animal testing - there's no animal model and I am unsure if there's is much that can be tested with tissue samples given the multi-systematic nature and the risk of trying to get samples from the key areas (brain and spinal column, just a little dangerous!).
:::What would be useful would be some of this [https://clinicaltrials.gov/ct2/about-studies/glossary glossary] - I was looking earlier at Phase 1 to Phase 3 descriptions.
:::Also to keep in mind is not to explain very short / simple things - I've requested debtors add the '''Lingo extension''' - it creates a glossary page and links it to anywhere the term is found on any page - so much could be added there rather than separately in Science Guidelines.
:::My 2 big issues with science guidelines are to get editors not to cite Wikipedia or use ME-pedia pages as citations (they should be links), and to get across that science writers publishing only online are often poor sources for science (fine for personal experiences or Articles to link to) - some terrible "science" out there written by a single professional and either not peer reviewed or almost no improvements made. '''Journals''' should be the main source in my view given the lack of textbooks on ME/CFS. Science Direct is also excellent to search for book chapters or topics not specific to ME/CFS. Some clinics have good articles but others are just terrible. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:17, 14 April 2019 (EDT)
::::To your first point, I actually think for instance the [[Bhupesh Prusty]] talk at NIH last week specifically discussed ME/CFS research that does isolate certain kinds of material, and the difference that can make in the findings (see [https://twitter.com/MEActNet/status/1114219970660052992 this Twitter thread]), but I totally agree with you that that is '''far''' more advanced science than the main issues the Science guidelines need to convey to improve the scientific value of MEpedia. Coming over from Wikipedia, I am accustomed to much, much higher standards for what can be included, but I understand where the [[MEpedia:About|mission statement]] is coming from about wanting to gather more than what's verified by review articles. To me the big challenge is getting people specify the quality of the source they're using. Like you say: is it one doctor's opinion? Is it some patients on a forum? Is it a peer-reviewed study? If it is, did have three patients or 300? Etc. That glossary is a really good idea. I don't know how the extension you mention works but I'm also happy to start mainspace entries for some of the most common concepts. For all of this, I'm not remotely qualified to write a textbook-level explanation, but I hope if I can get things started, it's easier for folks who do have the scientific expertise to add on, amend, specify. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:31, 14 April 2019 (EDT)
::::::Everything in that page would be cited anyway - e.g. from a medical dictionary, or a book chapter - science direct's website is excellent for finding book chapters. The page name defaults to [[Terminology]] and it needs particular syntax. 
::::::The huge issue with sources is that there aren't any textbooks on ME/CFS. Not one. All books are based on author's own views or research. Although editors really should be stating in the text where info comes from for single sources, e.g. Jason and Sunquist (2009) stated that... I also disagree with you on Wikipedia standards: the editorial / scientific standards mean anything even remotely controversial can be (intentionally) skewed by editors using extremely poor quality sources which count as tiertary sources because opinions and reviews are given greater weight than objective science - some tierary sources barely have any references. Skeptics (actually disbelievers) rule on Wikipedia and there is a bullying culture in evidence on some pages - all editors do not have equal rights or equal influence. Scientists get marginalized since qualifications don't count. The demographics of Wikipedia editors are not representative of society in general to say the least. Talk pages on controversial topics consist of unfounded accusations of using sock puppets (happened to Angela Kennedy), and I've seen editors regularly move content they don't like to talk pages to tie up other editor's time so it won't be included. We don't have edit wars here. We go for facts, not opinions. If a popular opinion has very weak evidence then repeating it often gives it more weight on Wikipedia. Craziness! Also some editors mis-cite sources - what looks like a good reference turns out not to say that at all. Wessely and Sharpe do the same in their own articles. 
::::::At the moment I think many editors just aren't seeing crucial pages like the Science guidelines or manual of style. I read all the welcome message and How to contribute when I first signed up, but only when an editor pointed out the Manual of style did I find it. 
::::::Editing massage: I'd like to change the message editors see before submitting to include links to Editorial guidelines, Science guidelines, Manual of style, and remind them that Wikipedia and blogs are not science sources, and that "if you can't cite it you can't say it". [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:13, 15 April 2019 (EDT)

== Equivocal versus neutral language ==

Wanted to seek more input about section on equivocal language. It seems to me that it's worth keeping "equivocal" in the title rather than [https://www.me-pedia.org/index.php?title=MEpedia:Science_guidelines&diff=next&oldid=55514 revising to "neutral"] because while editors should definitely describe findings neutrally, that's covered in the [[MEpedia:Editorial_guidelines|editorial guidelines]] whereas this is--it seems to me--making a different point about not overstating how definitive a finding might be. My concern for using "neutral" is that to non-scientists, saying something has been proven can seem entirely neutral ("neutral" to me mostly indicates you shouldn't say "shockingly, it was proven that...") On the other hand, is there a risk that telling people always to equivocate could result in people mischaracterizing results? It's obviously not appropriate to say a finding is equivocal if it's just not. Would welcome input on both best practices in science writing as well as how we can be best convey them to folks not yet familiar with those conventions! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:26, 20 April 2019 (EDT)
:Good point. I changed the wording only to try to simplify the language (improving readability). I'm open to other suggestions - or possibly examples? I feel the language used should be closer to "plain English" - short, simple, clear. I admit I had to lookup unequivocal and didn't make a great choice for an alternative word [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:38, 22 April 2019 (EDT)
::I put it in as equivocal very deliberately. Let's keep that word. [[User:Jaime|Jaime]]

==Important studies and works of age ==
What about listing these in a bullet points? Can we shorten the explanation to maybe 2 sentences. Also [[Holmes criteria]] introduced the term CFS - although somehow [[Fukuda criteria]] took over so this example needs changing. Key works in my view are:
* [[Fukuda criteria]]
* [[Canadian Consensus Criteria]] which are for [[ME/CFS]]
* [[International Consensus Criteria]] for ME
* [[PACE trial]]
* Wilshire et al analysis of PACE
* [[Ramsay definition]]
* McEvedy and Beard (1970) - mass hysteria
* Not sure what's best for biomedical studies? 2 Day exercise one?
* [[York Review]] or [[Cochrane]] unretracted exercise review - that brought in CBT & GET evidence or Original BPS trials eg Fulcher & White 1997

==Do not give advice ==
I have added this to clarify. It is especially relevant when describing treatment protocols or dose suggestions for medications. I added similar to the scientific guidelines. [[User:JaimeS]] [[User:JenB]] [[User:Kmdenmark]] [[User:Pyrrhus]] [[User:Hip]] [[User:DxCFS]] [[User:MEandCFS]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 09:56, 3 May 2019 (EDT)
:This would belong in the science guidelines, not the editorial guidelines. I'll copy this discussion over there.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 14:28, 3 May 2019 (EDT)
:: I agree wholeheartedly not to give medical advice. I feel uncomfortable with the pages that do. It can inadvertently cause harm. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 16:01, 11 May 2019 (EDT)

== "blocks of information" -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:27, June 13, 2019 (EDT) ==

I'm confused by the following "Do your best to avoid ... paraphrasing blocks of information". Would the correct interpretation of this be "it's okay to paraphrase a few sentences, but avoid paraphrasing large blocks of text. Instead, prefer to summarize the key points, and link to the source for readers who want details."?
:Paging [[User:JaimeS]]... :)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:21, June 14, 2019 (EDT)

===Re: "blocks of information" -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:11, June 26, 2019 (EDT)===

: I wouldn't recommend paraphrasing whole paragraphs (multiple sentences in a row). When people paraphrase chunks of text, it's often an uncritical repetition, rather than an integration of ideas. You can see more on this here: https://writing.wisc.edu/handbook/assignments/quotingsources/. Scrolling down to 'How to Paraphrase a Source'.

:::"When reading a passage, try first to understand it as a whole, rather than pausing to write down specific ideas or phrases... choose and summarize the material that helps you make a point...

"METHODS OF PARAPHRASING
:::"Look away from the source then write.
:::"Read the text you want to paraphrase several times until you feel that you understand it and can use your own words to restate it to someone else. Then, look away from the original and rewrite the text in your own words.

:::"....If you find that you can’t do A or B, this may mean that you don’t understand the passage completely..."

This may seem more stylistic than factual, and it is. But as an instructor, I often found that people who paraphrased idea-by-idea for a paragraph or more often didn't understand the text well enough to integrate the idea into the rest. That resulted in work of lower quality.

== "if you can't cite it, you can't say it" ==

I'd like clarification on the spirit of this rule. Should it be interpreted as

* "Do not add text, unless it is either common knowledge or *immediately* supported with a citation." OR
* "Do not add text, unless it is either common knowledge or *possible* to cite it."

FWIW, I would hope it's the latter. While it may not be optimal, I feel like there is value in adding information that the author is certain is in the literature, but does not yet have the citation handy. Often getting an article started is the hardest part, and we facilitate that if we allow some flexibility on citations. Authors can return to add citations later, and other people can help to add missing citations once there is a skeleton of text in place. To support this, I would love if we also had a "citation needed" template like wikipedia.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:45, June 13, 2019 (EDT)

: The second definition also supports the spirit of having various [[MEpedia:How_to_contribute#Roles|Roles]]. Some people are good at distilling down a pile of information to a summary, some people are good at the precision work of citing all key information, and some are good at both. Some people may be good at both, but requiring both at the same time increases friction and may reduce contributions. -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:48, June 13, 2019 (EDT)
::Hi EscapeTheFog! Any questions about the guidelines should probably be directed at [[User:JaimeS]] (note the spelling) She can be hard to get a hold of, but linking to her (nonexistent) user page should trigger an alert for her. (per [[MEpedia:Discussion]])
::For more information on template tags such as "Citation needed", see the [[Tutorial]]. Hope this helps.
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:17, June 14, 2019 (EDT)

===Re: "if you can't cite it, you can't say it" -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:13, June 26, 2019 (EDT)===

: The former! :)

Definitively, we often think we know something is true, especially in a field like ME, where we may have heard it repeated often. However, you hunt down the source and you find it's been misquoted/misinterpreted/doesn't exist... OFTEN.

Moreover, sometimes you find it's just something people ~say~ that has a DUBIOUS source that you'd only know by finding said source.

== Sources to avoid ==

I'm a bit concerned because this contradicts advice we give elsewhere, for instance the outlines that specifically asking for the Wikipedia page, or, lower down on this page, explaining that it's a good source of sources, just not a good thing to cite directly. Additionally, I'm not sure I agree with the idea a doctor's website should never be cite: to me the more important thing (similar to the Wikipedia issue) is making sure the editor understands and documents for the reader what exactly a source can and cannot be considered reliable for. A doctor's website is probably pretty reliable for documenting that doctor's opinion, which may be of interest to the community even if it differs from consensus (or more often, if there is no consensus). The important thing is that the prose make clear when something is individual opinion and not consensus. So I'm wondering if these warnings could be converted into more "advice for handling sources" rather than telling people they can't use them at all. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 21:34, July 13, 2019 (EDT)
:I was hoping for some good feedback on this. Thank you.
:It might help to look this [https://www.me-pedia.org/index.php?title=Overtraining_syndrome&oldid=51563#cite_ref-1 old version] for what I'm trying to avoid - especially sources 1, 3, and 9 (the last is a doctor), look at the mentions of Lyme and symptoms list. 
:'''Wikipedia''' is best removed from the Article outlines in my view. A link to webmd, merckx msnuals or scienxedirect's search results would be much better. But linking to it wikipedia learn more is not the same as citing it. The [[MEpedia:Editorial_guidelines]] already point out Wikipedia is not reliable so I think we are being consistent. We could change the wording of the new section to suggest '''reading''' the References section on Wikipedia only for suggested sources, but I think ''linking'' to Wikipedia as a source is not OK. I've just been trying to sort out another page that actually linked to a numbered Wikipedia reference rather than the reference itself. Bear in mind also that some of what we cover are "contested" diagnoses, and Wikipedians are not representative of the general population - they are prominently young, male, single, childless (none of which are bad things but limited life experience), lacking in a biological or health background and in my experience highly skeptical and prone to promote minority opinions, regardless of new facts. 
:I'm finding '''doctors websites''' frequently used for key information that should be taken from elsewhere - or containing various misunderstandings - like symptoms of a poorly understood condition - which actually don't match the proposed diagnostic symptoms and probably cover half the population - and for unproven benefits of various supplements. So many doctors use "Chronic fatigue" and "Chronic fatigue syndrome" interchangeably, others claim to have found a cure (and they will sell you it). Dr Axe has "4 ways to overcome CFS" - with a few references that he massively overstates - treatments we certainly don't to claim are effective based on that. The single source he uses is a normal article suggesting that those treatments should be investigated further - not the same as Dr Axe claiming they are the "most promising treatments" for CFS. [https://drrondrucker.com/cfs This doctor] claims CFS is an autoimmune gut condition, and only 8 months of his non-prescription pills will treat it - that's not something we should cite on the Autoimmunity hypothesis page which is one of the harder places to get sources (OMF research is looking into autoimmunity at the moment). Any doctor's website with no sources on the article shouldn't be used (unless perhaps it's a well known expert in the field or they are cited on a page about the treatment they themselves have invented eg Dr Gupta on the Gupta programme page). Doctor's websites often promote whatever their niche treatments are - eg the "leaky gut" doctors will list 30 symptoms and that's their opinion - based on no actual studies at all, but gets cited as if it's fact. There's also a tiny number of atrocitious websites with a single author and single reviewer that just make things up (patient.co.uk actually invented totally false information a few years ago - didn't even get the classification or symptoms right - this has happened on several pages there.) There's also many references to "verywellhealth" that are actually just blogs by people with the illness but get cited as medical facts. So, that's what I'm trying to address. There's a real avoidance of peer reviewed journals too, in favor of unreferenced websites. I'm certainly open to suggestion. :'''YouTube''' videos might be something else that shouldn't be cited as a reference (unless it's explaining a clinical trial, treatment or clearly described as an opinion). Linking to it is fine, or embedding on the page to support referenced facts. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:22, July 14, 2019 (EDT)
:: I think it might be helpful to us to start a policy whereby any changes to the guidelines are discussed before they are implemented. These are really good ideas being raised, it would be nice to get them right. Just my 2 cents!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:31, July 15, 2019 (EDT)

===Re: Sources to avoid -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 11:42, July 15, 2019 (EDT)===

: Hmm.

: Rather than saying we can never use a doctor's website, I think it's more appropriate to say that PRIMARY sources are always, always preferable to SECONDARY sources. If a doctor cites a statistic and doesn't say where it's from, and you can't find the PRIMARY source, you shouldn't cite it. In fact, I'm surprised that this adjuration doesn't already exist somewhere. It's kind of vital to citation prioritization! The same goes for Wikipedia: it's a good place to hunt down PRIMARY sources. One wouldn't cite Wikipedia itself, and that should have been clear in the guidelines' original incarnation.

: We can also clarify the citation of facts versus opinions or theories. For example, let's say someone wants to reference Myhill's theories. She hasn't published often, but she's influenced a great number of patients' ideas about the disease, and treated a great number of patients; and anyway, we'd be citing her work as theory, not fact.

"Many researchers have found mitochondrial dysfunction" <-- cites Myhill's site [NOPE]

"Some clinicians, such as Dr Myhill, have treated people with ME with supplements geared to augment mitochondrial dysfunction" <-- cites Myhill's site [YES]

: I do agree we should talk about any changes on policy pages before implementing them.
:::I should have discussed here first. My apologizes. Dr Myhill may be very popular but she has had complaints to the GMC and been forced to change her website to a degree as a result, not so much about ME but her anti-vaccine statements. What about changing the doctor one to: 
"Information from a doctor's website must be verified for accuracy (read the original sources used), or presented as a minority opinion only, and not used for the introduction or symptom lists"
:::Re: Types of sources. Primary / secondary / tiertary are confusing teens to many. Wikipedia relies on tertiary eg systematic reviews like Cochrane or encyclopedia. We have very few and they are typically biased in ME or CFS Research. We actually prefer primary (eg peer reviewed articles) and secondary (Consensus statements, guidelines, etc). I find many charity websites to be very accurate, if articles are referenced. I think it would be better to talk about '''verifiable sources''' and '''academic sources'''. Perhaps with unreferenced articles from doctors/physios/etc considered one of the lowest quality of sources, only to cited as Dr X claims / believes / views that ...
:::I think it would be a positive to have an outright ban on using perhaps up to 5 extremely low quality websites that rank highly, including Wikipedia, but allow them under "learn more" or "articles and blogs" links since many explain patient experiences or different minority but valuable views. A few websites could be included due to being inaccessible in outside the country of origin - [[User:Pyrrhus]] has raised this before.
:::Feedback would also be welcome on proposed changes to the [[Template_talk:Cleanup|Cleanup template]] including links to scientific guidelines and being able to pick a default message to add to. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 12:10, July 15, 2019 (EDT)

== Sources to be careful with ==
* Unreferenced articles: If the article you are referencing does not list its own references at the end of the article, it’s probably not a reliable scientific reference.
* Blogs may be useful references when talking about the blog author or advocacy in general, but blogs should never be used as a reference for scientific evidence, as they are not peer-reviewed.
* A doctor's website may be a good source when talking about the doctor or the doctor’s ideas, but a doctor's website should not be used as a reference for scientific evidence. Doctor websites often reflect the doctor's opinion rather than an expert consensus.
* Wikipedia or other wikis may be good to list under the “Learn more” section of an article, but they should not be used as a reliable reference. You may, however, find a reliable reference in the “References” section of a Wikipedia article.
* Generally speaking, be aware that sources that are not published in a peer reviewed journal or an edited book may reflect only the authors' opinion.
* And remember that it’s always best to hunt down the original source of an idea you are citing. If your source merely cites a different source for that idea, it is best to use the original (“primary”) source instead of a copycat (“secondary”) source. However, secondary sources are fine if they are published review articles or consensus statements.
Feel free to edit what's above. I left "Sources best avoided" with just "Unreferenced articles" below it in the science guidelines [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 10:09, July 17, 2019 (EDT)
:I have made my changes. I changed “Sources to avoid” to “Sources to be careful with” to allow for nuance. It may be a good idea to substitute “Wikipedia” in the “Learn more” sections of the article outlines with “Outside articles: e.g. Wikipedia, WebMD, Merck Manual, or ScienceDirect”. I haven’t really come across any attempts to use a YouTube video as a scientific reference, so I’m not sure it needs a mention. The only reference we had to remove because it was only accessible in the UK was the British Prescription Drug Formulary.
:That’s what I’ve got. Any changes you would like to make [[User:JaimeS]] [[User:Canele]]?
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:40, July 20, 2019 (EDT)
:[[User:JaimeS|JaimeS]] I like the more detailed work above.

===Re: Sources to be careful with -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 16:14, September 16, 2019 (EDT)===

: Replace this text with your reply

==Scientific consensus ==
I suggest adding this heading and stating typical places where this can be found, eg IACFS Primer, CCC, ICC, IOM report. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:51, August 8, 2019 (EDT)
:The term has different meanings: outcome or method. I either case: not feasible. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:05, September 16, 2019 (EDT)

==Contested evidence ==
*How do we report on research on a researcher's page when there is substantial evidence or the conclusions from a piece of research are contested? Eg X does a clinical trial saying the Lightning Process is effective, but the Lightning Process page (and scientific consensus) says the opposite. This goes to neutral POV (point of view).
*1. If most of the researcher's evidence is contested do we use maybe a single major source to refute each, or put it all in a Criticisms section instead? Or do both? I'm uncomfortable writing things like "and X reported that medically unexplained symptoms (MUS) including CFS..." when CFS isn't categorized as MUS - that's a minority opinion. Is it better to put ''X regards CFS as medically unexplained symptoms (MUS), and X's study on antidepressants for MUS found...'' - Would mentioning limitations reported by the study (if it does), or by others be helpful? Eg use of broad Oxford criteria, drop out rates, being very specific about severity or how many improved.
2. Bias: Wikipedia has a list of [https://en.wikipedia.org/wiki/Wikipedia:Manual_of_Style/Words_to_watch words to watch] that suggest biased writing, these might be best in the editorial guidelines, but I think it useful to link to them here. Eg claim - "X claimed that..." is considered likely bias.
*3. Experts- Wikipedia gives the same weight to all regardless of qualifications / Special interests (I personally hate this - experts should not always have authority but they are experts!) - what's our view?
*4. Neutral point of view - [[Esther Crawley]]'s page is one of our top 10, it's not neutral in my view. What guidelines can help with this?
*5. A few pages have a list of articles on a particular point of view (list of articles explaining CBT not approx got CFS) - do we insist that an opposite list must also exist, and what about scientific consensus, if it supports the view that the list has do we still need the opposite?
*6. I find it very hard to work out if some topics are scientific or editorial guidelines. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:51, August 8, 2019 (EDT)
::Neutrality does not mean a balance between postive and negative. If someone is an angelically good or a notoriously bad researcher, than the article should reflect that. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:14, September 16, 2019 (EDT)

==Minor suggestions from last update ==
*[[Objective outcome]]s more reliable than [[subjective outcome]]s (e.g. step counters vs questionnaires)
*RCTs: objective outcomes vs subjective to mention? How to compare double blind with subjective outcomes better than unblinded with objective outcomes?
*Systematic reviews are often given more weight elsewhere than RCTs, do we have a policy on this given they major issues with certain systematic reviews eg the York Review used by the NHS, and Cochrane's
*Consider linking to [[:Category:Research terminology]] (although this does need work)

* Is it worth pointing out that close attention should be paid to the diagnostic criteria used, eg CCC selects more severely ill patients and less patients than Fukuda CFS criteria or SEID criteria, Fukuda more than Oxford

* Trials with [[pre-specified outcome]]s given more weight except when [[outcome switching]] occurs?
*Possibly link to [[Research bias in ME/CFS]] or the research terminology category. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:52, September 16, 2019 (EDT)
:With the exception of selection criteria (encompassing more than just diagnostic criteria), which should be mentioned: you can't capture everything with rules. Experienced editors will weigh the evidence on a case-by-case basis. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:02, September 16, 2019 (EDT)

: A minor remark: I don't think objective outcomes are seen as more reliable per se, it's just that they are more robust towards all sorts of biases. When a trial is properly controlled and blinded, then subjective outcomes can be equally or even more useful (for example because objective outcomes are often proxy's of what you want to measure).--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 18:20, September 16, 2019 (EDT)

: I agree, Sisyphus. Guido, guidelines are for everyone to follow. -- [[User:JaimeS|JaimeS]]
:: Wrong section for this comment, I think. What I'm saying here is that we shouldn't try and create guidelines for everything. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 13:06, September 17, 2019 (EDT)

===Re: Minor suggestions from last update -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 12:30, September 17, 2019 (EDT)===

: Replace this text with your reply

==One study ain't enough==
Suggestion: perhaps the guideline should mention 'one study ain't enough' or something like that. Because in my experience this is the most frequent mistake: people find a scientific study reporting X and they think X is a fact. So perhaps the guideline could add that it requires multiple studies with large sample size (more than 100) from several research teams for something to be considered established. If this isn't the case (which is the rule rather than the exception in ME/CFS) then this uncertainty should be reflected in the text. --[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 18:20, September 16, 2019 (EDT)

===Re: One study ain't enough -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 12:32, September 17, 2019 (EDT)===

: Oh, absolutely. And how many people are in a study -- and how this affects things like a genetics study. 200 is quite respectable for a small drug trial or looking at a blood marker, but it means zip in, say, GWAS. Sisyphus, can you add some suggested language for this? [[User:JaimeS|JaimeS]]

==Balance==
Suggestion: Another issue is imbalance. Sometimes people write things that are factually correct and well-referenced, but the information only presents one view on the subject. Suppose that someone only writes about the bad things a researcher did, and not about the good things (or the other way around). The person in question may not have bad intent: he may simply only know about the bad things. Even if the info is correct, it may look like MEpedia is trying to trash the researcher by only listing the bad things. Such a page would need a cleanup template on imbalance. So it might be good to mention this in the guideline. If you add info, be aware of the balance of the article. This is a wider issue than omitting references you disagree with.

Suggestion: A related issue I see, is people using a page to push a particular hypothesis. So the page might have correct statements and references but they are selected in such a way that they suggest a particular hypothesis/interpretation. Suppose someone believes ME/CFS is a stress-related illness and starts adding info on different pages that makes the connection with other stress-related illnesses or phenomena. Then he's pushing MEpedia content and the interpretation of readers towards suggesting a link between ME/CFS and stress. I think there's currently a danger of this happening with conditions that are seen as comorbid of ME/CFS. Mentioning them on several pages is suggesting a link between them and ME/CFS. One might have similar problems if people who are adamant about mold illness, chronic lyme start adding information. They might be well-intentioned and just adding the expertise they have, but because it's always from the same perspective and suggesting the same hypothesis, this might affect the balance and neutrality of MEpedia content as well.--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 18:20, September 16, 2019 (EDT)

===Re: Balance -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 12:33, September 17, 2019 (EDT)===

: I think that this is already covered with "be careful of only citing what you agree with" (where it's deliberate). If people don't know about something, they can't help their slant because they're not aware of it. Others will have to come in and remove bias and add new information.

ME Vereniging Nederland

2019-09-17T16:21:46Z

Guido den Broeder:/* Notable people */ chair

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Broer Scholtens (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], Vereniging tegen de Kwakzalverij, 27 May</ref><ref>Broer Scholtens (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], Vereniging tegen de Kwakzalverij, 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the 'Hersenstraat' (''Brain Street''), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.<ref>PGO Support (2017), [https://www.pgosupport.nl/dutch-brain-council-trekt-aandacht-op-huisartsbeurs "Dutch Brain Council trekt aandacht op huisartsbeurs"], 7 February</ref>

Some of the association's activities had to be put on hold when chairman Guido den Broeder had to fight for survival against the city of Rotterdam, which had denied him welfare. Den Broeder achieved a major victory in 2016,<ref>ME Vereniging Nederland (2016), [http://www.mevereniging.nl/gemeente-rotterdam-moet-buigen/ "Gemeente Rotterdam moet buigen"], news item, 6 July</ref> but soon after the city started again, emptying his bank account and revoking his welfare by claiming that he had been working fulltime in 2017 for the Stichting ME Research.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder, chair)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
Because of the poor mobility of many ME patients, the ME Vereniging Nederland maintains a strong digital presence, including several social media, and most of the general information it provides can be found on its website.

* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

The association is the successor of the earlier [[ME en CVS Vereniging]], founded in 2005, which included postviral, neurological chronic fatigue syndrome.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland (2016), [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME, requested by parliament.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Dutch Brain Council]]
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T16:00:01Z

Guido den Broeder:/* Online presence */ poor mobility

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Broer Scholtens (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], Vereniging tegen de Kwakzalverij, 27 May</ref><ref>Broer Scholtens (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], Vereniging tegen de Kwakzalverij, 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the 'Hersenstraat' (''Brain Street''), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.<ref>PGO Support (2017), [https://www.pgosupport.nl/dutch-brain-council-trekt-aandacht-op-huisartsbeurs "Dutch Brain Council trekt aandacht op huisartsbeurs"], 7 February</ref>

Some of the association's activities had to be put on hold when chairman Guido den Broeder had to fight for survival against the city of Rotterdam, which had denied him welfare. Den Broeder achieved a major victory in 2016,<ref>ME Vereniging Nederland (2016), [http://www.mevereniging.nl/gemeente-rotterdam-moet-buigen/ "Gemeente Rotterdam moet buigen"], news item, 6 July</ref> but soon after the city started again, emptying his bank account and revoking his welfare by claiming that he had been working fulltime in 2017 for the Stichting ME Research.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
Because of the poor mobility of many ME patients, the ME Vereniging Nederland maintains a strong digital presence, including several social media, and most of the general information it provides can be found on its website.

* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

The association is the successor of the earlier [[ME en CVS Vereniging]], founded in 2005, which included postviral, neurological chronic fatigue syndrome.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland (2016), [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME, requested by parliament.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Dutch Brain Council]]
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T15:47:29Z

Guido den Broeder:/* History */ successor

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Broer Scholtens (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], Vereniging tegen de Kwakzalverij, 27 May</ref><ref>Broer Scholtens (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], Vereniging tegen de Kwakzalverij, 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the 'Hersenstraat' (''Brain Street''), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.<ref>PGO Support (2017), [https://www.pgosupport.nl/dutch-brain-council-trekt-aandacht-op-huisartsbeurs "Dutch Brain Council trekt aandacht op huisartsbeurs"], 7 February</ref>

Some of the association's activities had to be put on hold when chairman Guido den Broeder had to fight for survival against the city of Rotterdam, which had denied him welfare. Den Broeder achieved a major victory in 2016,<ref>ME Vereniging Nederland (2016), [http://www.mevereniging.nl/gemeente-rotterdam-moet-buigen/ "Gemeente Rotterdam moet buigen"], news item, 6 July</ref> but soon after the city started again, emptying his bank account and revoking his welfare by claiming that he had been working fulltime in 2017 for the Stichting ME Research.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

The association is the successor of the earlier [[ME en CVS Vereniging]], founded in 2005, which included postviral, neurological chronic fatigue syndrome.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland (2016), [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME, requested by parliament.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Dutch Brain Council]]
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T13:43:58Z

Guido den Broeder:/* Activities */ city of Rotterdam

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Broer Scholtens (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], Vereniging tegen de Kwakzalverij, 27 May</ref><ref>Broer Scholtens (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], Vereniging tegen de Kwakzalverij, 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the 'Hersenstraat' (''Brain Street''), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.<ref>PGO Support (2017), [https://www.pgosupport.nl/dutch-brain-council-trekt-aandacht-op-huisartsbeurs "Dutch Brain Council trekt aandacht op huisartsbeurs"], 7 February</ref>

Some of the association's activities had to be put on hold when chairman Guido den Broeder had to fight for survival against the city of Rotterdam, which had denied him welfare. Den Broeder achieved a major victory in 2016,<ref>ME Vereniging Nederland (2016), [http://www.mevereniging.nl/gemeente-rotterdam-moet-buigen/ "Gemeente Rotterdam moet buigen"], news item, 6 July</ref> but soon after the city started again, emptying his bank account and revoking his welfare by claiming that he had been working fulltime in 2017 for the Stichting ME Research.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME, requested by parliament.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Dutch Brain Council]]
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T13:17:52Z

Guido den Broeder:/* History */ +

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Broer Scholtens (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], Vereniging tegen de Kwakzalverij, 27 May</ref><ref>Broer Scholtens (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], Vereniging tegen de Kwakzalverij, 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the 'Hersenstraat' (''Brain Street''), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.<ref>PGO Support (2017), [https://www.pgosupport.nl/dutch-brain-council-trekt-aandacht-op-huisartsbeurs "Dutch Brain Council trekt aandacht op huisartsbeurs"], 7 February</ref>

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME, requested by parliament.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Dutch Brain Council]]
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T13:16:10Z

Guido den Broeder:/* See also */ +1

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Broer Scholtens (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], Vereniging tegen de Kwakzalverij, 27 May</ref><ref>Broer Scholtens (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], Vereniging tegen de Kwakzalverij, 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the 'Hersenstraat' (''Brain Street''), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.<ref>PGO Support (2017), [https://www.pgosupport.nl/dutch-brain-council-trekt-aandacht-op-huisartsbeurs "Dutch Brain Council trekt aandacht op huisartsbeurs"], 7 February</ref>

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Dutch Brain Council]]
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T13:14:54Z

Guido den Broeder:/* Activities */ author; ref Hersenstraat

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Broer Scholtens (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], Vereniging tegen de Kwakzalverij, 27 May</ref><ref>Broer Scholtens (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], Vereniging tegen de Kwakzalverij, 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the 'Hersenstraat' (''Brain Street''), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.<ref>PGO Support (2017), [https://www.pgosupport.nl/dutch-brain-council-trekt-aandacht-op-huisartsbeurs "Dutch Brain Council trekt aandacht op huisartsbeurs"], 7 February</ref>

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T13:05:24Z

Guido den Broeder:/* Activities */ +1 ref Vereniging tegen de Kwakzalverij

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.<ref>Vereniging tegen de Kwakzalverij (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], 27 May</ref><ref>Vereniging tegen de Kwakzalverij (2014), [https://www.kwakzalverij.nl/nieuws/orthomoleculaire-natuurgenezers-vogelaar-en-tisscher-opgepakt/ "Orthomoleculaire natuurgenezers Vogelaar en Tisscher opgepakt"], 23 April</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the ''Hersenstraat'' (brain street), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T12:24:07Z

Guido den Broeder:/* Activities */ attempts to discredit

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref> The Vereniging tegen de Kwakzalverij has on various occasions attempted to discredit the day and its contributors, but were ignored by the association.<ref>Vereniging tegen de Kwakzalverij (2013), [https://www.kwakzalverij.nl/nieuws/me-gelovige-peperkamp-uit-brits-artsenregister-geschrapt/ "ME-gelovige Peperkamp uit Brits artsenregister geschrapt"], 27 May</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the ''Hersenstraat'' (brain street), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T12:10:32Z

Guido den Broeder:/* Notable people */ Theo Wijlhuizen

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the ''Hersenstraat'' (brain street), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (founder)
* [[Theo Wijlhuizen]] (former medical advisor)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T12:04:20Z

Guido den Broeder:/* Funding */ Raad van State

The '''ME Vereniging Nederland''' (ME Association Netherlands) is the national association of people with [[myalgic encephalomyelitis]] in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> Its position is that ME is a [[brain]] disorder, previously considered nonparalytic [[poliomyelitis]], unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref> The association is a member of the [[Dutch Brain Council]]<ref>Dutch Brain Council, [https://dutchbraincouncil.nl/organisation_overview Organization overview], retrieved 20190916</ref> and the Patiëntenfederatie Nederland.

==Aims==

==Activities==
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (''National ME information day''), formerly organized by [[MEdivera]], bringing together patients, advocates, doctors and researchers. Partipants included [[Guido den Broeder]], [[Johannes Peperkamp]], [[René Tisscher]], [[Frank Twisk]], [[Ruud Vermeulen]], [[Frans Visser]] and [[Theo Wijlhuizen]].<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/landelijke-me-informatiedag/ "Landelijke ME informatiedag]", retrieved 20190917</ref>

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the [[Stichting ME Research]]:
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')

The association has on various occasions occupied a boot as part of the ''Hersenstraat'' (brain street), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.

==Funding==
The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the [[International Classification of Diseases]] doesn't support this.<ref>ME Vereniging Nederland (2015), [http://www.mevereniging.nl/raad-van-state-negeert-who-verdrag/ "Raad van State negeert WHO-verdrag"], news item, 19 March</ref>

==Notable people==
* [[Guido den Broeder]] (Founder)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.<ref name="Mediaplanet">MediaPlanet (2015), [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische encefalomyelitis (ME)"], Mijn Lichaam, September</ref>

==Online presence==
* [http://www.mevereniging.nl/ Website]
* [https://www.facebook.com/MEVerenigingNederland Facebook]
* [https://twitter.com/ME_Vereniging Twitter]
* [https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA YouTube] (DossierME)

==History==
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate [[Guido den Broeder]]. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.<ref>ME Vereniging Nederland, [http://www.mevereniging.nl/me-vereniging-nederland-aangesloten-bij-dutch-brain-council/ "ME Vereniging Nederland aangesloten bij Dutch Brain Council"], news item, 16 February</ref>

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==
* [http://nl.wikisage.org/wiki/ME_Vereniging_Nederland Wikisage - ME Vereniging Nederland]

==See also==
* [[Stichting ME Research]]

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

ME Vereniging Nederland

2019-09-17T11:51:52Z

Guido den Broeder:/* Activities */ Landelijke ME informatiedag

Stichting ME-de-patiënten

2019-09-17T11:29:12Z

Guido den Broeder:very old link ...

{{stub}}
{{NeedsImage}}

'''Stichting ME-de-patiënten''' (''ME-the-patients Foundation'') in Limmen, [[Netherlands]], is a patient group for [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]]. It is a member organization of the [[European ME Alliance]].<ref>{{Cite web|url=http://www.me-de-patienten.nl/Index.htm|title=Stichting ME-de-patiënten|website=www.me-de-patienten.nl|access-date=2019-09-17}}</ref>

==Aims==

==Activities==

==Notable people ==
* [[Frank Twisk]]

== Online presence ==
*[http://www.me-de-patienten.nl/Index.htm Website]

==History==

==Learn more==

==See also==
* [[European ME Alliance]]
* [[Frank Twisk]]
* [[Het Alternatief]]

==References==
{{reflist}}

[[Category:Patient groups]]
[[Category:Dutch patient groups]]

Stichting ME-de-patiënten

2019-09-17T11:23:51Z

Guido den Broeder:section headers; see also

{{stub}}
{{NeedsImage}}

'''Stichting ME-de-patiënten''' (''ME-the-patients Foundation'') in Limmen, [[Netherlands]], is a patient group for [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]]. It is a member organization of the [[European ME Alliance]].<ref>{{Cite web|url=http://www.me-de-patienten.nl/Index.htm|title=Stichting ME-de-patiënten|website=www.me-de-patienten.nl|access-date=2019-09-17}}</ref>

==Aims==

==Activities==

==Notable people ==
* [[Frank Twisk]]

== Online presence ==
*[http://www.me-de-patienten.nl Website]

==History==

==Learn more==

==See also==
* [[European ME Alliance]]
* [[Frank Twisk]]
* [[Het Alternatief]]

==References==
{{reflist}}

[[Category:Patient groups]]
[[Category:Dutch patient groups]]

Stichting ME-de-patiënten

2019-09-17T11:16:37Z

Guido den Broeder:EMEA member (see the stichting's website); copyedit

{{stub}}
{{NeedsImage}}

'''Stichting ME-de-patiënten''' (''ME-the-patients Foundation'') in Limmen, [[Netherlands]], is a patient group for [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]]. It is a member organization of the [[European ME Alliance]].<ref>{{Cite web|url=http://www.me-de-patienten.nl/Index.htm|title=Stichting ME-de-patiënten|website=www.me-de-patienten.nl|access-date=2019-09-17}}</ref>

== Notable people ==
* [[Frank Twisk]]

== Online presence ==
*[http://www.me-de-patienten.nl Website]

== Learn more ==

== References ==
[[Category:Patient groups]]
[[Category:Dutch patient groups]]

European ME Alliance

2019-09-17T00:55:42Z

Guido den Broeder:rv - 'Het Alternatief' is the name of my good friend Frank Twisk's website, nothing else

The '''European ME Alliance''' is a group of European patient groups for myalgic encephalomyelitis ([[ME]] or [[ME/CFS]]).<ref>{{Cite web|url=http://www.euro-me.org/index.shtml|title=EMEA|website=www.euro-me.org|access-date=2019-09-06}}</ref> It was formed in 2008 and set up to lobby for increased funding for biomedical research to lead to for patients. It now has representatives from Belgium, Denmark, Germany, Holland, Ireland, Italy, Norway, Spain, Sweden, Switzerland and the UK.

==Member organisations==
*[[ME-Vereniging]] - Belgium
*[[ME Foreningen]] - Denmark
*[[Suomen CFS-Yhdistys]] - Finland
*[[Association Française du Syndrome de Fatigue Chronique]] - France
*[[Fatigatio e.V.]] - Germany
*[[ME félag Íslands]] - Iceland
*[[Irish ME Trust]] - Ireland
*[[Associazione Malati di CFS onlus|Associazione Malati di CFS]] onlus - Italy
*[[Stichting ME-de-patiënten]] - Netherlands
*[[Hope 4 ME & Fibro NI]] - Northern Ireland
*[[Norges ME Forening]] - Norway
*[[Liga SFC]] - Spain
*[[Riksföreningen för ME-patienter]] - Sweden
*[[Verein ME/CFS Schweiz]] - Switzerland
*[[Invest in ME Research]] - United Kingdom

==Online presence==
*[https://www.facebook.com/groups/EUROMEALL/ Facebook]
*[https://twitter.com/EUROMEALL Twitter]
*[http://www.euro-me.org/ Website]

==References==
<references />
[[Category:Patient groups]]
[[Category:International patient groups]]

MEpedia talk:Science guidelines

2019-09-16T21:14:11Z

Guido den Broeder:/* Contested evidence */ on neutrality

MEpedia talk:Science guidelines

2019-09-16T21:05:28Z

Guido den Broeder:/* Scientific consensus */ not feasible

== Old ideas ==

Some possible ideas to consider:

1) Quality of references: should be peer-reviewed journal articles or reputable textbooks

2) In the absence of good research, anecdotes can be cited under certain conditions (what conditions?) so long as in the text of the article, the information is not passed off as an established fact and the source of the information is clear. For example, "some clinicians have observed...." or "many patients have reported...." There still needs to be an external citation.

3) Avoid where possible citing health blogs or other third party sources for information that is considered to be scientific fact, especially where a first party source (i.e., a journal article) is available. Blogs, forums, etc. *can* on a case by case basis be reasonable sources for anecdotal or observational information.

4) Where available, always report both negative and positive results. If you do a search for, say, muscle biopses in ME patients, report both the studies that found evidence of abnormalities and studies that did not.

5) Where possible, report information about the design of a specific study or series of studies if they help the reader to grasp the quality and reliability of the findings. For example you might point out features of the design that decrease our confidence in the outcome: small sample sizes, lack of controls, open label. You might also point out information about the design that increase our confidence: randomized, double blind, large N, proper controls, finding replicated. This does not need to be done in great detail but you might say, "Several small n studies have found...." Or "A large, randomized trial found......"

--[[User:Meaction|Meaction]] ([[User talk:Meaction|talk]]) 13:41, 21 November 2015 (PST)

{{collapse top}}
== Volunteer Slack? ==

Under the "Less is more" subsection, it says "go to the Volunteer Slack".
 What is a "Volunteer Slack"???
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:31, 14 March 2019 (EDT)
:[[User:Pyrrhus|Pyrrhus]], Slack is a technology that's basically a very fancy chatroom service; you can make a Slack for a specific group and then it offers the possibility of having different, easily searchable threads for different topics. I take it there is an MEpedia Slack, although I'm not part of it and don't know the Slack's name or who to ask for an invite, so eventually we should probably try to find out how users who wish to can join (personally I don't love using it; I find it overstimulating and would rather discuss with editors here, but it's good to offer different options as different people will undoubtedly have a variety of different preferences and accessibility requirements.) Meanwhile if you want, you can check out the tech at Slack.com though; the basic service is free, you only pay for upgrades (like storage if your group has more than 10,000 messages, etc.) Poking around, I do see an MEAction Volunteers Slack (meaction.slack.com) and you can sign into it if you have an meaction.net email address. But I don't know if MEpedia has a separate one or if MEpedia is a "channel" in that one; also don't know if you have to get an meaction.net email or if possibly existing members (or especially, moderators) can add send invites to others to join the Slack, if that is the right one. So many questions! Sorry I'm probably giving more questions than answers here! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:29, 19 March 2019 (EDT)
::Thank you so much [[User:Canele|Canele]]! That is very very informative. I prefer discussing things here on MEpedia too, but we desperately need to enable communication between contributors any way we can. I'll ask around to see how I could join. Now, whom do I ask? ''That'' would be a good question for the Slack group! ;)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:12, 19 March 2019 (EDT)
:::The best bet as far as I know would be [[User:JenB]], or maybe she can suggest who best to go to with MEpedia questions if it's someone else? (I'd also love to ask about either adding to the [[MediaWiki_talk:Captcha-addurl-whitelist|CAPTCHA whitelist]] or getting set up to take of that myself, which I'd be happy to do, just don't know who best to ask for the necessary permissions.) Thanks for any guidance! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:13, 19 March 2019 (EDT)
::::I’m now in the Slack group, so if there’s anything you want me to bring up, let me know. The CAPTCHA whitelist has already been brought up. Is the only thing needed there is admin privs to edit the file? Or is the CAPTCHA whitelist more complicated than that?
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:02, 29 March 2019 (EDT)
::::::Oh, thanks so much [[User:Pyrrhus|Pyrrhus]]. Yeah as best I can tell, it's just admin permissions that's required to edit that page and then appropriate URLs only need be pasted in. As Njt has pointed out, the best would be if we could set up a user right group that automatically turned off the CAPTCHA for trusted users (discussed further here: [[MediaWiki_talk:Captcha-addurl-whitelist#Regex_for_Whitelist]]), but setting that up is beyond my personal technological capacities, so until someone who is capable has the time to take up that project, I think granting someone who is around more (you, me, whomever) permission to add to the white list would go a long way to improving accessibility. (My personal opinion would be that whomever is delegated that authority should only whitelist the most rock-solid science and reference sites. Other kinds of sites are important to include on MEpedia but I've seen a fair number of places where they're not used in accordance with [[MEpedia:Science guidelines]] and I think it maybe wise to leave the speed bump up at least for now.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::[[User:Canele]] If you wanted to join Slack's MEpedia group you can email the info meaction.net email address, on contact [[User:JaimeS]]. Some discussion goes on in the Facebook group (linked to from the MEAction website) but not much. I have recently discovered that auto confirm by email address may remove the Captcha, fixing the email feature has been flagged up since there's a new issue with it. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 18:42, 29 March 2019 (EDT)
::::::Thanks [[User:Notjusttired|Njt]] for the head's up about how to join the Slack. I may do so later; I find the tech a little overstimulating so I like discussing here where things don't move quite as rapidly. Meanwhile though, that sure would be great if eventually there were an automatic user right to disable the CAPTCHA. I suppose one thing I would say is, my ideal world would disable the CAPTCHA after a user has made a certain number of manual edits (500?) rather than just after confirming their email address, because it's so easy for spammers to dummy up an email address, confirm it, and then go to town. On a site about science, I do worry about manipulation by folks with a financial interest. But, we'll wait to see what's possible, I suppose? [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::::That's a good suggestion on number of edits - could be put in the Dev queue. I would set it much lower - say 50 edits - the Captcha is easy to lookup for people so I presume it's mostly there to stop robots / automated edits. With automated edits I'm not sure how easy it is for robots to do the email confirm or if any have tried. Njt [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:14, 30 March 2019 (EDT)
::::::::Good idea, I'll add it to the dev queue! You're probably right that 50 would do the job for now. I know Wikipedia deals with folks that for-profit, not-necessarily-reliable sites are paying to go in and manually add many links to that site; I was thinking the CAPTCHA would be at least a speed bump for that. But no real reason to have it be so high until/unless that becomes an issue here. I assume once that feature is in place, it wouldn't be so hard to adjust the specific number. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:21, 30 March 2019 (EDT)

== Rename to MEpedia:Science guidelines ==

Any objection if this page "Science Guidelines" is renamed to "MEpedia:Science guidelines"?
 Since this page is about the MEpedia project itself, it really should belong in the MEpedia namespace. ("MEpedia:")
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:43, 18 March 2019 (EDT)
:I'm for it! (Again!) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 19 March 2019 (EDT)
::Done!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:04, 29 March 2019 (EDT)
{{collapse bottom}}

== Deleting "When should I cite?" ==

Any objections to deleting the "When should I cite?" instruction? I feel like it's already (and more accurately) covered in the preceding "If you can't cite it, you can't say it" instruction. Using ''Citing References in Scientific Research Papers'' makes sense for those doing primary research since original arguments/findings don't need to be cited--but here (I think) we want everything added to be referenced so that readers should be able to go check to see what verifies a given claim, rather than having to trust whichever random editor who made the change was actually correct. Right? Thoughts? (Sorry, tired, this might not be clear.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 00:38, 11 April 2019 (EDT)
:I’m not sure I understand, but I’ll tag [[User:JaimeS]] because she’s the Science Editor and she can give a definitive yes or no. As a general rule, I think we want to drill into people that everything needs to cited, even if we repeat our selves. Hope this helps.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:02, 11 April 2019 (EDT)
::Let me take another, more caffeinated crack at explaining (grin)! I'm worried that by specifying we must cite everything we get from other sources, ''Citing References...'' inadvertently implies some things don't need to be cited. Which is true for people publishing research or review studies--you don't need to cite ideas original to you--but MEpedia isn't (as I understand it) the place for folks to publish their own novel hypotheses: only things they can cite to another source.
::The other thing is that as UI/UX matter, the longer instructions get, the less likely folks are to read any of them. So repeating may have the opposite of the desired effect, unfortunately. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 13:31, 11 April 2019 (EDT)
:::Generally speaking, the rule of thumb is not to cite things that are considered common knowledge. Therefore, we would not have to cite every sentence of an article, or even every complete thought. I'll check the original article, though, with an eye towards this kind of misinterpretation... ok, I read through. I think that section contains important information regarding that you must cite not just direct quotes, but anyplace where you get an idea, even if you've paraphrased it. You'd be surprised how many people think you don't have to cite unless you've directly quoted someone's work! I'm ok with folding that in to another section if you think it's confusing.[[User:JaimeS|JaimeS]]
::::Ahh ok, thanks [[User:JaimeS|JaimeS]], now I understand what it's intended to convey and def agree makes sense to hit the "cite whether it's paraphrased or quoted" point. I'll see if I can make it sit with the "cite everything [unless common knowledge]"--maybe we can use the quote from that article in a footnote, for sake of concision/hitting the high notes as clearly as possible. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 11 April 2019 (EDT)
:::::Great, [[User:Canele|Canele]]! Thanks for that disambiguation, good looking out. [[User:JaimeS|JaimeS]]
::::::RE: "Common knowledge" - I think this should be made clear that it's general knowledge or common knowledge but not what an editor might consider common knowledge about ME/CFS. Many consider "always caused by a virus" as common knowledge for instance, or consider ME or ME/CFS as a "fatigue" condition. I may consider starting a page on Facts vs Myths to cover some of these. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:17, 15 April 2019 (EDT)
:::::::I did also think it might be good to give an example of common knowledge that it's acceptable not to cite, to help people gauge, but I had a hard time coming up with a good one. "Humans generally have two kidneys"? Better suggestions welcome! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:43, 15 April 2019 (EDT)
::::::::I actually really like the following quotation for citations: "Common knowledge... is widely known, undisputed and easily verified, and it generally cannot be attributed to a specific person or paper". It's a really accurate definition that would stop someone from saying "ME is caused by a virus" because they know it is, in fact, disputed, not easily verified, and is not widely known. Here is where that quote came from, and it may be a good source in general, because it also has examples of common knowledge and questions to ask oneself before we can tell whether something is considered common knowledge: https://www.scribbr.com/plagiarism/common-knowledge/. I think we should define common knowledge as per above, and then make the explicit comment that you can find examples of common knowledge and guidance as to what constitutes common knowledge by clicking here (with link to above).[[User:JaimeS|JaimeS]]
:::::::::: +1 to adding a definition of Common Knowledge to the text. The definition quoted by [[User:JamieS|JamieS]] on this talk thread was helpful in clarifying. [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:37, June 13, 2019 (EDT)

== Honorifics ==

I'm wondering about establishing a policy to standardize use--or not--of titles and honorifics (Dr., Professor, etc.) across MEpedia. I realize this is a challenge given the diversity of usage in different languages, fields, etc. Wikipedia deals with that by never using honorifics and only naming specific degrees and positions held (and only doing so the first time the degree or job is mentioned), and otherwise last name only (after the first use). But, I do see that for most readers of MEpedia, there's likely often value in having someone's title included each time that person is mentioned ("In 2018, Dr. So-and-so wrote a second editorial criticizing...") At the same time, I worry it can be confusing rather than clarifying when people who are MDs, PhDs, and DCs all have the same "Dr" in front of their names--it goes without saying that these are really different qualifications and I'm concerned about misleading readers about what a given person's qualifications are. That's compounded right now by variation within the project: some editors write "Dr. Klimas" every time, others "Dr. Nancy Klimas" once and then "Klimas" subsequently (or some other variation). [[User:JaimeS]], do you or others have thoughts on a rule for handling this to best communicate/contextualize scientific information for a broad audience? (In giving the Klimas example, I'm also realizing setting a consistent standard could also help us reduce unconscious bias.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:32, 13 April 2019 (EDT)
:I'm okay with having this be part of our general formatting. MEpedia 'really' has about 10 regular editors with a few people sweeping in once in awhile, so this will go a long way. However, it may be too much to ask or expect first-time users or someone going into one article to keep this in mind. We will either have lots of corrections to make or we'll have to let it slide sometimes. That said, if we choose a format, then the person's title or degree should be described in detail the first time in any given article (Dr Jane Doe, a professor of Immunology at the University of Y", and not again thereafter -- just using Doe or Jane Doe from then on. [[User:Jaime|Jaime]]
::Full title and specified credentials the first time, then only last name thereafter seems like a good rule to me. And yes agreed: for so many of these things, I don't expect new users to know them off the bat and it's really not a big deal if they mess them up. If anything honestly tidying that sort of thing (what WP calls "wikignoming") makes for a good task on foggy days. Just wanted to decide first what we'd like it to be. But that sounds great, I'll add it (as succinctly as possible). [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:04, 16 April 2019 (EDT)
::: I like that phrase: “wikignoming”. That’s my word of the day!
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 19:16, 16 April 2019 (EDT)
::::Ah, so glad I could share! The wikignome is a venerated figure on WP. We could incorporate the term more here--really helps emphasize how much value many different types of edits add to the project. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 01:26, 17 April 2019 (EDT)
:::::It's just occurred to me that using titles regularly can be problematic because they are changeable. Eg Dr Simon Wessely became Prof, then Sir. When referring to past work or doesn't seem quite right to consistently refer to someone's early work using their current title somehow. I generally use full name in the first instance on a page, and either last name or both names after - except with bio pages where title is relevant. Several pages will refer to several authors with the same surname too. This isn't a big deal to me. I see this as more a Manual of style or editorial thing since it's not about scientific understanding.[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:44, 22 April 2019 (EDT)

==Types of studies ==

This on ''in vivo'' etc is very long and not important. Hardly any research on ME/CFS uses these terms, and if they do they don't make them prominent.

I would prefer to remove this information, or to replace it with Clinical trials information - eg A case study is not a clinical trial, clinical trials will have a trial registration number, difference between Review articles, Editorials or Theories, and Research (eg research involves specific methods and results). [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 11:01, 14 April 2019 (EDT)
:Good idea! We could also make [[MEpedia:In vivo studies]] and [[MEpedia:In vitro studies]]--or just mainspace entries with those topics (honestly we should def do at least the latter, I will see about starting that today)--to offer here as "See also" but yes, I agree it's not among the main issues of science literacy for editing MEpedia well, and we could trim either to make the whole more concise/readable or to make space for other subjects. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:19, 14 April 2019 (EDT)
::I started the mainspace pages ([[In vivo studies]] and [[In vitro studies]]) but def, I can see the usefulness of also having project space pages in case anyone goes seeking more specific guidance on how MEpedia wants these distinctions described. So we could move the info over there rather than delete it. [[User:Notjusttired|Njt]], I'm sure if you have ideas about what should be included instead, they'd be welcome--you could post a mock-up here for discussion? (If you are up for it, no worries if not.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:43, 14 April 2019 (EDT)

:::That sounds good, although the way it's written suggests more suitably for studies involving tissue samples and animal testing - there's no animal model and I am unsure if there's is much that can be tested with tissue samples given the multi-systematic nature and the risk of trying to get samples from the key areas (brain and spinal column, just a little dangerous!).
:::What would be useful would be some of this [https://clinicaltrials.gov/ct2/about-studies/glossary glossary] - I was looking earlier at Phase 1 to Phase 3 descriptions.
:::Also to keep in mind is not to explain very short / simple things - I've requested debtors add the '''Lingo extension''' - it creates a glossary page and links it to anywhere the term is found on any page - so much could be added there rather than separately in Science Guidelines.
:::My 2 big issues with science guidelines are to get editors not to cite Wikipedia or use ME-pedia pages as citations (they should be links), and to get across that science writers publishing only online are often poor sources for science (fine for personal experiences or Articles to link to) - some terrible "science" out there written by a single professional and either not peer reviewed or almost no improvements made. '''Journals''' should be the main source in my view given the lack of textbooks on ME/CFS. Science Direct is also excellent to search for book chapters or topics not specific to ME/CFS. Some clinics have good articles but others are just terrible. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:17, 14 April 2019 (EDT)
::::To your first point, I actually think for instance the [[Bhupesh Prusty]] talk at NIH last week specifically discussed ME/CFS research that does isolate certain kinds of material, and the difference that can make in the findings (see [https://twitter.com/MEActNet/status/1114219970660052992 this Twitter thread]), but I totally agree with you that that is '''far''' more advanced science than the main issues the Science guidelines need to convey to improve the scientific value of MEpedia. Coming over from Wikipedia, I am accustomed to much, much higher standards for what can be included, but I understand where the [[MEpedia:About|mission statement]] is coming from about wanting to gather more than what's verified by review articles. To me the big challenge is getting people specify the quality of the source they're using. Like you say: is it one doctor's opinion? Is it some patients on a forum? Is it a peer-reviewed study? If it is, did have three patients or 300? Etc. That glossary is a really good idea. I don't know how the extension you mention works but I'm also happy to start mainspace entries for some of the most common concepts. For all of this, I'm not remotely qualified to write a textbook-level explanation, but I hope if I can get things started, it's easier for folks who do have the scientific expertise to add on, amend, specify. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:31, 14 April 2019 (EDT)
::::::Everything in that page would be cited anyway - e.g. from a medical dictionary, or a book chapter - science direct's website is excellent for finding book chapters. The page name defaults to [[Terminology]] and it needs particular syntax. 
::::::The huge issue with sources is that there aren't any textbooks on ME/CFS. Not one. All books are based on author's own views or research. Although editors really should be stating in the text where info comes from for single sources, e.g. Jason and Sunquist (2009) stated that... I also disagree with you on Wikipedia standards: the editorial / scientific standards mean anything even remotely controversial can be (intentionally) skewed by editors using extremely poor quality sources which count as tiertary sources because opinions and reviews are given greater weight than objective science - some tierary sources barely have any references. Skeptics (actually disbelievers) rule on Wikipedia and there is a bullying culture in evidence on some pages - all editors do not have equal rights or equal influence. Scientists get marginalized since qualifications don't count. The demographics of Wikipedia editors are not representative of society in general to say the least. Talk pages on controversial topics consist of unfounded accusations of using sock puppets (happened to Angela Kennedy), and I've seen editors regularly move content they don't like to talk pages to tie up other editor's time so it won't be included. We don't have edit wars here. We go for facts, not opinions. If a popular opinion has very weak evidence then repeating it often gives it more weight on Wikipedia. Craziness! Also some editors mis-cite sources - what looks like a good reference turns out not to say that at all. Wessely and Sharpe do the same in their own articles. 
::::::At the moment I think many editors just aren't seeing crucial pages like the Science guidelines or manual of style. I read all the welcome message and How to contribute when I first signed up, but only when an editor pointed out the Manual of style did I find it. 
::::::Editing massage: I'd like to change the message editors see before submitting to include links to Editorial guidelines, Science guidelines, Manual of style, and remind them that Wikipedia and blogs are not science sources, and that "if you can't cite it you can't say it". [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:13, 15 April 2019 (EDT)

== Equivocal versus neutral language ==

Wanted to seek more input about section on equivocal language. It seems to me that it's worth keeping "equivocal" in the title rather than [https://www.me-pedia.org/index.php?title=MEpedia:Science_guidelines&diff=next&oldid=55514 revising to "neutral"] because while editors should definitely describe findings neutrally, that's covered in the [[MEpedia:Editorial_guidelines|editorial guidelines]] whereas this is--it seems to me--making a different point about not overstating how definitive a finding might be. My concern for using "neutral" is that to non-scientists, saying something has been proven can seem entirely neutral ("neutral" to me mostly indicates you shouldn't say "shockingly, it was proven that...") On the other hand, is there a risk that telling people always to equivocate could result in people mischaracterizing results? It's obviously not appropriate to say a finding is equivocal if it's just not. Would welcome input on both best practices in science writing as well as how we can be best convey them to folks not yet familiar with those conventions! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:26, 20 April 2019 (EDT)
:Good point. I changed the wording only to try to simplify the language (improving readability). I'm open to other suggestions - or possibly examples? I feel the language used should be closer to "plain English" - short, simple, clear. I admit I had to lookup unequivocal and didn't make a great choice for an alternative word [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:38, 22 April 2019 (EDT)
::I put it in as equivocal very deliberately. Let's keep that word. [[User:Jaime|Jaime]]

==Important studies and works of age ==
What about listing these in a bullet points? Can we shorten the explanation to maybe 2 sentences. Also [[Holmes criteria]] introduced the term CFS - although somehow [[Fukuda criteria]] took over so this example needs changing. Key works in my view are:
* [[Fukuda criteria]]
* [[Canadian Consensus Criteria]] which are for [[ME/CFS]]
* [[International Consensus Criteria]] for ME
* [[PACE trial]]
* Wilshire et al analysis of PACE
* [[Ramsay definition]]
* McEvedy and Beard (1970) - mass hysteria
* Not sure what's best for biomedical studies? 2 Day exercise one?
* [[York Review]] or [[Cochrane]] unretracted exercise review - that brought in CBT & GET evidence or Original BPS trials eg Fulcher & White 1997

==Do not give advice ==
I have added this to clarify. It is especially relevant when describing treatment protocols or dose suggestions for medications. I added similar to the scientific guidelines. [[User:JaimeS]] [[User:JenB]] [[User:Kmdenmark]] [[User:Pyrrhus]] [[User:Hip]] [[User:DxCFS]] [[User:MEandCFS]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 09:56, 3 May 2019 (EDT)
:This would belong in the science guidelines, not the editorial guidelines. I'll copy this discussion over there.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 14:28, 3 May 2019 (EDT)
:: I agree wholeheartedly not to give medical advice. I feel uncomfortable with the pages that do. It can inadvertently cause harm. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 16:01, 11 May 2019 (EDT)

== "blocks of information" -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:27, June 13, 2019 (EDT) ==

I'm confused by the following "Do your best to avoid ... paraphrasing blocks of information". Would the correct interpretation of this be "it's okay to paraphrase a few sentences, but avoid paraphrasing large blocks of text. Instead, prefer to summarize the key points, and link to the source for readers who want details."?
:Paging [[User:JaimeS]]... :)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:21, June 14, 2019 (EDT)

===Re: "blocks of information" -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:11, June 26, 2019 (EDT)===

: I wouldn't recommend paraphrasing whole paragraphs (multiple sentences in a row). When people paraphrase chunks of text, it's often an uncritical repetition, rather than an integration of ideas. You can see more on this here: https://writing.wisc.edu/handbook/assignments/quotingsources/. Scrolling down to 'How to Paraphrase a Source'.

:::"When reading a passage, try first to understand it as a whole, rather than pausing to write down specific ideas or phrases... choose and summarize the material that helps you make a point...

"METHODS OF PARAPHRASING
:::"Look away from the source then write.
:::"Read the text you want to paraphrase several times until you feel that you understand it and can use your own words to restate it to someone else. Then, look away from the original and rewrite the text in your own words.

:::"....If you find that you can’t do A or B, this may mean that you don’t understand the passage completely..."

This may seem more stylistic than factual, and it is. But as an instructor, I often found that people who paraphrased idea-by-idea for a paragraph or more often didn't understand the text well enough to integrate the idea into the rest. That resulted in work of lower quality.

== "if you can't cite it, you can't say it" ==

I'd like clarification on the spirit of this rule. Should it be interpreted as

* "Do not add text, unless it is either common knowledge or *immediately* supported with a citation." OR
* "Do not add text, unless it is either common knowledge or *possible* to cite it."

FWIW, I would hope it's the latter. While it may not be optimal, I feel like there is value in adding information that the author is certain is in the literature, but does not yet have the citation handy. Often getting an article started is the hardest part, and we facilitate that if we allow some flexibility on citations. Authors can return to add citations later, and other people can help to add missing citations once there is a skeleton of text in place. To support this, I would love if we also had a "citation needed" template like wikipedia.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:45, June 13, 2019 (EDT)

: The second definition also supports the spirit of having various [[MEpedia:How_to_contribute#Roles|Roles]]. Some people are good at distilling down a pile of information to a summary, some people are good at the precision work of citing all key information, and some are good at both. Some people may be good at both, but requiring both at the same time increases friction and may reduce contributions. -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:48, June 13, 2019 (EDT)
::Hi EscapeTheFog! Any questions about the guidelines should probably be directed at [[User:JaimeS]] (note the spelling) She can be hard to get a hold of, but linking to her (nonexistent) user page should trigger an alert for her. (per [[MEpedia:Discussion]])
::For more information on template tags such as "Citation needed", see the [[Tutorial]]. Hope this helps.
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:17, June 14, 2019 (EDT)

===Re: "if you can't cite it, you can't say it" -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:13, June 26, 2019 (EDT)===

: The former! :)

Definitively, we often think we know something is true, especially in a field like ME, where we may have heard it repeated often. However, you hunt down the source and you find it's been misquoted/misinterpreted/doesn't exist... OFTEN.

Moreover, sometimes you find it's just something people ~say~ that has a DUBIOUS source that you'd only know by finding said source.

== Sources to avoid ==

I'm a bit concerned because this contradicts advice we give elsewhere, for instance the outlines that specifically asking for the Wikipedia page, or, lower down on this page, explaining that it's a good source of sources, just not a good thing to cite directly. Additionally, I'm not sure I agree with the idea a doctor's website should never be cite: to me the more important thing (similar to the Wikipedia issue) is making sure the editor understands and documents for the reader what exactly a source can and cannot be considered reliable for. A doctor's website is probably pretty reliable for documenting that doctor's opinion, which may be of interest to the community even if it differs from consensus (or more often, if there is no consensus). The important thing is that the prose make clear when something is individual opinion and not consensus. So I'm wondering if these warnings could be converted into more "advice for handling sources" rather than telling people they can't use them at all. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 21:34, July 13, 2019 (EDT)
:I was hoping for some good feedback on this. Thank you.
:It might help to look this [https://www.me-pedia.org/index.php?title=Overtraining_syndrome&oldid=51563#cite_ref-1 old version] for what I'm trying to avoid - especially sources 1, 3, and 9 (the last is a doctor), look at the mentions of Lyme and symptoms list. 
:'''Wikipedia''' is best removed from the Article outlines in my view. A link to webmd, merckx msnuals or scienxedirect's search results would be much better. But linking to it wikipedia learn more is not the same as citing it. The [[MEpedia:Editorial_guidelines]] already point out Wikipedia is not reliable so I think we are being consistent. We could change the wording of the new section to suggest '''reading''' the References section on Wikipedia only for suggested sources, but I think ''linking'' to Wikipedia as a source is not OK. I've just been trying to sort out another page that actually linked to a numbered Wikipedia reference rather than the reference itself. Bear in mind also that some of what we cover are "contested" diagnoses, and Wikipedians are not representative of the general population - they are prominently young, male, single, childless (none of which are bad things but limited life experience), lacking in a biological or health background and in my experience highly skeptical and prone to promote minority opinions, regardless of new facts. 
:I'm finding '''doctors websites''' frequently used for key information that should be taken from elsewhere - or containing various misunderstandings - like symptoms of a poorly understood condition - which actually don't match the proposed diagnostic symptoms and probably cover half the population - and for unproven benefits of various supplements. So many doctors use "Chronic fatigue" and "Chronic fatigue syndrome" interchangeably, others claim to have found a cure (and they will sell you it). Dr Axe has "4 ways to overcome CFS" - with a few references that he massively overstates - treatments we certainly don't to claim are effective based on that. The single source he uses is a normal article suggesting that those treatments should be investigated further - not the same as Dr Axe claiming they are the "most promising treatments" for CFS. [https://drrondrucker.com/cfs This doctor] claims CFS is an autoimmune gut condition, and only 8 months of his non-prescription pills will treat it - that's not something we should cite on the Autoimmunity hypothesis page which is one of the harder places to get sources (OMF research is looking into autoimmunity at the moment). Any doctor's website with no sources on the article shouldn't be used (unless perhaps it's a well known expert in the field or they are cited on a page about the treatment they themselves have invented eg Dr Gupta on the Gupta programme page). Doctor's websites often promote whatever their niche treatments are - eg the "leaky gut" doctors will list 30 symptoms and that's their opinion - based on no actual studies at all, but gets cited as if it's fact. There's also a tiny number of atrocitious websites with a single author and single reviewer that just make things up (patient.co.uk actually invented totally false information a few years ago - didn't even get the classification or symptoms right - this has happened on several pages there.) There's also many references to "verywellhealth" that are actually just blogs by people with the illness but get cited as medical facts. So, that's what I'm trying to address. There's a real avoidance of peer reviewed journals too, in favor of unreferenced websites. I'm certainly open to suggestion. :'''YouTube''' videos might be something else that shouldn't be cited as a reference (unless it's explaining a clinical trial, treatment or clearly described as an opinion). Linking to it is fine, or embedding on the page to support referenced facts. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:22, July 14, 2019 (EDT)
:: I think it might be helpful to us to start a policy whereby any changes to the guidelines are discussed before they are implemented. These are really good ideas being raised, it would be nice to get them right. Just my 2 cents!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:31, July 15, 2019 (EDT)

===Re: Sources to avoid -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 11:42, July 15, 2019 (EDT)===

: Hmm.

: Rather than saying we can never use a doctor's website, I think it's more appropriate to say that PRIMARY sources are always, always preferable to SECONDARY sources. If a doctor cites a statistic and doesn't say where it's from, and you can't find the PRIMARY source, you shouldn't cite it. In fact, I'm surprised that this adjuration doesn't already exist somewhere. It's kind of vital to citation prioritization! The same goes for Wikipedia: it's a good place to hunt down PRIMARY sources. One wouldn't cite Wikipedia itself, and that should have been clear in the guidelines' original incarnation.

: We can also clarify the citation of facts versus opinions or theories. For example, let's say someone wants to reference Myhill's theories. She hasn't published often, but she's influenced a great number of patients' ideas about the disease, and treated a great number of patients; and anyway, we'd be citing her work as theory, not fact.

"Many researchers have found mitochondrial dysfunction" <-- cites Myhill's site [NOPE]

"Some clinicians, such as Dr Myhill, have treated people with ME with supplements geared to augment mitochondrial dysfunction" <-- cites Myhill's site [YES]

: I do agree we should talk about any changes on policy pages before implementing them.
:::I should have discussed here first. My apologizes. Dr Myhill may be very popular but she has had complaints to the GMC and been forced to change her website to a degree as a result, not so much about ME but her anti-vaccine statements. What about changing the doctor one to: 
"Information from a doctor's website must be verified for accuracy (read the original sources used), or presented as a minority opinion only, and not used for the introduction or symptom lists"
:::Re: Types of sources. Primary / secondary / tiertary are confusing teens to many. Wikipedia relies on tertiary eg systematic reviews like Cochrane or encyclopedia. We have very few and they are typically biased in ME or CFS Research. We actually prefer primary (eg peer reviewed articles) and secondary (Consensus statements, guidelines, etc). I find many charity websites to be very accurate, if articles are referenced. I think it would be better to talk about '''verifiable sources''' and '''academic sources'''. Perhaps with unreferenced articles from doctors/physios/etc considered one of the lowest quality of sources, only to cited as Dr X claims / believes / views that ...
:::I think it would be a positive to have an outright ban on using perhaps up to 5 extremely low quality websites that rank highly, including Wikipedia, but allow them under "learn more" or "articles and blogs" links since many explain patient experiences or different minority but valuable views. A few websites could be included due to being inaccessible in outside the country of origin - [[User:Pyrrhus]] has raised this before.
:::Feedback would also be welcome on proposed changes to the [[Template_talk:Cleanup|Cleanup template]] including links to scientific guidelines and being able to pick a default message to add to. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 12:10, July 15, 2019 (EDT)

== Sources to be careful with ==
* Unreferenced articles: If the article you are referencing does not list its own references at the end of the article, it’s probably not a reliable scientific reference.
* Blogs may be useful references when talking about the blog author or advocacy in general, but blogs should never be used as a reference for scientific evidence, as they are not peer-reviewed.
* A doctor's website may be a good source when talking about the doctor or the doctor’s ideas, but a doctor's website should not be used as a reference for scientific evidence. Doctor websites often reflect the doctor's opinion rather than an expert consensus.
* Wikipedia or other wikis may be good to list under the “Learn more” section of an article, but they should not be used as a reliable reference. You may, however, find a reliable reference in the “References” section of a Wikipedia article.
* Generally speaking, be aware that sources that are not published in a peer reviewed journal or an edited book may reflect only the authors' opinion.
* And remember that it’s always best to hunt down the original source of an idea you are citing. If your source merely cites a different source for that idea, it is best to use the original (“primary”) source instead of a copycat (“secondary”) source. However, secondary sources are fine if they are published review articles or consensus statements.
Feel free to edit what's above. I left "Sources best avoided" with just "Unreferenced articles" below it in the science guidelines [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 10:09, July 17, 2019 (EDT)
:I have made my changes. I changed “Sources to avoid” to “Sources to be careful with” to allow for nuance. It may be a good idea to substitute “Wikipedia” in the “Learn more” sections of the article outlines with “Outside articles: e.g. Wikipedia, WebMD, Merck Manual, or ScienceDirect”. I haven’t really come across any attempts to use a YouTube video as a scientific reference, so I’m not sure it needs a mention. The only reference we had to remove because it was only accessible in the UK was the British Prescription Drug Formulary.
:That’s what I’ve got. Any changes you would like to make [[User:JaimeS]] [[User:Canele]]?
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:40, July 20, 2019 (EDT)
:[[User:JaimeS|JaimeS]] I like the more detailed work above.

===Re: Sources to be careful with -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 16:14, September 16, 2019 (EDT)===

: Replace this text with your reply

==Scientific consensus ==
I suggest adding this heading and stating typical places where this can be found, eg IACFS Primer, CCC, ICC, IOM report. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:51, August 8, 2019 (EDT)
:The term has different meanings: outcome or method. I either case: not feasible. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:05, September 16, 2019 (EDT)

==Contested evidence ==
*How do we report on research on a researcher's page when there is substantial evidence or the conclusions from a piece of research are contested? Eg X does a clinical trial saying the Lightning Process is effective, but the Lightning Process page (and scientific consensus) says the opposite. This goes to neutral POV (point of view).
*1. If most of the researcher's evidence is contested do we use maybe a single major source to refute each, or put it all in a Criticisms section instead? Or do both? I'm uncomfortable writing things like "and X reported that medically unexplained symptoms (MUS) including CFS..." when CFS isn't categorized as MUS - that's a minority opinion. Is it better to put ''X regards CFS as medically unexplained symptoms (MUS), and X's study on antidepressants for MUS found...'' - Would mentioning limitations reported by the study (if it does), or by others be helpful? Eg use of broad Oxford criteria, drop out rates, being very specific about severity or how many improved.
2. Bias: Wikipedia has a list of [https://en.wikipedia.org/wiki/Wikipedia:Manual_of_Style/Words_to_watch words to watch] that suggest biased writing, these might be best in the editorial guidelines, but I think it useful to link to them here. Eg claim - "X claimed that..." is considered likely bias.
*3. Experts- Wikipedia gives the same weight to all regardless of qualifications / Special interests (I personally hate this - experts should not always have authority but they are experts!) - what's our view?
*4. Neutral point of view - [[Esther Crawley]]'s page is one of our top 10, it's not neutral in my view. What guidelines can help with this?
*5. A few pages have a list of articles on a particular point of view (list of articles explaining CBT not approx got CFS) - do we insist that an opposite list must also exist, and what about scientific consensus, if it supports the view that the list has do we still need the opposite?
*6. I find it very hard to work out if some topics are scientific or editorial guidelines. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:51, August 8, 2019 (EDT)
==Minor suggestions from last update ==
*[[Objective outcome]]s more reliable than [[subjective outcome]]s (e.g. step counters vs questionnaires)
*RCTs: objective outcomes vs subjective to mention? How to compare double blind with subjective outcomes better than unblinded with objective outcomes?
*Systematic reviews are often given more weight elsewhere than RCTs, do we have a policy on this given they major issues with certain systematic reviews eg the York Review used by the NHS, and Cochrane's
*Consider linking to [[:Category:Research terminology]] (although this does need work)

* Is it worth pointing out that close attention should be paid to the diagnostic criteria used, eg CCC selects more severely ill patients and less patients than Fukuda CFS criteria or SEID criteria, Fukuda more than Oxford

* Trials with [[pre-specified outcome]]s given more weight except when [[outcome switching]] occurs?
*Possibly link to [[Research bias in ME/CFS]] or the research terminology category. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:52, September 16, 2019 (EDT)
:With the exception of selection criteria (encompassing more than just diagnostic criteria), which should be mentioned: you can't capture everything with rules. Experienced editors will weigh the evidence on a case-by-case basis. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:02, September 16, 2019 (EDT)

MEpedia talk:Science guidelines

2019-09-16T21:02:25Z

Guido den Broeder:/* Minor suggestions from last update */ can't capture everything with rules

== Old ideas ==

Some possible ideas to consider:

1) Quality of references: should be peer-reviewed journal articles or reputable textbooks

2) In the absence of good research, anecdotes can be cited under certain conditions (what conditions?) so long as in the text of the article, the information is not passed off as an established fact and the source of the information is clear. For example, "some clinicians have observed...." or "many patients have reported...." There still needs to be an external citation.

3) Avoid where possible citing health blogs or other third party sources for information that is considered to be scientific fact, especially where a first party source (i.e., a journal article) is available. Blogs, forums, etc. *can* on a case by case basis be reasonable sources for anecdotal or observational information.

4) Where available, always report both negative and positive results. If you do a search for, say, muscle biopses in ME patients, report both the studies that found evidence of abnormalities and studies that did not.

5) Where possible, report information about the design of a specific study or series of studies if they help the reader to grasp the quality and reliability of the findings. For example you might point out features of the design that decrease our confidence in the outcome: small sample sizes, lack of controls, open label. You might also point out information about the design that increase our confidence: randomized, double blind, large N, proper controls, finding replicated. This does not need to be done in great detail but you might say, "Several small n studies have found...." Or "A large, randomized trial found......"

--[[User:Meaction|Meaction]] ([[User talk:Meaction|talk]]) 13:41, 21 November 2015 (PST)

{{collapse top}}
== Volunteer Slack? ==

Under the "Less is more" subsection, it says "go to the Volunteer Slack".
 What is a "Volunteer Slack"???
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:31, 14 March 2019 (EDT)
:[[User:Pyrrhus|Pyrrhus]], Slack is a technology that's basically a very fancy chatroom service; you can make a Slack for a specific group and then it offers the possibility of having different, easily searchable threads for different topics. I take it there is an MEpedia Slack, although I'm not part of it and don't know the Slack's name or who to ask for an invite, so eventually we should probably try to find out how users who wish to can join (personally I don't love using it; I find it overstimulating and would rather discuss with editors here, but it's good to offer different options as different people will undoubtedly have a variety of different preferences and accessibility requirements.) Meanwhile if you want, you can check out the tech at Slack.com though; the basic service is free, you only pay for upgrades (like storage if your group has more than 10,000 messages, etc.) Poking around, I do see an MEAction Volunteers Slack (meaction.slack.com) and you can sign into it if you have an meaction.net email address. But I don't know if MEpedia has a separate one or if MEpedia is a "channel" in that one; also don't know if you have to get an meaction.net email or if possibly existing members (or especially, moderators) can add send invites to others to join the Slack, if that is the right one. So many questions! Sorry I'm probably giving more questions than answers here! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:29, 19 March 2019 (EDT)
::Thank you so much [[User:Canele|Canele]]! That is very very informative. I prefer discussing things here on MEpedia too, but we desperately need to enable communication between contributors any way we can. I'll ask around to see how I could join. Now, whom do I ask? ''That'' would be a good question for the Slack group! ;)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:12, 19 March 2019 (EDT)
:::The best bet as far as I know would be [[User:JenB]], or maybe she can suggest who best to go to with MEpedia questions if it's someone else? (I'd also love to ask about either adding to the [[MediaWiki_talk:Captcha-addurl-whitelist|CAPTCHA whitelist]] or getting set up to take of that myself, which I'd be happy to do, just don't know who best to ask for the necessary permissions.) Thanks for any guidance! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:13, 19 March 2019 (EDT)
::::I’m now in the Slack group, so if there’s anything you want me to bring up, let me know. The CAPTCHA whitelist has already been brought up. Is the only thing needed there is admin privs to edit the file? Or is the CAPTCHA whitelist more complicated than that?
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:02, 29 March 2019 (EDT)
::::::Oh, thanks so much [[User:Pyrrhus|Pyrrhus]]. Yeah as best I can tell, it's just admin permissions that's required to edit that page and then appropriate URLs only need be pasted in. As Njt has pointed out, the best would be if we could set up a user right group that automatically turned off the CAPTCHA for trusted users (discussed further here: [[MediaWiki_talk:Captcha-addurl-whitelist#Regex_for_Whitelist]]), but setting that up is beyond my personal technological capacities, so until someone who is capable has the time to take up that project, I think granting someone who is around more (you, me, whomever) permission to add to the white list would go a long way to improving accessibility. (My personal opinion would be that whomever is delegated that authority should only whitelist the most rock-solid science and reference sites. Other kinds of sites are important to include on MEpedia but I've seen a fair number of places where they're not used in accordance with [[MEpedia:Science guidelines]] and I think it maybe wise to leave the speed bump up at least for now.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::[[User:Canele]] If you wanted to join Slack's MEpedia group you can email the info meaction.net email address, on contact [[User:JaimeS]]. Some discussion goes on in the Facebook group (linked to from the MEAction website) but not much. I have recently discovered that auto confirm by email address may remove the Captcha, fixing the email feature has been flagged up since there's a new issue with it. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 18:42, 29 March 2019 (EDT)
::::::Thanks [[User:Notjusttired|Njt]] for the head's up about how to join the Slack. I may do so later; I find the tech a little overstimulating so I like discussing here where things don't move quite as rapidly. Meanwhile though, that sure would be great if eventually there were an automatic user right to disable the CAPTCHA. I suppose one thing I would say is, my ideal world would disable the CAPTCHA after a user has made a certain number of manual edits (500?) rather than just after confirming their email address, because it's so easy for spammers to dummy up an email address, confirm it, and then go to town. On a site about science, I do worry about manipulation by folks with a financial interest. But, we'll wait to see what's possible, I suppose? [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::::That's a good suggestion on number of edits - could be put in the Dev queue. I would set it much lower - say 50 edits - the Captcha is easy to lookup for people so I presume it's mostly there to stop robots / automated edits. With automated edits I'm not sure how easy it is for robots to do the email confirm or if any have tried. Njt [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:14, 30 March 2019 (EDT)
::::::::Good idea, I'll add it to the dev queue! You're probably right that 50 would do the job for now. I know Wikipedia deals with folks that for-profit, not-necessarily-reliable sites are paying to go in and manually add many links to that site; I was thinking the CAPTCHA would be at least a speed bump for that. But no real reason to have it be so high until/unless that becomes an issue here. I assume once that feature is in place, it wouldn't be so hard to adjust the specific number. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:21, 30 March 2019 (EDT)

== Rename to MEpedia:Science guidelines ==

Any objection if this page "Science Guidelines" is renamed to "MEpedia:Science guidelines"?
 Since this page is about the MEpedia project itself, it really should belong in the MEpedia namespace. ("MEpedia:")
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:43, 18 March 2019 (EDT)
:I'm for it! (Again!) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 19 March 2019 (EDT)
::Done!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:04, 29 March 2019 (EDT)
{{collapse bottom}}

== Deleting "When should I cite?" ==

Any objections to deleting the "When should I cite?" instruction? I feel like it's already (and more accurately) covered in the preceding "If you can't cite it, you can't say it" instruction. Using ''Citing References in Scientific Research Papers'' makes sense for those doing primary research since original arguments/findings don't need to be cited--but here (I think) we want everything added to be referenced so that readers should be able to go check to see what verifies a given claim, rather than having to trust whichever random editor who made the change was actually correct. Right? Thoughts? (Sorry, tired, this might not be clear.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 00:38, 11 April 2019 (EDT)
:I’m not sure I understand, but I’ll tag [[User:JaimeS]] because she’s the Science Editor and she can give a definitive yes or no. As a general rule, I think we want to drill into people that everything needs to cited, even if we repeat our selves. Hope this helps.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:02, 11 April 2019 (EDT)
::Let me take another, more caffeinated crack at explaining (grin)! I'm worried that by specifying we must cite everything we get from other sources, ''Citing References...'' inadvertently implies some things don't need to be cited. Which is true for people publishing research or review studies--you don't need to cite ideas original to you--but MEpedia isn't (as I understand it) the place for folks to publish their own novel hypotheses: only things they can cite to another source.
::The other thing is that as UI/UX matter, the longer instructions get, the less likely folks are to read any of them. So repeating may have the opposite of the desired effect, unfortunately. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 13:31, 11 April 2019 (EDT)
:::Generally speaking, the rule of thumb is not to cite things that are considered common knowledge. Therefore, we would not have to cite every sentence of an article, or even every complete thought. I'll check the original article, though, with an eye towards this kind of misinterpretation... ok, I read through. I think that section contains important information regarding that you must cite not just direct quotes, but anyplace where you get an idea, even if you've paraphrased it. You'd be surprised how many people think you don't have to cite unless you've directly quoted someone's work! I'm ok with folding that in to another section if you think it's confusing.[[User:JaimeS|JaimeS]]
::::Ahh ok, thanks [[User:JaimeS|JaimeS]], now I understand what it's intended to convey and def agree makes sense to hit the "cite whether it's paraphrased or quoted" point. I'll see if I can make it sit with the "cite everything [unless common knowledge]"--maybe we can use the quote from that article in a footnote, for sake of concision/hitting the high notes as clearly as possible. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 11 April 2019 (EDT)
:::::Great, [[User:Canele|Canele]]! Thanks for that disambiguation, good looking out. [[User:JaimeS|JaimeS]]
::::::RE: "Common knowledge" - I think this should be made clear that it's general knowledge or common knowledge but not what an editor might consider common knowledge about ME/CFS. Many consider "always caused by a virus" as common knowledge for instance, or consider ME or ME/CFS as a "fatigue" condition. I may consider starting a page on Facts vs Myths to cover some of these. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:17, 15 April 2019 (EDT)
:::::::I did also think it might be good to give an example of common knowledge that it's acceptable not to cite, to help people gauge, but I had a hard time coming up with a good one. "Humans generally have two kidneys"? Better suggestions welcome! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:43, 15 April 2019 (EDT)
::::::::I actually really like the following quotation for citations: "Common knowledge... is widely known, undisputed and easily verified, and it generally cannot be attributed to a specific person or paper". It's a really accurate definition that would stop someone from saying "ME is caused by a virus" because they know it is, in fact, disputed, not easily verified, and is not widely known. Here is where that quote came from, and it may be a good source in general, because it also has examples of common knowledge and questions to ask oneself before we can tell whether something is considered common knowledge: https://www.scribbr.com/plagiarism/common-knowledge/. I think we should define common knowledge as per above, and then make the explicit comment that you can find examples of common knowledge and guidance as to what constitutes common knowledge by clicking here (with link to above).[[User:JaimeS|JaimeS]]
:::::::::: +1 to adding a definition of Common Knowledge to the text. The definition quoted by [[User:JamieS|JamieS]] on this talk thread was helpful in clarifying. [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:37, June 13, 2019 (EDT)

== Honorifics ==

I'm wondering about establishing a policy to standardize use--or not--of titles and honorifics (Dr., Professor, etc.) across MEpedia. I realize this is a challenge given the diversity of usage in different languages, fields, etc. Wikipedia deals with that by never using honorifics and only naming specific degrees and positions held (and only doing so the first time the degree or job is mentioned), and otherwise last name only (after the first use). But, I do see that for most readers of MEpedia, there's likely often value in having someone's title included each time that person is mentioned ("In 2018, Dr. So-and-so wrote a second editorial criticizing...") At the same time, I worry it can be confusing rather than clarifying when people who are MDs, PhDs, and DCs all have the same "Dr" in front of their names--it goes without saying that these are really different qualifications and I'm concerned about misleading readers about what a given person's qualifications are. That's compounded right now by variation within the project: some editors write "Dr. Klimas" every time, others "Dr. Nancy Klimas" once and then "Klimas" subsequently (or some other variation). [[User:JaimeS]], do you or others have thoughts on a rule for handling this to best communicate/contextualize scientific information for a broad audience? (In giving the Klimas example, I'm also realizing setting a consistent standard could also help us reduce unconscious bias.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:32, 13 April 2019 (EDT)
:I'm okay with having this be part of our general formatting. MEpedia 'really' has about 10 regular editors with a few people sweeping in once in awhile, so this will go a long way. However, it may be too much to ask or expect first-time users or someone going into one article to keep this in mind. We will either have lots of corrections to make or we'll have to let it slide sometimes. That said, if we choose a format, then the person's title or degree should be described in detail the first time in any given article (Dr Jane Doe, a professor of Immunology at the University of Y", and not again thereafter -- just using Doe or Jane Doe from then on. [[User:Jaime|Jaime]]
::Full title and specified credentials the first time, then only last name thereafter seems like a good rule to me. And yes agreed: for so many of these things, I don't expect new users to know them off the bat and it's really not a big deal if they mess them up. If anything honestly tidying that sort of thing (what WP calls "wikignoming") makes for a good task on foggy days. Just wanted to decide first what we'd like it to be. But that sounds great, I'll add it (as succinctly as possible). [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:04, 16 April 2019 (EDT)
::: I like that phrase: “wikignoming”. That’s my word of the day!
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 19:16, 16 April 2019 (EDT)
::::Ah, so glad I could share! The wikignome is a venerated figure on WP. We could incorporate the term more here--really helps emphasize how much value many different types of edits add to the project. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 01:26, 17 April 2019 (EDT)
:::::It's just occurred to me that using titles regularly can be problematic because they are changeable. Eg Dr Simon Wessely became Prof, then Sir. When referring to past work or doesn't seem quite right to consistently refer to someone's early work using their current title somehow. I generally use full name in the first instance on a page, and either last name or both names after - except with bio pages where title is relevant. Several pages will refer to several authors with the same surname too. This isn't a big deal to me. I see this as more a Manual of style or editorial thing since it's not about scientific understanding.[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:44, 22 April 2019 (EDT)

==Types of studies ==

This on ''in vivo'' etc is very long and not important. Hardly any research on ME/CFS uses these terms, and if they do they don't make them prominent.

I would prefer to remove this information, or to replace it with Clinical trials information - eg A case study is not a clinical trial, clinical trials will have a trial registration number, difference between Review articles, Editorials or Theories, and Research (eg research involves specific methods and results). [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 11:01, 14 April 2019 (EDT)
:Good idea! We could also make [[MEpedia:In vivo studies]] and [[MEpedia:In vitro studies]]--or just mainspace entries with those topics (honestly we should def do at least the latter, I will see about starting that today)--to offer here as "See also" but yes, I agree it's not among the main issues of science literacy for editing MEpedia well, and we could trim either to make the whole more concise/readable or to make space for other subjects. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:19, 14 April 2019 (EDT)
::I started the mainspace pages ([[In vivo studies]] and [[In vitro studies]]) but def, I can see the usefulness of also having project space pages in case anyone goes seeking more specific guidance on how MEpedia wants these distinctions described. So we could move the info over there rather than delete it. [[User:Notjusttired|Njt]], I'm sure if you have ideas about what should be included instead, they'd be welcome--you could post a mock-up here for discussion? (If you are up for it, no worries if not.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:43, 14 April 2019 (EDT)

:::That sounds good, although the way it's written suggests more suitably for studies involving tissue samples and animal testing - there's no animal model and I am unsure if there's is much that can be tested with tissue samples given the multi-systematic nature and the risk of trying to get samples from the key areas (brain and spinal column, just a little dangerous!).
:::What would be useful would be some of this [https://clinicaltrials.gov/ct2/about-studies/glossary glossary] - I was looking earlier at Phase 1 to Phase 3 descriptions.
:::Also to keep in mind is not to explain very short / simple things - I've requested debtors add the '''Lingo extension''' - it creates a glossary page and links it to anywhere the term is found on any page - so much could be added there rather than separately in Science Guidelines.
:::My 2 big issues with science guidelines are to get editors not to cite Wikipedia or use ME-pedia pages as citations (they should be links), and to get across that science writers publishing only online are often poor sources for science (fine for personal experiences or Articles to link to) - some terrible "science" out there written by a single professional and either not peer reviewed or almost no improvements made. '''Journals''' should be the main source in my view given the lack of textbooks on ME/CFS. Science Direct is also excellent to search for book chapters or topics not specific to ME/CFS. Some clinics have good articles but others are just terrible. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:17, 14 April 2019 (EDT)
::::To your first point, I actually think for instance the [[Bhupesh Prusty]] talk at NIH last week specifically discussed ME/CFS research that does isolate certain kinds of material, and the difference that can make in the findings (see [https://twitter.com/MEActNet/status/1114219970660052992 this Twitter thread]), but I totally agree with you that that is '''far''' more advanced science than the main issues the Science guidelines need to convey to improve the scientific value of MEpedia. Coming over from Wikipedia, I am accustomed to much, much higher standards for what can be included, but I understand where the [[MEpedia:About|mission statement]] is coming from about wanting to gather more than what's verified by review articles. To me the big challenge is getting people specify the quality of the source they're using. Like you say: is it one doctor's opinion? Is it some patients on a forum? Is it a peer-reviewed study? If it is, did have three patients or 300? Etc. That glossary is a really good idea. I don't know how the extension you mention works but I'm also happy to start mainspace entries for some of the most common concepts. For all of this, I'm not remotely qualified to write a textbook-level explanation, but I hope if I can get things started, it's easier for folks who do have the scientific expertise to add on, amend, specify. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:31, 14 April 2019 (EDT)
::::::Everything in that page would be cited anyway - e.g. from a medical dictionary, or a book chapter - science direct's website is excellent for finding book chapters. The page name defaults to [[Terminology]] and it needs particular syntax. 
::::::The huge issue with sources is that there aren't any textbooks on ME/CFS. Not one. All books are based on author's own views or research. Although editors really should be stating in the text where info comes from for single sources, e.g. Jason and Sunquist (2009) stated that... I also disagree with you on Wikipedia standards: the editorial / scientific standards mean anything even remotely controversial can be (intentionally) skewed by editors using extremely poor quality sources which count as tiertary sources because opinions and reviews are given greater weight than objective science - some tierary sources barely have any references. Skeptics (actually disbelievers) rule on Wikipedia and there is a bullying culture in evidence on some pages - all editors do not have equal rights or equal influence. Scientists get marginalized since qualifications don't count. The demographics of Wikipedia editors are not representative of society in general to say the least. Talk pages on controversial topics consist of unfounded accusations of using sock puppets (happened to Angela Kennedy), and I've seen editors regularly move content they don't like to talk pages to tie up other editor's time so it won't be included. We don't have edit wars here. We go for facts, not opinions. If a popular opinion has very weak evidence then repeating it often gives it more weight on Wikipedia. Craziness! Also some editors mis-cite sources - what looks like a good reference turns out not to say that at all. Wessely and Sharpe do the same in their own articles. 
::::::At the moment I think many editors just aren't seeing crucial pages like the Science guidelines or manual of style. I read all the welcome message and How to contribute when I first signed up, but only when an editor pointed out the Manual of style did I find it. 
::::::Editing massage: I'd like to change the message editors see before submitting to include links to Editorial guidelines, Science guidelines, Manual of style, and remind them that Wikipedia and blogs are not science sources, and that "if you can't cite it you can't say it". [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:13, 15 April 2019 (EDT)

== Equivocal versus neutral language ==

Wanted to seek more input about section on equivocal language. It seems to me that it's worth keeping "equivocal" in the title rather than [https://www.me-pedia.org/index.php?title=MEpedia:Science_guidelines&diff=next&oldid=55514 revising to "neutral"] because while editors should definitely describe findings neutrally, that's covered in the [[MEpedia:Editorial_guidelines|editorial guidelines]] whereas this is--it seems to me--making a different point about not overstating how definitive a finding might be. My concern for using "neutral" is that to non-scientists, saying something has been proven can seem entirely neutral ("neutral" to me mostly indicates you shouldn't say "shockingly, it was proven that...") On the other hand, is there a risk that telling people always to equivocate could result in people mischaracterizing results? It's obviously not appropriate to say a finding is equivocal if it's just not. Would welcome input on both best practices in science writing as well as how we can be best convey them to folks not yet familiar with those conventions! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:26, 20 April 2019 (EDT)
:Good point. I changed the wording only to try to simplify the language (improving readability). I'm open to other suggestions - or possibly examples? I feel the language used should be closer to "plain English" - short, simple, clear. I admit I had to lookup unequivocal and didn't make a great choice for an alternative word [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:38, 22 April 2019 (EDT)
::I put it in as equivocal very deliberately. Let's keep that word. [[User:Jaime|Jaime]]

==Important studies and works of age ==
What about listing these in a bullet points? Can we shorten the explanation to maybe 2 sentences. Also [[Holmes criteria]] introduced the term CFS - although somehow [[Fukuda criteria]] took over so this example needs changing. Key works in my view are:
* [[Fukuda criteria]]
* [[Canadian Consensus Criteria]] which are for [[ME/CFS]]
* [[International Consensus Criteria]] for ME
* [[PACE trial]]
* Wilshire et al analysis of PACE
* [[Ramsay definition]]
* McEvedy and Beard (1970) - mass hysteria
* Not sure what's best for biomedical studies? 2 Day exercise one?
* [[York Review]] or [[Cochrane]] unretracted exercise review - that brought in CBT & GET evidence or Original BPS trials eg Fulcher & White 1997

==Do not give advice ==
I have added this to clarify. It is especially relevant when describing treatment protocols or dose suggestions for medications. I added similar to the scientific guidelines. [[User:JaimeS]] [[User:JenB]] [[User:Kmdenmark]] [[User:Pyrrhus]] [[User:Hip]] [[User:DxCFS]] [[User:MEandCFS]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 09:56, 3 May 2019 (EDT)
:This would belong in the science guidelines, not the editorial guidelines. I'll copy this discussion over there.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 14:28, 3 May 2019 (EDT)
:: I agree wholeheartedly not to give medical advice. I feel uncomfortable with the pages that do. It can inadvertently cause harm. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 16:01, 11 May 2019 (EDT)

== "blocks of information" -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:27, June 13, 2019 (EDT) ==

I'm confused by the following "Do your best to avoid ... paraphrasing blocks of information". Would the correct interpretation of this be "it's okay to paraphrase a few sentences, but avoid paraphrasing large blocks of text. Instead, prefer to summarize the key points, and link to the source for readers who want details."?
:Paging [[User:JaimeS]]... :)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:21, June 14, 2019 (EDT)

===Re: "blocks of information" -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:11, June 26, 2019 (EDT)===

: I wouldn't recommend paraphrasing whole paragraphs (multiple sentences in a row). When people paraphrase chunks of text, it's often an uncritical repetition, rather than an integration of ideas. You can see more on this here: https://writing.wisc.edu/handbook/assignments/quotingsources/. Scrolling down to 'How to Paraphrase a Source'.

:::"When reading a passage, try first to understand it as a whole, rather than pausing to write down specific ideas or phrases... choose and summarize the material that helps you make a point...

"METHODS OF PARAPHRASING
:::"Look away from the source then write.
:::"Read the text you want to paraphrase several times until you feel that you understand it and can use your own words to restate it to someone else. Then, look away from the original and rewrite the text in your own words.

:::"....If you find that you can’t do A or B, this may mean that you don’t understand the passage completely..."

This may seem more stylistic than factual, and it is. But as an instructor, I often found that people who paraphrased idea-by-idea for a paragraph or more often didn't understand the text well enough to integrate the idea into the rest. That resulted in work of lower quality.

== "if you can't cite it, you can't say it" ==

I'd like clarification on the spirit of this rule. Should it be interpreted as

* "Do not add text, unless it is either common knowledge or *immediately* supported with a citation." OR
* "Do not add text, unless it is either common knowledge or *possible* to cite it."

FWIW, I would hope it's the latter. While it may not be optimal, I feel like there is value in adding information that the author is certain is in the literature, but does not yet have the citation handy. Often getting an article started is the hardest part, and we facilitate that if we allow some flexibility on citations. Authors can return to add citations later, and other people can help to add missing citations once there is a skeleton of text in place. To support this, I would love if we also had a "citation needed" template like wikipedia.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:45, June 13, 2019 (EDT)

: The second definition also supports the spirit of having various [[MEpedia:How_to_contribute#Roles|Roles]]. Some people are good at distilling down a pile of information to a summary, some people are good at the precision work of citing all key information, and some are good at both. Some people may be good at both, but requiring both at the same time increases friction and may reduce contributions. -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:48, June 13, 2019 (EDT)
::Hi EscapeTheFog! Any questions about the guidelines should probably be directed at [[User:JaimeS]] (note the spelling) She can be hard to get a hold of, but linking to her (nonexistent) user page should trigger an alert for her. (per [[MEpedia:Discussion]])
::For more information on template tags such as "Citation needed", see the [[Tutorial]]. Hope this helps.
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:17, June 14, 2019 (EDT)

===Re: "if you can't cite it, you can't say it" -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:13, June 26, 2019 (EDT)===

: The former! :)

Definitively, we often think we know something is true, especially in a field like ME, where we may have heard it repeated often. However, you hunt down the source and you find it's been misquoted/misinterpreted/doesn't exist... OFTEN.

Moreover, sometimes you find it's just something people ~say~ that has a DUBIOUS source that you'd only know by finding said source.

== Sources to avoid ==

I'm a bit concerned because this contradicts advice we give elsewhere, for instance the outlines that specifically asking for the Wikipedia page, or, lower down on this page, explaining that it's a good source of sources, just not a good thing to cite directly. Additionally, I'm not sure I agree with the idea a doctor's website should never be cite: to me the more important thing (similar to the Wikipedia issue) is making sure the editor understands and documents for the reader what exactly a source can and cannot be considered reliable for. A doctor's website is probably pretty reliable for documenting that doctor's opinion, which may be of interest to the community even if it differs from consensus (or more often, if there is no consensus). The important thing is that the prose make clear when something is individual opinion and not consensus. So I'm wondering if these warnings could be converted into more "advice for handling sources" rather than telling people they can't use them at all. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 21:34, July 13, 2019 (EDT)
:I was hoping for some good feedback on this. Thank you.
:It might help to look this [https://www.me-pedia.org/index.php?title=Overtraining_syndrome&oldid=51563#cite_ref-1 old version] for what I'm trying to avoid - especially sources 1, 3, and 9 (the last is a doctor), look at the mentions of Lyme and symptoms list. 
:'''Wikipedia''' is best removed from the Article outlines in my view. A link to webmd, merckx msnuals or scienxedirect's search results would be much better. But linking to it wikipedia learn more is not the same as citing it. The [[MEpedia:Editorial_guidelines]] already point out Wikipedia is not reliable so I think we are being consistent. We could change the wording of the new section to suggest '''reading''' the References section on Wikipedia only for suggested sources, but I think ''linking'' to Wikipedia as a source is not OK. I've just been trying to sort out another page that actually linked to a numbered Wikipedia reference rather than the reference itself. Bear in mind also that some of what we cover are "contested" diagnoses, and Wikipedians are not representative of the general population - they are prominently young, male, single, childless (none of which are bad things but limited life experience), lacking in a biological or health background and in my experience highly skeptical and prone to promote minority opinions, regardless of new facts. 
:I'm finding '''doctors websites''' frequently used for key information that should be taken from elsewhere - or containing various misunderstandings - like symptoms of a poorly understood condition - which actually don't match the proposed diagnostic symptoms and probably cover half the population - and for unproven benefits of various supplements. So many doctors use "Chronic fatigue" and "Chronic fatigue syndrome" interchangeably, others claim to have found a cure (and they will sell you it). Dr Axe has "4 ways to overcome CFS" - with a few references that he massively overstates - treatments we certainly don't to claim are effective based on that. The single source he uses is a normal article suggesting that those treatments should be investigated further - not the same as Dr Axe claiming they are the "most promising treatments" for CFS. [https://drrondrucker.com/cfs This doctor] claims CFS is an autoimmune gut condition, and only 8 months of his non-prescription pills will treat it - that's not something we should cite on the Autoimmunity hypothesis page which is one of the harder places to get sources (OMF research is looking into autoimmunity at the moment). Any doctor's website with no sources on the article shouldn't be used (unless perhaps it's a well known expert in the field or they are cited on a page about the treatment they themselves have invented eg Dr Gupta on the Gupta programme page). Doctor's websites often promote whatever their niche treatments are - eg the "leaky gut" doctors will list 30 symptoms and that's their opinion - based on no actual studies at all, but gets cited as if it's fact. There's also a tiny number of atrocitious websites with a single author and single reviewer that just make things up (patient.co.uk actually invented totally false information a few years ago - didn't even get the classification or symptoms right - this has happened on several pages there.) There's also many references to "verywellhealth" that are actually just blogs by people with the illness but get cited as medical facts. So, that's what I'm trying to address. There's a real avoidance of peer reviewed journals too, in favor of unreferenced websites. I'm certainly open to suggestion. :'''YouTube''' videos might be something else that shouldn't be cited as a reference (unless it's explaining a clinical trial, treatment or clearly described as an opinion). Linking to it is fine, or embedding on the page to support referenced facts. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:22, July 14, 2019 (EDT)
:: I think it might be helpful to us to start a policy whereby any changes to the guidelines are discussed before they are implemented. These are really good ideas being raised, it would be nice to get them right. Just my 2 cents!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:31, July 15, 2019 (EDT)

===Re: Sources to avoid -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 11:42, July 15, 2019 (EDT)===

: Hmm.

: Rather than saying we can never use a doctor's website, I think it's more appropriate to say that PRIMARY sources are always, always preferable to SECONDARY sources. If a doctor cites a statistic and doesn't say where it's from, and you can't find the PRIMARY source, you shouldn't cite it. In fact, I'm surprised that this adjuration doesn't already exist somewhere. It's kind of vital to citation prioritization! The same goes for Wikipedia: it's a good place to hunt down PRIMARY sources. One wouldn't cite Wikipedia itself, and that should have been clear in the guidelines' original incarnation.

: We can also clarify the citation of facts versus opinions or theories. For example, let's say someone wants to reference Myhill's theories. She hasn't published often, but she's influenced a great number of patients' ideas about the disease, and treated a great number of patients; and anyway, we'd be citing her work as theory, not fact.

"Many researchers have found mitochondrial dysfunction" <-- cites Myhill's site [NOPE]

"Some clinicians, such as Dr Myhill, have treated people with ME with supplements geared to augment mitochondrial dysfunction" <-- cites Myhill's site [YES]

: I do agree we should talk about any changes on policy pages before implementing them.
:::I should have discussed here first. My apologizes. Dr Myhill may be very popular but she has had complaints to the GMC and been forced to change her website to a degree as a result, not so much about ME but her anti-vaccine statements. What about changing the doctor one to: 
"Information from a doctor's website must be verified for accuracy (read the original sources used), or presented as a minority opinion only, and not used for the introduction or symptom lists"
:::Re: Types of sources. Primary / secondary / tiertary are confusing teens to many. Wikipedia relies on tertiary eg systematic reviews like Cochrane or encyclopedia. We have very few and they are typically biased in ME or CFS Research. We actually prefer primary (eg peer reviewed articles) and secondary (Consensus statements, guidelines, etc). I find many charity websites to be very accurate, if articles are referenced. I think it would be better to talk about '''verifiable sources''' and '''academic sources'''. Perhaps with unreferenced articles from doctors/physios/etc considered one of the lowest quality of sources, only to cited as Dr X claims / believes / views that ...
:::I think it would be a positive to have an outright ban on using perhaps up to 5 extremely low quality websites that rank highly, including Wikipedia, but allow them under "learn more" or "articles and blogs" links since many explain patient experiences or different minority but valuable views. A few websites could be included due to being inaccessible in outside the country of origin - [[User:Pyrrhus]] has raised this before.
:::Feedback would also be welcome on proposed changes to the [[Template_talk:Cleanup|Cleanup template]] including links to scientific guidelines and being able to pick a default message to add to. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 12:10, July 15, 2019 (EDT)

== Sources to be careful with ==
* Unreferenced articles: If the article you are referencing does not list its own references at the end of the article, it’s probably not a reliable scientific reference.
* Blogs may be useful references when talking about the blog author or advocacy in general, but blogs should never be used as a reference for scientific evidence, as they are not peer-reviewed.
* A doctor's website may be a good source when talking about the doctor or the doctor’s ideas, but a doctor's website should not be used as a reference for scientific evidence. Doctor websites often reflect the doctor's opinion rather than an expert consensus.
* Wikipedia or other wikis may be good to list under the “Learn more” section of an article, but they should not be used as a reliable reference. You may, however, find a reliable reference in the “References” section of a Wikipedia article.
* Generally speaking, be aware that sources that are not published in a peer reviewed journal or an edited book may reflect only the authors' opinion.
* And remember that it’s always best to hunt down the original source of an idea you are citing. If your source merely cites a different source for that idea, it is best to use the original (“primary”) source instead of a copycat (“secondary”) source. However, secondary sources are fine if they are published review articles or consensus statements.
Feel free to edit what's above. I left "Sources best avoided" with just "Unreferenced articles" below it in the science guidelines [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 10:09, July 17, 2019 (EDT)
:I have made my changes. I changed “Sources to avoid” to “Sources to be careful with” to allow for nuance. It may be a good idea to substitute “Wikipedia” in the “Learn more” sections of the article outlines with “Outside articles: e.g. Wikipedia, WebMD, Merck Manual, or ScienceDirect”. I haven’t really come across any attempts to use a YouTube video as a scientific reference, so I’m not sure it needs a mention. The only reference we had to remove because it was only accessible in the UK was the British Prescription Drug Formulary.
:That’s what I’ve got. Any changes you would like to make [[User:JaimeS]] [[User:Canele]]?
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:40, July 20, 2019 (EDT)
:[[User:JaimeS|JaimeS]] I like the more detailed work above.

===Re: Sources to be careful with -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 16:14, September 16, 2019 (EDT)===

: Replace this text with your reply

==Scientific consensus ==
I suggest adding this heading and stating typical places where this can be found, eg IACFS Primer, CCC, ICC, IOM report. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:51, August 8, 2019 (EDT)
==Contested evidence ==
*How do we report on research on a researcher's page when there is substantial evidence or the conclusions from a piece of research are contested? Eg X does a clinical trial saying the Lightning Process is effective, but the Lightning Process page (and scientific consensus) says the opposite. This goes to neutral POV (point of view).
*1. If most of the researcher's evidence is contested do we use maybe a single major source to refute each, or put it all in a Criticisms section instead? Or do both? I'm uncomfortable writing things like "and X reported that medically unexplained symptoms (MUS) including CFS..." when CFS isn't categorized as MUS - that's a minority opinion. Is it better to put ''X regards CFS as medically unexplained symptoms (MUS), and X's study on antidepressants for MUS found...'' - Would mentioning limitations reported by the study (if it does), or by others be helpful? Eg use of broad Oxford criteria, drop out rates, being very specific about severity or how many improved.
2. Bias: Wikipedia has a list of [https://en.wikipedia.org/wiki/Wikipedia:Manual_of_Style/Words_to_watch words to watch] that suggest biased writing, these might be best in the editorial guidelines, but I think it useful to link to them here. Eg claim - "X claimed that..." is considered likely bias.
*3. Experts- Wikipedia gives the same weight to all regardless of qualifications / Special interests (I personally hate this - experts should not always have authority but they are experts!) - what's our view?
*4. Neutral point of view - [[Esther Crawley]]'s page is one of our top 10, it's not neutral in my view. What guidelines can help with this?
*5. A few pages have a list of articles on a particular point of view (list of articles explaining CBT not approx got CFS) - do we insist that an opposite list must also exist, and what about scientific consensus, if it supports the view that the list has do we still need the opposite?
*6. I find it very hard to work out if some topics are scientific or editorial guidelines. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:51, August 8, 2019 (EDT)
==Minor suggestions from last update ==
*[[Objective outcome]]s more reliable than [[subjective outcome]]s (e.g. step counters vs questionnaires)
*RCTs: objective outcomes vs subjective to mention? How to compare double blind with subjective outcomes better than unblinded with objective outcomes?
*Systematic reviews are often given more weight elsewhere than RCTs, do we have a policy on this given they major issues with certain systematic reviews eg the York Review used by the NHS, and Cochrane's
*Consider linking to [[:Category:Research terminology]] (although this does need work)

* Is it worth pointing out that close attention should be paid to the diagnostic criteria used, eg CCC selects more severely ill patients and less patients than Fukuda CFS criteria or SEID criteria, Fukuda more than Oxford

* Trials with [[pre-specified outcome]]s given more weight except when [[outcome switching]] occurs?
*Possibly link to [[Research bias in ME/CFS]] or the research terminology category. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:52, September 16, 2019 (EDT)
:With the exception of selection criteria (encompassing more than just diagnostic criteria), which should be mentioned: you can't capture everything with rules. Experienced editors will weigh the evidence on a case-by-case basis. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:02, September 16, 2019 (EDT)

ME Vereniging Nederland

2019-09-16T19:52:48Z

Guido den Broeder:/* Online presence */ + YouTube

Netherlands

2019-09-16T18:29:12Z

Guido den Broeder:/* Research */ no gov funding

[[File:Netherlands_flag.svg.png|320px|right|thumb|'''Netherlands''']]

The '''Netherlands''' is a country in Europe.

==Medical guidelines==
===ME===
There exists no medical guidance for ME in The Netherlands. In 2015, the Dutch Parliament assigned the Dutch Health Council to advise on ME. However, the council decided to advise on ME/CFS instead, recommending that the criteria for [[Systemic Exertion Intolerance Disease]] (SEID) be adopted.<ref name="Twisk, 20180516" /><ref>{{Cite web |last=Gezondheidsraad|title =ME/CVS|date=Den Haag, 2018|url=https://www.gezondheidsraad.nl/documenten/adviezen/2018/03/19/me-cvs|access-date=September 16, 2018}}</ref> The switch was met with heavy criticism.<ref name="Twisk, 20180516">{{Cite journal
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = Dutch Health Council advisory report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the wrong turn
| journal = [[Diagnostics]] | volume = 8 | issue = 2 | page =
| date = 2018
| pmid =
| doi = 10.3390/diagnostics8020034
}}
</ref> According to the ME Vereniging Nederland, in the absence of guidance specific to ME, the guideline for acquired brain injury should be followed.<ref>Coronel Instituut (2012), "Niet-Aangeboren Hersenletsel en Arbeidsparticipatie"</ref>

===CFS===
The Dutch Health Council produced advice on CFS in 2005.<ref>https://www.gezondheidsraad.nl/en/task-and-procedure/areas-of-activity/optimum-healthcare/chronic-fatigue-syndrome</ref> In February 2013, a basic medical guideline on CFS was published by CBO (in Dutch).<ref>http://www.diliguide.nl/document/3435/file/pdf/</ref>

==National health department==
Ministerie van Volksgezondheid, Welzijn en Sport

Adres:
Bezoekadres
Ministerie van Volksgezondheid, Welzijn en Sport
Parnassusplein 5
2511 VX Den Haag

Postadres:
Postbus 20350
2500 EJ Den Haag

Telefoonnummer: (070) 340 79 11
Faxnummer: (070) 340 78 34

[https://www.rijksoverheid.nl/ministeries/ministerie-van-volksgezondheid-welzijn-en-sport/inhoud/contact Contact]

==Government health insurance==

==Private health insurance==

==Access to care==

==Social security and disability benefits==

==Patient groups==
===ME===
* [[Groep ME-Den Haag]]
* [[ME Vereniging Nederland]]
* [[Stichting ME-de-patiënten]]

===ME/CFS===
* [[ME/CVS-Stichting Nederland]]
* [[ME/cvs Vereniging]]
* [[Steungroep ME en Arbeidsongeschiktheid]]

==Research==
There is no government funding for research into ME in the Netherlands.

==Research groups==
* [http://www.meresearch.nl/ Stichting ME Research]

==Researchers==
*[[Frans Visser]]
*[[Jos van der Meer]]
*[[Mark Vink]]
*[[Michael Maes]]
*[[Ruud Vermeulen]]

==Clinicians==
*[[Frans Visser]]
*[[Inna de Jong]]
*[[Paul van Meerendonk]]
*[[Johannes Peperkamp]]
*[[René Tisscher]]

==Notable patients==
*[[Guido den Broeder]]
*[[Frank Twisk]]
*[[Anil van der Zee]]

==See also==
*[[EUROMENE]]

== Learn more ==
*2018, [https://www.gezondheidsraad.nl/sites/default/files/grpublication/kernadvies_me_cvs_1.pdf ME/CVS. Den Haag.] - Gezondheidsraad

==References==
{{reflist}}

[[Category:Countries]]
[[Category:Europe]]
[[Category:Netherlands]]

User talk:JaimeS

2019-09-16T17:13:10Z

Guido den Broeder:/* Reply */ to notjusttired

==Leave me a message ==

==Guido den Broeder ==
[[User:JaimeS]] I would like to formally request a block on Guido den Broeder for all pages unless he is totally willing change his current pattern of behavior in general, and toward other editors, and resolve the '''four issues''' below. Also tagging [[User:Kmdenmark]] and [[User:JenB]] as active admins.

1. I thought perhaps there was a way forward with Guido but his recent post on my page indicates his total rejection of existing [[MEpedia:Manual of style]], [[MEpedia:editorial guidelines]], and [[MEpedia:Science guidelines]] and his intention to rewrite them then invite "friends" to join his takeover on MEpedia. Editors are expected to agree to follow these guidelines and he has at the moment said he won't. He has further removed an undiscussed suggestion of mine from [[MEpedia_talk:Manual of style]], which is not allowed.

It is now impossible for me to assume good faith given he has described bad faith intentions. After have told him to quit harassing me and leave my talk page only, only for him to call him a stalker on [[User_talk:Kmdenmark#Notjusttired]] minutes later and request that I be banned site wide. From my talk page:

:'''Manual of style '''
'''The Manual of style was in part created by editors that are no longer around, with random edits by you in between. I intend to change it to make it easier for ME patients to contribute, before inviting other ME patients to join this project. For now, just remember that the MoS is not mandatory, especially not on pages that are still work in progress. They are guidance, not policy. Allowing users to contribute in a style that they feel comfortable with has priority. Guido den Broeder (talk) 17:36, September 15, 2019 (EDT)''' - my reply here -[[User_talk:Notjusttired#Manual_of_style]]'''
 
Guido has deleted [https://www.me-pedia.org/index.php?title=MEpedia_talk:Manual_of_style&diff=prev&oldid=70031&diffmode=source my request for a link policy] entirely from the MOS talk page without discussion.
2. Assuming he does decide to agree to follow current policies and to negotiate changes rather than overwrite existing guidelines and deleting others' suggestions for changes, then I would like his number of rude comments,[https://www.me-pedia.org/wiki/User_talk:Malcx#September 1], baseless accusations[https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Malcx 1] [https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Notjusttired 2] - including calling me a "stalker" only after I told him to stop harassing me and to not post on my talk page - and uncivil comments directed at various with including myself, but especially [[User:Malcx]] to be addressed.

3. The reverting of unread changes[https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69919&diffmode=source 1] and resulting edit warring[https://www.me-pedia.org/index.php?limit=200&title=Special%3AContributions&contribs=user&target=Guido+den+Broeder&namespace=0&tagfilter=&start=&end= 2] - repeated re-reversing of inappropriate edits (rrv) and the use of "copyedit" comments to mask reversing neutrality edits - with [[User:Malcx]] [[User:Pyrrhus]] and myself on "rival" ME patient charity ME/cvs_Vereniging [https://www.me-pedia.org/index.php?title=ME/cvs_Vereniging&action=history here] would also need addressing, although some of this might not occur again if he is unable to edit those pages. I have previously [https://www.me-pedia.org/wiki/User_talk:Notjusttired#Slowdown raised conflict of interest with him]
 
4. Assuming that is done I request a permanent ban on editing
*his user page, ("internationally famous", links to his chess scores, novel, imdb page, changes his page's category, etc) - changes/reverts continuing for at least 2 years now - [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68421&oldid=68405&diffmode=source 1] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68335&oldid=68323&diffmode=source 2] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=21348&oldid=20986&diffmode=source 3] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=29666&oldid=27157&diffmode=source 4]
*all Dutch charity websites - including the one he runs [[ME Vereniging Nederland]], and [[ME/cvs Vereniging]] which he adds potentially false info to - especially given the constant reverting without reason, unsourced statements, conflict of interest edits, using self-promotion (dozens of links to wikisage, paraduin.nl - both his) and adding unreferenced edits to other Dutch charity pages, claiming [
his charity [[ME Vereniging Nederland]] is the only ME charity, and reversing edits for neutrality,[https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 1] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70021&oldid=70017&diffmode=source 2], [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=69955&oldid=69950&diffmode=source 3] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 4] with "copyedit" or "rvv" comments, MOS, reference improvements [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70016&oldid=70014&diffmode=source 5], citation needed and grammar. I have raised with him the conflict of interest in editing other Dutch patient charities than his own, including adding unsourced statements. He has responded by edit warring with myself and two others - even reversing "citation needed" and grammar edits. Of particular concern is the claim on his charity page that is it "the" ME charity of the Netherlands, when there are three. I have suggested ways forward -[https://www.me-pedia.org/wiki/Talk:ME_Vereniging_Nederland 1] [https://www.me-pedia.org/wiki/Talk:ME/cvs_Vereniging 2], ways to rephrase, but to no avail - instead he has threatened me requesting with a "topic ban" unless I voluntarily cease editing Dutch charities, and a site ban.

So the issues being
#ignoring all guidelines and reverting edits that follow them
#uncivil behavior, and baseless accusations aimed at other editors
#unsourced, biased, self-promotional edits on multiple pages, reversing any edits that revert them, and reversing unread edits
#assuming those can be resolved then ban from his own page, and all Dutch charities to prevent access given this behavior has happened whenever he has returned to edit MEpedia

I am sorry that there are not any other solutions I can suggest other than to see if he is willing to change - with restrictions in place - or otherwise a permanent block. He has been asked so many times to follow our collaborative way of working, had a lot of explanation, and been asked for an explanation of the reverts but without any way forward.
Thank your for the time taken to read and please let me know if you need more info. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:11, September 15, 2019 (EDT)

{{collapse bottom}}

: Thanks for the summary [[User:notjusttired]] and as I've mentioned elsewhere I support the block. As additional support I'd like to just say I think the overall level of rudeness to [[User:notjusttired]] has been the worst, showing a level of arrogance and unwillingness to cooperate that is simply not good for the community and quality of content on the site.

: Guido also seems to think/act as if he authoritative and speaks for the whole community, for example telling me "Go away, we don't want you here." [https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69926&diffmode=source 1] ( I concede my following edit of {citation needed} to that was perhaps not the most grown up response :) .)
: [[User:Malcx|Malcx]] ([[User talk:Malcx|talk]]) 21:09, September 15, 2019 (EDT)

===Reply===
* As chair of GAME, I know many of the world's leading advocates and researchers. Some of them would be willing to contribute here if they could do that unhindered by not knowledgable editors with a Wikipedia warrior attitude, who think style trumps content. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:54, September 16, 2019 (EDT)
* [[User:notjusttired]], if you want to be taken seriously as an editor at all, don't support and copy the vandals. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 13:13, September 16, 2019 (EDT)

== Slack Group? ==

Hi Jaime, sorry to bother you. I was just wondering if you knew whom I could ask about joining the Slack Group?
 Many thanks!
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 22:13, 19 March 2019 (EDT)

[[User:Pyrrhus|Pyrrhus]], drop me an email at jaime@meaction.net! We need an email address to be able to invite you.

:Thanks so much!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:30, 22 March 2019 (EDT)

== Request for adminship ==

Hi Jaime,

Could you upgrade my user rights group to administrator so I can deal with vandalism an harassment as displayed by [[user:Malcx]] who is not contributing anything to this project? We seem to have too few active admins, there hasn't been one online for days now. I have some 12 years of experience as administrator, bureaucrat and supervisor on various wiki's. Cheers, [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:33, September 16, 2019 (EDT)

Netherlands

2019-09-16T17:02:13Z

Guido den Broeder:/* Medical guidelines */ repair GR-ME/CVS link

[[File:Netherlands_flag.svg.png|320px|right|thumb|'''Netherlands''']]

The '''Netherlands''' is a country in Europe.

==Medical guidelines==
===ME===
There exists no medical guidance for ME in The Netherlands. In 2015, the Dutch Parliament assigned the Dutch Health Council to advise on ME. However, the council decided to advise on ME/CFS instead, recommending that the criteria for [[Systemic Exertion Intolerance Disease]] (SEID) be adopted.<ref name="Twisk, 20180516" /><ref>{{Cite web |last=Gezondheidsraad|title =ME/CVS|date=Den Haag, 2018|url=https://www.gezondheidsraad.nl/documenten/adviezen/2018/03/19/me-cvs|access-date=September 16, 2018}}</ref> The switch was met with heavy criticism.<ref name="Twisk, 20180516">{{Cite journal
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = Dutch Health Council advisory report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the wrong turn
| journal = [[Diagnostics]] | volume = 8 | issue = 2 | page =
| date = 2018
| pmid =
| doi = 10.3390/diagnostics8020034
}}
</ref> According to the ME Vereniging Nederland, in the absence of guidance specific to ME, the guideline for acquired brain injury should be followed.<ref>Coronel Instituut (2012), "Niet-Aangeboren Hersenletsel en Arbeidsparticipatie"</ref>

===CFS===
The Dutch Health Council produced advice on CFS in 2005.<ref>https://www.gezondheidsraad.nl/en/task-and-procedure/areas-of-activity/optimum-healthcare/chronic-fatigue-syndrome</ref> In February 2013, a basic medical guideline on CFS was published by CBO (in Dutch).<ref>http://www.diliguide.nl/document/3435/file/pdf/</ref>

==National health department==
Ministerie van Volksgezondheid, Welzijn en Sport

Adres:
Bezoekadres
Ministerie van Volksgezondheid, Welzijn en Sport
Parnassusplein 5
2511 VX Den Haag

Postadres:
Postbus 20350
2500 EJ Den Haag

Telefoonnummer: (070) 340 79 11
Faxnummer: (070) 340 78 34

[https://www.rijksoverheid.nl/ministeries/ministerie-van-volksgezondheid-welzijn-en-sport/inhoud/contact Contact]

==Government health insurance==

==Private health insurance==

==Access to care==

==Social security and disability benefits==

==Patient groups==
===ME===
* [[Groep ME-Den Haag]]
* [[ME Vereniging Nederland]]
* [[Stichting ME-de-patiënten]]

===ME/CFS===
* [[ME/CVS-Stichting Nederland]]
* [[ME/cvs Vereniging]]
* [[Steungroep ME en Arbeidsongeschiktheid]]

==Research==

==Research groups==
* [http://www.meresearch.nl/ Stichting ME Research]

==Researchers==
*[[Frans Visser]]
*[[Jos van der Meer]]
*[[Mark Vink]]
*[[Michael Maes]]
*[[Ruud Vermeulen]]

==Clinicians==
*[[Frans Visser]]
*[[Inna de Jong]]
*[[Paul van Meerendonk]]
*[[Johannes Peperkamp]]
*[[René Tisscher]]

==Notable patients==
*[[Guido den Broeder]]
*[[Frank Twisk]]
*[[Anil van der Zee]]

==See also==
*[[EUROMENE]]

== Learn more ==
*2018, [https://www.gezondheidsraad.nl/sites/default/files/grpublication/kernadvies_me_cvs_1.pdf ME/CVS. Den Haag.] - Gezondheidsraad

==References==
{{reflist}}

[[Category:Countries]]
[[Category:Europe]]
[[Category:Netherlands]]

User talk:JaimeS

2019-09-16T16:54:59Z

Guido den Broeder:/* Guido den Broeder */ reply

==Leave me a message ==

==Guido den Broeder ==
[[User:JaimeS]] I would like to formally request a block on Guido den Broeder for all pages unless he is totally willing change his current pattern of behavior in general, and toward other editors, and resolve the '''four issues''' below. Also tagging [[User:Kmdenmark]] and [[User:JenB]] as active admins.

1. I thought perhaps there was a way forward with Guido but his recent post on my page indicates his total rejection of existing [[MEpedia:Manual of style]], [[MEpedia:editorial guidelines]], and [[MEpedia:Science guidelines]] and his intention to rewrite them then invite "friends" to join his takeover on MEpedia. Editors are expected to agree to follow these guidelines and he has at the moment said he won't. He has further removed an undiscussed suggestion of mine from [[MEpedia_talk:Manual of style]], which is not allowed.

It is now impossible for me to assume good faith given he has described bad faith intentions. After have told him to quit harassing me and leave my talk page only, only for him to call him a stalker on [[User_talk:Kmdenmark#Notjusttired]] minutes later and request that I be banned site wide. From my talk page:

:'''Manual of style '''
'''The Manual of style was in part created by editors that are no longer around, with random edits by you in between. I intend to change it to make it easier for ME patients to contribute, before inviting other ME patients to join this project. For now, just remember that the MoS is not mandatory, especially not on pages that are still work in progress. They are guidance, not policy. Allowing users to contribute in a style that they feel comfortable with has priority. Guido den Broeder (talk) 17:36, September 15, 2019 (EDT)''' - my reply here -[[User_talk:Notjusttired#Manual_of_style]]'''
 
Guido has deleted [https://www.me-pedia.org/index.php?title=MEpedia_talk:Manual_of_style&diff=prev&oldid=70031&diffmode=source my request for a link policy] entirely from the MOS talk page without discussion.
2. Assuming he does decide to agree to follow current policies and to negotiate changes rather than overwrite existing guidelines and deleting others' suggestions for changes, then I would like his number of rude comments,[https://www.me-pedia.org/wiki/User_talk:Malcx#September 1], baseless accusations[https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Malcx 1] [https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Notjusttired 2] - including calling me a "stalker" only after I told him to stop harassing me and to not post on my talk page - and uncivil comments directed at various with including myself, but especially [[User:Malcx]] to be addressed.

3. The reverting of unread changes[https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69919&diffmode=source 1] and resulting edit warring[https://www.me-pedia.org/index.php?limit=200&title=Special%3AContributions&contribs=user&target=Guido+den+Broeder&namespace=0&tagfilter=&start=&end= 2] - repeated re-reversing of inappropriate edits (rrv) and the use of "copyedit" comments to mask reversing neutrality edits - with [[User:Malcx]] [[User:Pyrrhus]] and myself on "rival" ME patient charity ME/cvs_Vereniging [https://www.me-pedia.org/index.php?title=ME/cvs_Vereniging&action=history here] would also need addressing, although some of this might not occur again if he is unable to edit those pages. I have previously [https://www.me-pedia.org/wiki/User_talk:Notjusttired#Slowdown raised conflict of interest with him]
 
4. Assuming that is done I request a permanent ban on editing
*his user page, ("internationally famous", links to his chess scores, novel, imdb page, changes his page's category, etc) - changes/reverts continuing for at least 2 years now - [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68421&oldid=68405&diffmode=source 1] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68335&oldid=68323&diffmode=source 2] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=21348&oldid=20986&diffmode=source 3] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=29666&oldid=27157&diffmode=source 4]
*all Dutch charity websites - including the one he runs [[ME Vereniging Nederland]], and [[ME/cvs Vereniging]] which he adds potentially false info to - especially given the constant reverting without reason, unsourced statements, conflict of interest edits, using self-promotion (dozens of links to wikisage, paraduin.nl - both his) and adding unreferenced edits to other Dutch charity pages, claiming [
his charity [[ME Vereniging Nederland]] is the only ME charity, and reversing edits for neutrality,[https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 1] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70021&oldid=70017&diffmode=source 2], [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=69955&oldid=69950&diffmode=source 3] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 4] with "copyedit" or "rvv" comments, MOS, reference improvements [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70016&oldid=70014&diffmode=source 5], citation needed and grammar. I have raised with him the conflict of interest in editing other Dutch patient charities than his own, including adding unsourced statements. He has responded by edit warring with myself and two others - even reversing "citation needed" and grammar edits. Of particular concern is the claim on his charity page that is it "the" ME charity of the Netherlands, when there are three. I have suggested ways forward -[https://www.me-pedia.org/wiki/Talk:ME_Vereniging_Nederland 1] [https://www.me-pedia.org/wiki/Talk:ME/cvs_Vereniging 2], ways to rephrase, but to no avail - instead he has threatened me requesting with a "topic ban" unless I voluntarily cease editing Dutch charities, and a site ban.

So the issues being
#ignoring all guidelines and reverting edits that follow them
#uncivil behavior, and baseless accusations aimed at other editors
#unsourced, biased, self-promotional edits on multiple pages, reversing any edits that revert them, and reversing unread edits
#assuming those can be resolved then ban from his own page, and all Dutch charities to prevent access given this behavior has happened whenever he has returned to edit MEpedia

I am sorry that there are not any other solutions I can suggest other than to see if he is willing to change - with restrictions in place - or otherwise a permanent block. He has been asked so many times to follow our collaborative way of working, had a lot of explanation, and been asked for an explanation of the reverts but without any way forward.
Thank your for the time taken to read and please let me know if you need more info. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:11, September 15, 2019 (EDT)

{{collapse bottom}}

: Thanks for the summary [[User:notjusttired]] and as I've mentioned elsewhere I support the block. As additional support I'd like to just say I think the overall level of rudeness to [[User:notjusttired]] has been the worst, showing a level of arrogance and unwillingness to cooperate that is simply not good for the community and quality of content on the site.

: Guido also seems to think/act as if he authoritative and speaks for the whole community, for example telling me "Go away, we don't want you here." [https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69926&diffmode=source 1] ( I concede my following edit of {citation needed} to that was perhaps not the most grown up response :) .)
: [[User:Malcx|Malcx]] ([[User talk:Malcx|talk]]) 21:09, September 15, 2019 (EDT)

===Reply===
As chair of GAME, I know many of the world's leading advocates and researchers. Some of them would be willing to contribute here if they could do that unhindered by not knowledgable editors with a Wikipedia warrior attitude, who think style trumps content. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:54, September 16, 2019 (EDT)

== Slack Group? ==

Hi Jaime, sorry to bother you. I was just wondering if you knew whom I could ask about joining the Slack Group?
 Many thanks!
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 22:13, 19 March 2019 (EDT)

[[User:Pyrrhus|Pyrrhus]], drop me an email at jaime@meaction.net! We need an email address to be able to invite you.

:Thanks so much!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:30, 22 March 2019 (EDT)

== Request for adminship ==

Hi Jaime,

Could you upgrade my user rights group to administrator so I can deal with vandalism an harassment as displayed by [[user:Malcx]] who is not contributing anything to this project? We seem to have too few active admins, there hasn't been one online for days now. I have some 12 years of experience as administrator, bureaucrat and supervisor on various wiki's. Cheers, [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:33, September 16, 2019 (EDT)

User talk:JaimeS

2019-09-16T16:44:29Z

Guido den Broeder:/* Request for adminship */ +

==Leave me a message ==

==Guido den Broeder ==
[[User:JaimeS]] I would like to formally request a block on Guido den Broeder for all pages unless he is totally willing change his current pattern of behavior in general, and toward other editors, and resolve the '''four issues''' below. Also tagging [[User:Kmdenmark]] and [[User:JenB]] as active admins.

1. I thought perhaps there was a way forward with Guido but his recent post on my page indicates his total rejection of existing [[MEpedia:Manual of style]], [[MEpedia:editorial guidelines]], and [[MEpedia:Science guidelines]] and his intention to rewrite them then invite "friends" to join his takeover on MEpedia. Editors are expected to agree to follow these guidelines and he has at the moment said he won't. He has further removed an undiscussed suggestion of mine from [[MEpedia_talk:Manual of style]], which is not allowed.

It is now impossible for me to assume good faith given he has described bad faith intentions. After have told him to quit harassing me and leave my talk page only, only for him to call him a stalker on [[User_talk:Kmdenmark#Notjusttired]] minutes later and request that I be banned site wide. From my talk page:

:'''Manual of style '''
'''The Manual of style was in part created by editors that are no longer around, with random edits by you in between. I intend to change it to make it easier for ME patients to contribute, before inviting other ME patients to join this project. For now, just remember that the MoS is not mandatory, especially not on pages that are still work in progress. They are guidance, not policy. Allowing users to contribute in a style that they feel comfortable with has priority. Guido den Broeder (talk) 17:36, September 15, 2019 (EDT)''' - my reply here -[[User_talk:Notjusttired#Manual_of_style]]'''
 
Guido has deleted [https://www.me-pedia.org/index.php?title=MEpedia_talk:Manual_of_style&diff=prev&oldid=70031&diffmode=source my request for a link policy] entirely from the MOS talk page without discussion.
2. Assuming he does decide to agree to follow current policies and to negotiate changes rather than overwrite existing guidelines and deleting others' suggestions for changes, then I would like his number of rude comments,[https://www.me-pedia.org/wiki/User_talk:Malcx#September 1], baseless accusations[https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Malcx 1] [https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Notjusttired 2] - including calling me a "stalker" only after I told him to stop harassing me and to not post on my talk page - and uncivil comments directed at various with including myself, but especially [[User:Malcx]] to be addressed.

3. The reverting of unread changes[https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69919&diffmode=source 1] and resulting edit warring[https://www.me-pedia.org/index.php?limit=200&title=Special%3AContributions&contribs=user&target=Guido+den+Broeder&namespace=0&tagfilter=&start=&end= 2] - repeated re-reversing of inappropriate edits (rrv) and the use of "copyedit" comments to mask reversing neutrality edits - with [[User:Malcx]] [[User:Pyrrhus]] and myself on "rival" ME patient charity ME/cvs_Vereniging [https://www.me-pedia.org/index.php?title=ME/cvs_Vereniging&action=history here] would also need addressing, although some of this might not occur again if he is unable to edit those pages. I have previously [https://www.me-pedia.org/wiki/User_talk:Notjusttired#Slowdown raised conflict of interest with him]
 
4. Assuming that is done I request a permanent ban on editing
*his user page, ("internationally famous", links to his chess scores, novel, imdb page, changes his page's category, etc) - changes/reverts continuing for at least 2 years now - [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68421&oldid=68405&diffmode=source 1] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68335&oldid=68323&diffmode=source 2] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=21348&oldid=20986&diffmode=source 3] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=29666&oldid=27157&diffmode=source 4]
*all Dutch charity websites - including the one he runs [[ME Vereniging Nederland]], and [[ME/cvs Vereniging]] which he adds potentially false info to - especially given the constant reverting without reason, unsourced statements, conflict of interest edits, using self-promotion (dozens of links to wikisage, paraduin.nl - both his) and adding unreferenced edits to other Dutch charity pages, claiming [
his charity [[ME Vereniging Nederland]] is the only ME charity, and reversing edits for neutrality,[https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 1] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70021&oldid=70017&diffmode=source 2], [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=69955&oldid=69950&diffmode=source 3] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 4] with "copyedit" or "rvv" comments, MOS, reference improvements [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70016&oldid=70014&diffmode=source 5], citation needed and grammar. I have raised with him the conflict of interest in editing other Dutch patient charities than his own, including adding unsourced statements. He has responded by edit warring with myself and two others - even reversing "citation needed" and grammar edits. Of particular concern is the claim on his charity page that is it "the" ME charity of the Netherlands, when there are three. I have suggested ways forward -[https://www.me-pedia.org/wiki/Talk:ME_Vereniging_Nederland 1] [https://www.me-pedia.org/wiki/Talk:ME/cvs_Vereniging 2], ways to rephrase, but to no avail - instead he has threatened me requesting with a "topic ban" unless I voluntarily cease editing Dutch charities, and a site ban.

So the issues being
#ignoring all guidelines and reverting edits that follow them
#uncivil behavior, and baseless accusations aimed at other editors
#unsourced, biased, self-promotional edits on multiple pages, reversing any edits that revert them, and reversing unread edits
#assuming those can be resolved then ban from his own page, and all Dutch charities to prevent access given this behavior has happened whenever he has returned to edit MEpedia

I am sorry that there are not any other solutions I can suggest other than to see if he is willing to change - with restrictions in place - or otherwise a permanent block. He has been asked so many times to follow our collaborative way of working, had a lot of explanation, and been asked for an explanation of the reverts but without any way forward.
Thank your for the time taken to read and please let me know if you need more info. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:11, September 15, 2019 (EDT)

{{collapse bottom}}

: Thanks for the summary [[User:notjusttired]] and as I've mentioned elsewhere I support the block. As additional support I'd like to just say I think the overall level of rudeness to [[User:notjusttired]] has been the worst, showing a level of arrogance and unwillingness to cooperate that is simply not good for the community and quality of content on the site.

: Guido also seems to think/act as if he authoritative and speaks for the whole community, for example telling me "Go away, we don't want you here." [https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69926&diffmode=source 1] ( I concede my following edit of {citation needed} to that was perhaps not the most grown up response :) .)
: [[User:Malcx|Malcx]] ([[User talk:Malcx|talk]]) 21:09, September 15, 2019 (EDT)

== Slack Group? ==

Hi Jaime, sorry to bother you. I was just wondering if you knew whom I could ask about joining the Slack Group?
 Many thanks!
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 22:13, 19 March 2019 (EDT)

[[User:Pyrrhus|Pyrrhus]], drop me an email at jaime@meaction.net! We need an email address to be able to invite you.

:Thanks so much!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:30, 22 March 2019 (EDT)

== Request for adminship ==

Hi Jaime,

Could you upgrade my user rights group to administrator so I can deal with vandalism an harassment as displayed by [[user:Malcx]] who is not contributing anything to this project? We seem to have too few active admins, there hasn't been one online for days now. I have some 12 years of experience as administrator, bureaucrat and supervisor on various wiki's. Cheers, [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:33, September 16, 2019 (EDT)

User talk:JaimeS

2019-09-16T16:34:21Z

Guido den Broeder:/* Request for adminship */ software error

==Leave me a message ==

==Guido den Broeder ==
[[User:JaimeS]] I would like to formally request a block on Guido den Broeder for all pages unless he is totally willing change his current pattern of behavior in general, and toward other editors, and resolve the '''four issues''' below. Also tagging [[User:Kmdenmark]] and [[User:JenB]] as active admins.

1. I thought perhaps there was a way forward with Guido but his recent post on my page indicates his total rejection of existing [[MEpedia:Manual of style]], [[MEpedia:editorial guidelines]], and [[MEpedia:Science guidelines]] and his intention to rewrite them then invite "friends" to join his takeover on MEpedia. Editors are expected to agree to follow these guidelines and he has at the moment said he won't. He has further removed an undiscussed suggestion of mine from [[MEpedia_talk:Manual of style]], which is not allowed.

It is now impossible for me to assume good faith given he has described bad faith intentions. After have told him to quit harassing me and leave my talk page only, only for him to call him a stalker on [[User_talk:Kmdenmark#Notjusttired]] minutes later and request that I be banned site wide. From my talk page:

:'''Manual of style '''
'''The Manual of style was in part created by editors that are no longer around, with random edits by you in between. I intend to change it to make it easier for ME patients to contribute, before inviting other ME patients to join this project. For now, just remember that the MoS is not mandatory, especially not on pages that are still work in progress. They are guidance, not policy. Allowing users to contribute in a style that they feel comfortable with has priority. Guido den Broeder (talk) 17:36, September 15, 2019 (EDT)''' - my reply here -[[User_talk:Notjusttired#Manual_of_style]]'''
 
Guido has deleted [https://www.me-pedia.org/index.php?title=MEpedia_talk:Manual_of_style&diff=prev&oldid=70031&diffmode=source my request for a link policy] entirely from the MOS talk page without discussion.
2. Assuming he does decide to agree to follow current policies and to negotiate changes rather than overwrite existing guidelines and deleting others' suggestions for changes, then I would like his number of rude comments,[https://www.me-pedia.org/wiki/User_talk:Malcx#September 1], baseless accusations[https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Malcx 1] [https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Notjusttired 2] - including calling me a "stalker" only after I told him to stop harassing me and to not post on my talk page - and uncivil comments directed at various with including myself, but especially [[User:Malcx]] to be addressed.

3. The reverting of unread changes[https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69919&diffmode=source 1] and resulting edit warring[https://www.me-pedia.org/index.php?limit=200&title=Special%3AContributions&contribs=user&target=Guido+den+Broeder&namespace=0&tagfilter=&start=&end= 2] - repeated re-reversing of inappropriate edits (rrv) and the use of "copyedit" comments to mask reversing neutrality edits - with [[User:Malcx]] [[User:Pyrrhus]] and myself on "rival" ME patient charity ME/cvs_Vereniging [https://www.me-pedia.org/index.php?title=ME/cvs_Vereniging&action=history here] would also need addressing, although some of this might not occur again if he is unable to edit those pages. I have previously [https://www.me-pedia.org/wiki/User_talk:Notjusttired#Slowdown raised conflict of interest with him]
 
4. Assuming that is done I request a permanent ban on editing
*his user page, ("internationally famous", links to his chess scores, novel, imdb page, changes his page's category, etc) - changes/reverts continuing for at least 2 years now - [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68421&oldid=68405&diffmode=source 1] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68335&oldid=68323&diffmode=source 2] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=21348&oldid=20986&diffmode=source 3] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=29666&oldid=27157&diffmode=source 4]
*all Dutch charity websites - including the one he runs [[ME Vereniging Nederland]], and [[ME/cvs Vereniging]] which he adds potentially false info to - especially given the constant reverting without reason, unsourced statements, conflict of interest edits, using self-promotion (dozens of links to wikisage, paraduin.nl - both his) and adding unreferenced edits to other Dutch charity pages, claiming [
his charity [[ME Vereniging Nederland]] is the only ME charity, and reversing edits for neutrality,[https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 1] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70021&oldid=70017&diffmode=source 2], [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=69955&oldid=69950&diffmode=source 3] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 4] with "copyedit" or "rvv" comments, MOS, reference improvements [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70016&oldid=70014&diffmode=source 5], citation needed and grammar. I have raised with him the conflict of interest in editing other Dutch patient charities than his own, including adding unsourced statements. He has responded by edit warring with myself and two others - even reversing "citation needed" and grammar edits. Of particular concern is the claim on his charity page that is it "the" ME charity of the Netherlands, when there are three. I have suggested ways forward -[https://www.me-pedia.org/wiki/Talk:ME_Vereniging_Nederland 1] [https://www.me-pedia.org/wiki/Talk:ME/cvs_Vereniging 2], ways to rephrase, but to no avail - instead he has threatened me requesting with a "topic ban" unless I voluntarily cease editing Dutch charities, and a site ban.

So the issues being
#ignoring all guidelines and reverting edits that follow them
#uncivil behavior, and baseless accusations aimed at other editors
#unsourced, biased, self-promotional edits on multiple pages, reversing any edits that revert them, and reversing unread edits
#assuming those can be resolved then ban from his own page, and all Dutch charities to prevent access given this behavior has happened whenever he has returned to edit MEpedia

I am sorry that there are not any other solutions I can suggest other than to see if he is willing to change - with restrictions in place - or otherwise a permanent block. He has been asked so many times to follow our collaborative way of working, had a lot of explanation, and been asked for an explanation of the reverts but without any way forward.
Thank your for the time taken to read and please let me know if you need more info. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:11, September 15, 2019 (EDT)

{{collapse bottom}}

: Thanks for the summary [[User:notjusttired]] and as I've mentioned elsewhere I support the block. As additional support I'd like to just say I think the overall level of rudeness to [[User:notjusttired]] has been the worst, showing a level of arrogance and unwillingness to cooperate that is simply not good for the community and quality of content on the site.

: Guido also seems to think/act as if he authoritative and speaks for the whole community, for example telling me "Go away, we don't want you here." [https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69926&diffmode=source 1] ( I concede my following edit of {citation needed} to that was perhaps not the most grown up response :) .)
: [[User:Malcx|Malcx]] ([[User talk:Malcx|talk]]) 21:09, September 15, 2019 (EDT)

== Slack Group? ==

Hi Jaime, sorry to bother you. I was just wondering if you knew whom I could ask about joining the Slack Group?
 Many thanks!
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 22:13, 19 March 2019 (EDT)

[[User:Pyrrhus|Pyrrhus]], drop me an email at jaime@meaction.net! We need an email address to be able to invite you.

:Thanks so much!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:30, 22 March 2019 (EDT)

== Request for adminship ==

Hi Jaime,

Could you upgrade my user rights group to administrator so I can deal with vandalism an harassment as displayed by [[user:Malcx]]? We seem to have too few active admins, there hasn't been one online for days now. I have some 12 years of experience as administrator, bureaucrat and supervisor on various wiki's. Cheers, [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:33, September 16, 2019 (EDT)

User talk:JaimeS

2019-09-16T16:33:32Z

Guido den Broeder:/* Request for adminship -- ~~~~ */ new section

==Leave me a message ==

==Guido den Broeder ==
[[User:JaimeS]] I would like to formally request a block on Guido den Broeder for all pages unless he is totally willing change his current pattern of behavior in general, and toward other editors, and resolve the '''four issues''' below. Also tagging [[User:Kmdenmark]] and [[User:JenB]] as active admins.

1. I thought perhaps there was a way forward with Guido but his recent post on my page indicates his total rejection of existing [[MEpedia:Manual of style]], [[MEpedia:editorial guidelines]], and [[MEpedia:Science guidelines]] and his intention to rewrite them then invite "friends" to join his takeover on MEpedia. Editors are expected to agree to follow these guidelines and he has at the moment said he won't. He has further removed an undiscussed suggestion of mine from [[MEpedia_talk:Manual of style]], which is not allowed.

It is now impossible for me to assume good faith given he has described bad faith intentions. After have told him to quit harassing me and leave my talk page only, only for him to call him a stalker on [[User_talk:Kmdenmark#Notjusttired]] minutes later and request that I be banned site wide. From my talk page:

:'''Manual of style '''
'''The Manual of style was in part created by editors that are no longer around, with random edits by you in between. I intend to change it to make it easier for ME patients to contribute, before inviting other ME patients to join this project. For now, just remember that the MoS is not mandatory, especially not on pages that are still work in progress. They are guidance, not policy. Allowing users to contribute in a style that they feel comfortable with has priority. Guido den Broeder (talk) 17:36, September 15, 2019 (EDT)''' - my reply here -[[User_talk:Notjusttired#Manual_of_style]]'''
 
Guido has deleted [https://www.me-pedia.org/index.php?title=MEpedia_talk:Manual_of_style&diff=prev&oldid=70031&diffmode=source my request for a link policy] entirely from the MOS talk page without discussion.
2. Assuming he does decide to agree to follow current policies and to negotiate changes rather than overwrite existing guidelines and deleting others' suggestions for changes, then I would like his number of rude comments,[https://www.me-pedia.org/wiki/User_talk:Malcx#September 1], baseless accusations[https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Malcx 1] [https://www.me-pedia.org/wiki/User_talk:Kmdenmark#Notjusttired 2] - including calling me a "stalker" only after I told him to stop harassing me and to not post on my talk page - and uncivil comments directed at various with including myself, but especially [[User:Malcx]] to be addressed.

3. The reverting of unread changes[https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69919&diffmode=source 1] and resulting edit warring[https://www.me-pedia.org/index.php?limit=200&title=Special%3AContributions&contribs=user&target=Guido+den+Broeder&namespace=0&tagfilter=&start=&end= 2] - repeated re-reversing of inappropriate edits (rrv) and the use of "copyedit" comments to mask reversing neutrality edits - with [[User:Malcx]] [[User:Pyrrhus]] and myself on "rival" ME patient charity ME/cvs_Vereniging [https://www.me-pedia.org/index.php?title=ME/cvs_Vereniging&action=history here] would also need addressing, although some of this might not occur again if he is unable to edit those pages. I have previously [https://www.me-pedia.org/wiki/User_talk:Notjusttired#Slowdown raised conflict of interest with him]
 
4. Assuming that is done I request a permanent ban on editing
*his user page, ("internationally famous", links to his chess scores, novel, imdb page, changes his page's category, etc) - changes/reverts continuing for at least 2 years now - [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68421&oldid=68405&diffmode=source 1] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=68335&oldid=68323&diffmode=source 2] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=21348&oldid=20986&diffmode=source 3] [https://www.me-pedia.org/index.php?title=Guido_den_Broeder&type=revision&diff=29666&oldid=27157&diffmode=source 4]
*all Dutch charity websites - including the one he runs [[ME Vereniging Nederland]], and [[ME/cvs Vereniging]] which he adds potentially false info to - especially given the constant reverting without reason, unsourced statements, conflict of interest edits, using self-promotion (dozens of links to wikisage, paraduin.nl - both his) and adding unreferenced edits to other Dutch charity pages, claiming [
his charity [[ME Vereniging Nederland]] is the only ME charity, and reversing edits for neutrality,[https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 1] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70021&oldid=70017&diffmode=source 2], [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=69955&oldid=69950&diffmode=source 3] [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=68270&oldid=19663&diffmode=source 4] with "copyedit" or "rvv" comments, MOS, reference improvements [https://www.me-pedia.org/index.php?title=ME_Vereniging_Nederland&type=revision&diff=70016&oldid=70014&diffmode=source 5], citation needed and grammar. I have raised with him the conflict of interest in editing other Dutch patient charities than his own, including adding unsourced statements. He has responded by edit warring with myself and two others - even reversing "citation needed" and grammar edits. Of particular concern is the claim on his charity page that is it "the" ME charity of the Netherlands, when there are three. I have suggested ways forward -[https://www.me-pedia.org/wiki/Talk:ME_Vereniging_Nederland 1] [https://www.me-pedia.org/wiki/Talk:ME/cvs_Vereniging 2], ways to rephrase, but to no avail - instead he has threatened me requesting with a "topic ban" unless I voluntarily cease editing Dutch charities, and a site ban.

So the issues being
#ignoring all guidelines and reverting edits that follow them
#uncivil behavior, and baseless accusations aimed at other editors
#unsourced, biased, self-promotional edits on multiple pages, reversing any edits that revert them, and reversing unread edits
#assuming those can be resolved then ban from his own page, and all Dutch charities to prevent access given this behavior has happened whenever he has returned to edit MEpedia

I am sorry that there are not any other solutions I can suggest other than to see if he is willing to change - with restrictions in place - or otherwise a permanent block. He has been asked so many times to follow our collaborative way of working, had a lot of explanation, and been asked for an explanation of the reverts but without any way forward.
Thank your for the time taken to read and please let me know if you need more info. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:11, September 15, 2019 (EDT)

{{collapse bottom}}

: Thanks for the summary [[User:notjusttired]] and as I've mentioned elsewhere I support the block. As additional support I'd like to just say I think the overall level of rudeness to [[User:notjusttired]] has been the worst, showing a level of arrogance and unwillingness to cooperate that is simply not good for the community and quality of content on the site.

: Guido also seems to think/act as if he authoritative and speaks for the whole community, for example telling me "Go away, we don't want you here." [https://www.me-pedia.org/index.php?title=Talk:ME/cvs_Vereniging&diff=prev&oldid=69926&diffmode=source 1] ( I concede my following edit of {citation needed} to that was perhaps not the most grown up response :) .)
: [[User:Malcx|Malcx]] ([[User talk:Malcx|talk]]) 21:09, September 15, 2019 (EDT)

== Slack Group? ==

Hi Jaime, sorry to bother you. I was just wondering if you knew whom I could ask about joining the Slack Group?
 Many thanks!
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 22:13, 19 March 2019 (EDT)

[[User:Pyrrhus|Pyrrhus]], drop me an email at jaime@meaction.net! We need an email address to be able to invite you.

:Thanks so much!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:30, 22 March 2019 (EDT)

== Request for adminship -- [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:33, September 16, 2019 (EDT) ==

Hi Jaime,

Could you upgrade my user rights group to administrator so I can deal with vandalism an harassment as displayed by [[user:Malcx]]? We seem to have too few active admins, there hasn't been one online for days now. I have some 12 years of experience as administrator, bureaucrat and supervisor on various wiki's. Cheers, [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:33, September 16, 2019 (EDT)

Guido den Broeder

2019-09-16T16:22:02Z

Guido den Broeder:rvv

[[File:20170811_Guido_den_Broeder.jpg|240px|thumb|right|Photo: Dutch Casting Agency (2017)]]
'''Guido den Broeder''' (Den Haag, 28 February 1957) is a Dutch writer, econometrician, politician and chess player. He is a [[myalgic encephalomyelitis]] patient (since 1987) and advocate. He lives in Rotterdam, the [[Netherlands]].

==Career==
Den Broeder gained international fame with the development of the macro-econometric model AMO-K, which for some 15 years was used to study a number of strategic policy scenarios for The Netherlands.<ref>1985 J.A.M. Heijke, J. de Koning, R.J.M. Maas, G. den Broeder, "A model of the Dutch Labour Market (AMO-K)", De Economist, 133-4</ref><ref>1988 G. den Broeder, "Alternatieve heffingsgrondslagen voor de sociale zekerheid. Micro-, meso- en macro-economische effecten", Nederlands Economisch Instituut / Magnana Mu Publishing & Research</ref> From 1990-1995, he was a member of the Economic Committee of the Dutch political party GroenLinks.<ref>1993 G. den Broeder, "GroenLinks 1995-1998, Financiële vertaling van het ontwerp-verkiezingsprogramma", Economische Commissie GroenLinks, 2 August</ref> He was a representative in Rotterdam from 1994 to 2002.

An accomplished chess player, he gained the title of FIDE Master and became champion of the Rotterdam region on two occasions. He finished second in the Dutch Correspondence Chess championship of 1980/81, and authored a number of tournament books.<ref>1994 J. de Hooge, M. de Zeeuw, H. van Bekkum (eds.), "De weg van Kralingen naar CAP VOLMAC Rotterdam. 1924-1994, 70 jaar van een topclub", Rotterdam: Cap Volmac BV, p195-197</ref><ref>2016 Nederlandse Bond van Correspondentieschakers, "Correspondentieschaken in Nederland. 50 Jaar NBC 1966-2016", Gent: Thinkers Publishing, ISBN 978-90-425100-4-4, p116-119</ref>

On 1 April 2015, as a protest move, he declared his Rotterdam home as part of a micronation, Paraduin. This was after The Netherlands denied him welfare and the Dutch court refused to hear his case leaving him without means to survive.<ref>2014 [http://www.mevereniging.nl/rotterdam-weigert-bijstand-aan-voorzitter-me-vereniging/ "Rotterdam weigert bijstand aan voorzitter ME Vereniging"], news item, ME Vereniging Nederland, 13 July</ref><ref>2015 [http://www.paraduin.nl/2015/07/01/weg-uit-nederland/ "Weg uit Nederland"], news item, Paraduin, 1 July</ref>

Den Broeder was an executive producer of the action thriller ''The Russian Bride'', released in 2019. It features a desparate father going to extreme lengths to find a cure for his son, who suffers from a [[mitochondria]]l disease.<ref>2018 [http://www.paraduin.nl/2018/12/18/the-russian-bride-comes-to-porto/ The Russian Bride comes to Porto], news item, Paraduin, 18 December</ref> He also wrote the sciencefiction/fantasy novel ''Bellerophon'', about a young man with brain damage who has to find his way in a strange world to fulfil a heroic destiny.<ref>2017 Ogidius, "Bellerophon", Paraduin Productions, October</ref>

==Advocacy==
On May 12, 1987, Den Broeder fell ill with myalgic encephalomyelitis, and never recovered. The diagnosis arrived at his house while he was playing a chess tournament in Hungary in 1990, where he succumbed to exhaustion halfway the event.<ref>2009 [http://www.chessgames.com/perl/chessplayer?pid=94920 "The chess games of Guido den Broeder"], comment, Chessgames.com, 19 April</ref> During the years that followed, he tried but failed to receive [[disability benefits]], despite having been fully insured.<ref>De Volkskrant (2003), [https://www.volkskrant.nl/nieuws-achtergrond/wao-geen-verzekering-tegen-ziekte~bb1386c8/ "WAO geen verzekering tegen ziekte"], 23 May</ref>

In a letter to GroenLinks chairman Ab Harrewijn, 1996, Den Broeder asked for political attention to the plight of ME patients in the Netherlands.<ref>1996 G. den Broeder, letter to Ab Harrewijn, 14 February</ref> A budget of € 2.72 million (6 million gulden) was eventually set aside by Dutch parliament for biomedical research into ME. However, after the Gezondheidsraad produced an advice on [[Chronic Fatigue Syndrome]] (CFS) in 2005, the money was squandered on studies into [[cognitive behavioural therapy]] (CBT) and [[graded exercise therapy]] (GET) for CFS patients.

In 2004 Den Broeder was one of the leaders of a patient revolt against the board of the government-subsidized [[ME/CVS-Stichting Nederland]], which denied ME and CFS patients influence on the foundation's positions and activities. To give patients a voice and counter the foundation's propaganda of CBT/GET, he co-founded the [[ME en CVS Vereniging]] in 2005, later renamed to ME/CVS Vereniging. As a chairmain (two periods) and [[guideline]] representative, he educated patients and doctors about the difference between ME and CFS. He furthermore criticised the publications of the Dutch Health Council and the decisions of the Dutch minister of health.

When in 2011 the [[International Consensus Criteria]] for ME were published and CFS got classified away from ME in the [[ICD10-CM]] (published in 2015), the decision was made to disband the ME/CVS Vereniging. Den Broeder founded the [[ME Vereniging Nederland]], the national patient organization for [[ME]] in the Netherlands. He has served as chairman until this day. Also in 2011, he founded and became president of the [[Stichting ME Research]], a foundation whose purpose is to conduct, promote and interpret research into myalgic encephalomyelitis. He initiated several ongoing projects, including ''Wetenschap voor Patiënten'' ([[Science for Patients]]). Den Broeder's YouTube channel [[DossierME]] shows presentations and interviews from that project.

Den Broeder is a [[basic income]] advocate,<ref>1991 G. den Broeder, A. de Roo, "Basisinkomen - omdat het kan", GroenLinks</ref> and served as a board member of the Vereniging Basisinkomen for 13 years. On several occasions he has suggested that ME patients would profit from the introduction of a basic income, leaving behind the 'unfavorable lottery' that the current system for disability benefits has to offer. Findings by the Stichting ME Research indicate that half of the ME patients in The Netherlands have no or insufficient income.

Together with [[Wendy Boutilier]] and [[John Gabor]], Den Broeder founded the international group [[Global Advocates for Myalgic Encephalomyelitis]] in 2016. GAME supports the application of the International Consensus Criteria for ME.

==Education==
* 1981 Drs in econometrics, Erasmus University Rotterdam

==Interviews & Talks==
*2003 "Van willekeur naar basisinkomen", Attac-lecture, Den Haag, 25 February
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_overhandiging.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], speech, ErkenME, 12 May
*2010 "Ervaringen met behandelingen bij ME/CVS", presentation, Landelijke ME informatiedag, Amersfoort, 8 September
*2011 "Knelpunten in de zorg voor ME-patiënten", presentation, Landelijke ME informatiedag, Driebergen, 12 May
*2013 [https://www.youtube.com/watch?v=T1nSIvR3Bfk Wetenschap voor Patiënten], interview, DossierME, 21 June
*2014 "Preconcept Multidisciplinaire Richtlijn ME", presentation, Landelijke ME informatiedag, Utrecht, 12 May
*2015 "Basisinkomen voor chronisch zieken en mensen met een beperking", presentation, PG Werkt Samen, 30 April
*2016 "Gezondheidsraad - hoe anders", presentation, Landelijke ME informatiedag, Den Haag, 12 May
*2016 [https://soundcloud.com/gl8-media/interview-guido-den-broeder-in-gezond-en-wel Gezond en Wel], interview, GL8 media, 18 November
*2018 [https://www.rtlnieuws.nl/lifestyle/gezondheid/artikel/4015001/me-patient-guido-kritisch-over-erkenning-ziekte-nieuwe "ME-patiënt Guido kritisch over erkenning ziekte: 'Nieuwe criteria onbekend'"], interview, RTL Nieuws, 19 March
*2019 [https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"], presentation, Commissie VWS, Tweede Kamer, 27 March

==Publications==
===Myalgic encephalomyelitis===
*2006 "Zorgindicatie", Lees ME 1, December, p50-51
*2007 "Richtlijnen en Knelpunten voor ME/CVS", Lees ME 2, May, p10-15
*2007 "De ontwikkeling van een Multidisciplinaire Richtlijn ME/CVS", Lees ME 3, October, p12-14
*2008 "Richtlijn in beslissend stadium", Lees ME 4, March, p11-14
*2008 "Richtlijn loopt vast, kerngroep vervangen", Lees ME 5, July, p11
*2008 "Testen op ME/CVS. Deel 1: de klachten", Lees ME 5, July, p37-41
*2008 "Testen op ME/CVS. Deel 2: de ziekte", Lees ME 6, December, p28-31
*2009 "Onderzoek NIVEL legt tekortschieten zorg bloot", Lees ME 7, April, p16-19
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_petitie.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], ErkenME, 12 May
*2009 "Smurf!", LeesME 9, December, p13-15
*2010 "De boom valt en niemand luistert", column, Lees ME 11, October
*2011 "Keuringspraktijk UWV. Inspectie Werk en Inkomen: bandbreedte in claimbeoordeling", Lees ME 12, February, p11-13
*2014 [http://www.meresearch.nl/PDF/20140208_STMER_DEPME_Overzicht_2012-2013.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2013"], Stichting ME Research, 8 February
*2014 [http://www.mevereniging.nl/PDF/20140329_MEVN_StandvanZaken.pdf "De postvirale hersenaandoening Myalgische Encefalomyelitis. Stand van zaken 2014"], ME Vereniging Nederland, 29 March
*2014 "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May
*2015 "NIH: 'Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome' (draft)", comments, ME Vereniging Nederland, 16 January
*2015 [http://www.mevereniging.nl/PDF/20150127_MEVN_TipsNieuwePatienten.pdf "Tips voor nieuwe ME-patiënten"], ME Vereniging Nederland, 27 January
*2015 "Antwoord op vragen van de Gezondheidsraad", letter, ME Vereniging Nederland, 14 August
*2015 [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
*2015 [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische Encephalomyelitis (ME)"], Mijn Lichaam, MediaPlanet, 16 September
*2018 [https://www.seniorenwijzer.eu/gezondheidsraad-zet-me-patienten-op-zijspoor/ "Gezondheidsraad zet ME-patiënten op zijspoor"], SeniorenWijzer, Spring
*2019 [https://www.seniorenwijzer.eu/myalgische-encefalomyelitis-postvirale-hersenziekte "Blijft de ziekte ME een ondergeschoven kindje?"], SeniorenWijzer, Summer, p24-25

===Chronic Fatigue Syndrome===
*2006 "Advies inzake het ZonMW-Onderzoeksprogramma Chronisch Vermoeidheids Syndroom", ME/CVS Vereniging,
*2006 "E. van de Putte, 'Exploring Chronic Fatigue Syndrome in Adolescents' (proefschrift)", book review, Lees ME 1, December, p42-45
*2007 "Gezondheidsraad, 'Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom'", book review, LeesME 2, May, p44-45
*2007 "Advies aan ZonMw inzake de tweede ronde van het Onderzoeksprogramma CVS", May
*2007 "NICE Guideline", review, Lees ME 3, October, p32-35
*2009 "Chronischevermoeidheidssyndroom: een psychoneuro-immunologisch perspectief", comments, Tijdschrift voor Psychiatrie, October, p786-787
*2010 "Het chronisch vermoeidheidssyndroom. De beoordeling door verzekeringsartsen", included comments, Inspectie Werk en Inkomen, Ministerie van Sociale Zaken en Werkgelegenheid, November
*2012 [http://www.mevereniging.nl/PDF/20120412_CBO_Conceptrichtlijn_CVS_commentaar_MEVereniging.pdf "Commentaar op het concept van de CBO-richtlijn CVS"], ME Vereniging Nederland, 12 April

===Patient advocacy===
*2010 "De ME/CVS Vereniging", LeesME 10, May, p8-10
*2012 "Samenwerkingsovereenkomst Samenwerkingsverband Pijnpatiënten naar één stem", December
*2013 [http://www.mevereniging.nl/PDF/20131015_Manifest.pdf "Een meedenkende patiënt is een goedkope(re) patiënt"], Manifest aan de Tweede Kamer, 15 October
*2015 [http://www.paraduin.nl/artikel-basisinkomen-chronisch-zieken/ "Vrijheid in solidariteit. Een basisinkomen voor chronisch zieken en mensen met een beperking"], Sociaal Bestek, June, p34-36
*2017 [http://www.mevereniging.nl/PDF/20170221_Visiedocument.pdf "De stem van de patiënten en hun organisaties gehoord. Drie pleidooien aan de politiek van ruim 5 miljoen mensen met een aandoening"], PatiëntenPerspectief 2021, 21 February

==Online Presence==
*[https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA DossierME] (YouTube)
*[https://nl.linkedin.com/in/guido-den-broeder-b4b39926 LinkedIn]
*[http://www.paraduin.nl/ Paraduin]

==Learn more==
*[https://ratings.fide.com/card.phtml?event=1000519 FIDE]
*[https://www.imdb.me/guidodenbroeder IMDb]
*[http://nl.wikisage.org/wiki/Guido_den_Broeder Wikisage]

==See also==
* [[Global Advocates for Myalgic Encephalomyelitis]]
* [[ME Vereniging Nederland]]
* [[Stichting ME Research]]

==References==
{{reflist}}

{{DEFAULTSORT:Broeder, Guido den}}
[[Category:Dutch advocates or allies]]
[[Category:Researchers]]
[[Category:People with ME]]

MEpedia talk:Manual of style

2019-09-16T16:20:00Z

Guido den Broeder:/* Link policy */ +

Questions about the Manual of Style? Add them here!

== Citations Guideline? ==
I notice that under "Learn more" there is "Citations Guideline to come".
 Is someone still planning on writing a Citations Guideline or is this something that can be removed?
 Thanks.
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:21, 14 March 2019 (EDT)
: I have removed that line. If anyone writes a “Citations guideline”, please put it back. Thanks.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)

== Dates ==
I am a bit confused about the “Dates” section. Are we supposed to use the three-letter abbreviation for months, or can we spell out the full month?
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)
:One consideration is refs: I think some templates will spit out an error message if you only use the first three leters? So that might be a reason to go with the full name, if we'd like to standardize this. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:13, 15 April 2019 (EDT)
::Three letter months eg Jun is what I've been doing, I think that may already be the standard. Templates give errors for DD MMM YYY and YYYY-MM but not MMM DD, YYYY - or MMM YYYY - which is our standard. I tried to improve the help information that comes up with date errors a while ago. I don't know why but the citation generator comes up with the wrong date styles. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:34, 15 April 2019 (EDT)
:::This is all new to me. I’ve seen [[User:Kmdenmark]] fixing “CS1” errors but I don’t know exactly what these errors are. Do we know which templates tend to spit out errors? Thanks.
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:16, 15 April 2019 (EDT)

:::: Here is a helpful Wikipedia link to CS1 errors for dates: https://en.wikipedia.org/wiki/Help:CS1_errors#ExamplesOfUnacceptableDates
:::: The most frequent error that our citation generator makes is "Ambiguous date range or year and month." E.g., it will generate a date as such: |date=2002-03. The computer doesn't know if you mean Mar 2002 or the years 2002-2003. The easiest correction is to change it to Mar 2002 or March 2002. You don't need to abbreviate the month, but if you do, the program wants a 3-letter abbreviation.
:::: The second most common date error is when the contributor uses the wrong punctuation. E.g., February 28 1900 will read as an error bec it has no comma; it must be changed to February 28, 1900 or 28 February 1900 or Feb 28, 1900 or 1900-02-28. Use of slashes also elicits an error message. E.g., 12/6/87 must be changed to December 6, 1987 or Dec 6, 1987 or 1987-12-06.
:::: I hope that helps. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 12:03, 16 April 2019 (EDT)
:::That’s very helpful, Karen! Thanks! Now we need to incorporate this into the documentation somewhere. (And clarify how dates are to be formatted in the body of the text, too.)
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:58, 16 April 2019 (EDT)
:::::Existing help info on dates when you click the ? icon brings up [[Help:CS1_errors]], see [[Help:CS1_errors#Check_date_values_in:_.7C.3Cparam1.3E.3D.2C_.7C.3Cparam2.3E.3D.2C_... here]] and [[MEpedia:Manual_of_style#Dates]] for some documentation. I've requested that developers look into if the American date setting is on, I am not sure but it's possible that this might fix the date generation formatting issues. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:26, 16 April 2019 (EDT)
::::::That’s very helpful too, Njt! Thanks! It would certainly be nice if we could solve some of the problems just by fixing a date setting!
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:49, 16 April 2019 (EDT)
:::::::I don't know if that date setting will help - it seems odd that there aren't any mentions of this problem for others. Something else I would like to sort is the automatic PMCc references that sometimes put "PMCPMC" or just "PMC" before the number, which breaks the links. It may need Lua changes to the Module though. Do you know about Lua? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:25, 26 April 2019 (EDT)
==Referencing chapters and referencing different pages ==
''Discussion moved from Canadian Consensus Criteria talk page '' by [[User:Notjusttired]]
Is an alternative way of referencing many chapters or may pages from the same source needed, maybe a new template?
Options seem to be using [[Template:Sfn]] or [https://en.wikipedia.org/wiki/Template:Rp Template:Rp] (not installed yet). I don't see anything in the [[Manual of style]] to say if we have a standard for this at the moment. I prefer using <nowiki ><ref name="ICC" />'''{{Rp|pages=13-19}}'''</nowiki > or <nowiki >{{Rp|at=Ch6}}</nowiki > since it displays in the article as [2]''':13-19''' for pages, or [2]:'''Ch6''' (or whatever you choose for chapters).
Thoughts? Tagging others to ask. [[User:JaimeS]] [[User:MEandCFS]] [[User:Canele]] [[User:Pyrrhus]] [[User:DxCFS]] [[User:Hip]] [[User:Brettz9]] [[User:Kmdenmark]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:11, 19 April 2019 (EDT)
:This solution seems perfect and actually is something I had looked for and failed to find on WP! So thank you! It's much cleaner and more amenable to editor re-use than other options I'm aware of. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:09, 19 April 2019 (EDT)
::Which solution? The Rp template? If so, this needs adding to the Manual of style and MEpedia or Help documentation. I have been going through the Wanted Pages - many of which come from links in the Citation templates - to work out which are worth covering here, and which can just straight links to Wikipedia explanations. Going to move this discussion to [[MEpedia_talk:Manual_of_style MOS talk page]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:02, 26 April 2019 (EDT)

== Where to attach citations? ==

Suppose several consecutive sentences have facts pulled from a single source. Should each sentence have the citation/footnote attached at the end, just the first, or just the last? I assume we're using a citation style that's consistent with wikipedia, or some other external resource. Maybe we should link to that for the details? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:05, June 13, 2019 (EDT)
:Wikipedia doesn't have a set citation style. We just use the references how they are automatically generated. Perhaps linking to well-referenced pages would be helpful? I would normally refer to the source in the first sentence and stick the citation at the end, especially because it needs highlighting that it's a single source. So it would read something like this: [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:13, June 13, 2019 (EDT) ''Esfandyarpour et al (2019) reported that WBCs... (more about same study). [3]''
::Paging [[User:JaimeS]]... :)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:27, June 14, 2019 (EDT)

===Re: Where to attach citations? -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:21, June 26, 2019 (EDT)===

: Generally speaking, you don't cite after every sentence, but after a block of facts that are from the same source. A rule of thumb I learned is to make sure that all the facts from that citation are in the same paragraph -- and that *no other references are used in that paragraph*. Then, cite at the end of the paragraph.

: Referencing the source by name early on is also a good tactic, as [[Notjusttired]] mentions.
:: If a sentence or paragraph contains multiple items of information and a source only supports the first, place that reference right after the first piece of info (after the comma, not before). Try to avoid sentences where it is unclear if a source supports the whole sentence or only the last part of it. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:50, September 15, 2019 (EDT)

==Spelling==
We should add this before Dates and numbers, stating US spelling. [http://translation-clinic.com/spelling-medical-terms-british-american-english/ This list] of science ones might be helpful.
Quote marks too, either " or ‟ ”, some languages eg German use different marks. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:25, August 10, 2019 (EDT)

==Dates and numbers ==
===Numbers ===
Add style for decimals and large numbers for Non-English speakers, eg 1,200 and 1.5 (not 1.000 and 1,5).
===Currency===
Do we put $5 mark unless non-US, or always mark as US? Link to [[w:Manual_of_Style/Dates_and_numbers Wikipedia's]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:25, August 10, 2019 (EDT)
Update: I looked it up.
{| class="wikitable alternate" id="currency"
!Style
!Note
|-
|A$1,000 US$1,000 NZ$1,000 CA$1,000
|Recommended style: 1-2 letter code before symbol. The value $1,000 assumed to be US dollars
|-
|USD1,000 AUS$5 EUR5,000
|Also acceptable: 3 letter currency code without symbol
|-
|$1M or $1m, $1bn
|Millions and billions
|-
|€5,000.25 HK$1,300.10
|Commas for thousands, dot for decimals
|-
|<source lang="text">€
£
¥</source>
|Source code way to create: €
£
¥
Visual editor toolbar can also be used
|}
Both Chicago and APA citation style suggest converting to US dollars, but I think it best to go with local currency with approx USD next to it. E.g. A$3m (US$1m). Euros are EUR5,000 (since we are using comma not dot, this is the UK way to write it), or €1,000.50, or 1 million euro - <code>€</code> in source editor will create this although it might be in the advanced options in visual editor too. For UK, £2,400 etc or GBP2,000. [[User:Pyrrhus]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:08, August 16, 2019 (EDT)
:Thanks for looking these things up! It certainly makes sense to include these. (in a concise way of course so as not to bore the reader!)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:03, September 9, 2019 (EDT)

==Drug names ==
I think we should add a small heading for this, or add a "Page names" heading covering both plurals in titles and drug names - I find it a bit hard to spot in Key Conventions. Drugs: Should the page be called after brand name or generic name? I think brand names are better known, but generic is less ambiguous and easier since some drugs have multiple brand names. Eg Lyrica or Pregabelin, Gabapentin or Neurotonin? But also Cymbalta and Yentreve both different brand names for the same drug. Do we encourage redirects for the alternative names? I think that would be a good idea, then if you do a link in the Visual editor the generic name and brand name pages are both suggested.
[[User:JaimeS]] [[User:Pyrrhus]] - also see above on examples / clarification for data and numbers section. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:10, September 9, 2019 (EDT)
:Personally, I always use the generic name, in both page names and in page content. But it certainly makes sense to have redirects from the brand names to the generic names!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:05, September 9, 2019 (EDT)

::[[User:Sisyphus]] [[User:Kmdenmark]] [[User:JaimeS]] [[User:JenB]] [[User:DxCFS]] [[User:MEandCFS]] - feedback would be welcome on drug names, dates (above), link policies (draft below), and topics not covered. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:19, September 15, 2019 (EDT)
:::By convention, refer to the generic name, unless a difference in composition between brands is relevant or to indicate that a specific brand was used. Page titles for generic names only, with sections to describe different brands. Redirect brand names to those sections. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 21:03, September 15, 2019 (EDT)
:::I agree with using the generic name as page title and then mention that it is more commonly known under its brand names such as ...--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)

==Link policy ==
I believe we need to add a new heading with an external link policy, and
The shortcuts [[MEpedia:MOSLINK]] and [[MEpedia:EL]] can be created to link to it.
I would suggest the content below: [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:38, September 15, 2019 (EDT)
<pre >
==Link policy==
Editors must not link to their personal website except a single link on an article when it is the official website for that topic, or a single link on the editor's user page. Editors with multiple websites may only link to one of their website. Promotion of a website you own is not allowed.

===Ref spam===
References, ''Learn more'' links and other external links must follow the [[MEpedia:Science guidelines]]. Personal websites must not be linked to and sources must be notable and reliable websites. Repeatedly citing personal websites is known as ''ref spam'', as described on [[WP:REFSPAM|Wikipedia].

===Websites in foreign languages===
Foreign language websites must not be referenced or linked to from English pages, unless the link or reference is the ''official website'' for the page's topic, e.g., a link to Fluge's website in Norwegian can only be used on Fluge's page.

Articles published in foreign language journals should be supported by an additional citation or Abstract in English. Audio and videos on languages that are not the same as the page's language must not be linked to or referenced.

===Promotional links ===
Links to reviews or recommendations about items for sale, e.g., books, videos, or supplements are not allowed. This includes videos, book reviews, blog links and other links.

==Affiliate links ==
External links that earn a commission, referral or other free are not allowed on MEpedia. These are typically used in items for sale and should be replaced by non-affilate links.

</pre >
[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:16, September 15, 2019 (EDT)
:I think not. For instance, the MEA sells [[The Purple Book]] for a small price. However, it contains their view on ME/CFS and hence to refer to it is important. Note that most scientific publications are behind a paywall, or you need a subscription to the journal. Books have to be bought as well. We have costs, and a desire to stay alive, so we are not giving you everything for free. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:27, September 15, 2019 (EDT)
:Wikipedia and Wikisage, meanwhile, are nobody's personal websites. We regularly link to them at 'Learn more' and will keep doing so. What language the information is written in is of no consequence. We will also link to personal websites like Hummingbirds and Sarah Myhill's wiki as often as we need to. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:37, September 15, 2019 (EDT)

:I think the bit on foreign languages might be a little too strong. I think it should be discouraged to refer to non-English sources, but in some cases, this is the only option. Some foreign researchers have made important or revealing statements in non-English languages only, for example Wyller supporting the Lightning process or Bleijenberg saying that severe ME/CFS patients do not want CBT because they prefer to have a stable situation. With google translate it's also becoming easier to check things in a language you're not fluent in. So in my view, referencing to a non-English source should be discouraged but allowed if it contains unique and important information.--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)
::The exception you suggest sounds good Guido, although I think it useful to suggest adding a second source in the page language that cites it, which is extremely easy using [http://scholar.google.com Google scholar]'s "cited by" option or researchgate. It should not be interpreted as excluding research simply because of its publication language, but a case of trying to include verification in the correct language too. Many foreign language source have English abstracts, but that will be little use on say, German language pages. You make a good point about Google translate [[User:Sisyphus]], but some sources are video or radio interviews and I am not sure of the accuracy of Japanese translations.
::Points about ME Association purple book are irrelevant: we won't be creating a page for it and it's sent free to all UK doctors if a patient requests it. Having said that, I don't think a link directly to the book is important, although it should be mentioned since it's free service within the UK. Wikisage is Guido's personal website, as we know and Wikipedia is already disallowed as a source.
::Jodi is dead as I'm sure you know, and her Hummingbirds Foundation charity continues. The final wording should not imply that an open access is expected linking to abstracts or referring to book page numbers is fine. As for Myhill's website, most statements are unreferenced so should be referred to as her view only, although her mitochondria research is peer reviewed. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 10:15, September 16, 2019 (EDT)
:::Please make sure to sign your posts, or it is impossible to respond.
:::Wikipedia, Wikisage and other online encyclopediae are indeed not considered reliable sources, but they are valid links for 'Learn more' sections. FYI, Wikisage counts over 56,000 articles, created by some 600 users (and many more that worked on them on Wikipedia). I've only written a few dozen myself. Which articles we can or can't create is not for you to decide. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:17, September 16, 2019 (EDT)

==Topics not covered here ==
I would like to add general statement that anything not covered should be assumed to follow Wikipedia's Manual of style, or Wikipedia Editorial guidelines. This should cover topics that do not have documentation yet. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:38, September 15, 2019 (EDT)
:You can't just invent this on the spot without consultation. The only things that must be followed are the core principles. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:46, September 15, 2019 (EDT)

:Agree with notjusttired that this the best option.--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)

MEpedia talk:Manual of style

2019-09-16T16:17:07Z

Guido den Broeder:/* Link policy */ re

Questions about the Manual of Style? Add them here!

== Citations Guideline? ==
I notice that under "Learn more" there is "Citations Guideline to come".
 Is someone still planning on writing a Citations Guideline or is this something that can be removed?
 Thanks.
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:21, 14 March 2019 (EDT)
: I have removed that line. If anyone writes a “Citations guideline”, please put it back. Thanks.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)

== Dates ==
I am a bit confused about the “Dates” section. Are we supposed to use the three-letter abbreviation for months, or can we spell out the full month?
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)
:One consideration is refs: I think some templates will spit out an error message if you only use the first three leters? So that might be a reason to go with the full name, if we'd like to standardize this. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:13, 15 April 2019 (EDT)
::Three letter months eg Jun is what I've been doing, I think that may already be the standard. Templates give errors for DD MMM YYY and YYYY-MM but not MMM DD, YYYY - or MMM YYYY - which is our standard. I tried to improve the help information that comes up with date errors a while ago. I don't know why but the citation generator comes up with the wrong date styles. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:34, 15 April 2019 (EDT)
:::This is all new to me. I’ve seen [[User:Kmdenmark]] fixing “CS1” errors but I don’t know exactly what these errors are. Do we know which templates tend to spit out errors? Thanks.
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:16, 15 April 2019 (EDT)

:::: Here is a helpful Wikipedia link to CS1 errors for dates: https://en.wikipedia.org/wiki/Help:CS1_errors#ExamplesOfUnacceptableDates
:::: The most frequent error that our citation generator makes is "Ambiguous date range or year and month." E.g., it will generate a date as such: |date=2002-03. The computer doesn't know if you mean Mar 2002 or the years 2002-2003. The easiest correction is to change it to Mar 2002 or March 2002. You don't need to abbreviate the month, but if you do, the program wants a 3-letter abbreviation.
:::: The second most common date error is when the contributor uses the wrong punctuation. E.g., February 28 1900 will read as an error bec it has no comma; it must be changed to February 28, 1900 or 28 February 1900 or Feb 28, 1900 or 1900-02-28. Use of slashes also elicits an error message. E.g., 12/6/87 must be changed to December 6, 1987 or Dec 6, 1987 or 1987-12-06.
:::: I hope that helps. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 12:03, 16 April 2019 (EDT)
:::That’s very helpful, Karen! Thanks! Now we need to incorporate this into the documentation somewhere. (And clarify how dates are to be formatted in the body of the text, too.)
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:58, 16 April 2019 (EDT)
:::::Existing help info on dates when you click the ? icon brings up [[Help:CS1_errors]], see [[Help:CS1_errors#Check_date_values_in:_.7C.3Cparam1.3E.3D.2C_.7C.3Cparam2.3E.3D.2C_... here]] and [[MEpedia:Manual_of_style#Dates]] for some documentation. I've requested that developers look into if the American date setting is on, I am not sure but it's possible that this might fix the date generation formatting issues. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:26, 16 April 2019 (EDT)
::::::That’s very helpful too, Njt! Thanks! It would certainly be nice if we could solve some of the problems just by fixing a date setting!
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:49, 16 April 2019 (EDT)
:::::::I don't know if that date setting will help - it seems odd that there aren't any mentions of this problem for others. Something else I would like to sort is the automatic PMCc references that sometimes put "PMCPMC" or just "PMC" before the number, which breaks the links. It may need Lua changes to the Module though. Do you know about Lua? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:25, 26 April 2019 (EDT)
==Referencing chapters and referencing different pages ==
''Discussion moved from Canadian Consensus Criteria talk page '' by [[User:Notjusttired]]
Is an alternative way of referencing many chapters or may pages from the same source needed, maybe a new template?
Options seem to be using [[Template:Sfn]] or [https://en.wikipedia.org/wiki/Template:Rp Template:Rp] (not installed yet). I don't see anything in the [[Manual of style]] to say if we have a standard for this at the moment. I prefer using <nowiki ><ref name="ICC" />'''{{Rp|pages=13-19}}'''</nowiki > or <nowiki >{{Rp|at=Ch6}}</nowiki > since it displays in the article as [2]''':13-19''' for pages, or [2]:'''Ch6''' (or whatever you choose for chapters).
Thoughts? Tagging others to ask. [[User:JaimeS]] [[User:MEandCFS]] [[User:Canele]] [[User:Pyrrhus]] [[User:DxCFS]] [[User:Hip]] [[User:Brettz9]] [[User:Kmdenmark]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:11, 19 April 2019 (EDT)
:This solution seems perfect and actually is something I had looked for and failed to find on WP! So thank you! It's much cleaner and more amenable to editor re-use than other options I'm aware of. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:09, 19 April 2019 (EDT)
::Which solution? The Rp template? If so, this needs adding to the Manual of style and MEpedia or Help documentation. I have been going through the Wanted Pages - many of which come from links in the Citation templates - to work out which are worth covering here, and which can just straight links to Wikipedia explanations. Going to move this discussion to [[MEpedia_talk:Manual_of_style MOS talk page]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:02, 26 April 2019 (EDT)

== Where to attach citations? ==

Suppose several consecutive sentences have facts pulled from a single source. Should each sentence have the citation/footnote attached at the end, just the first, or just the last? I assume we're using a citation style that's consistent with wikipedia, or some other external resource. Maybe we should link to that for the details? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:05, June 13, 2019 (EDT)
:Wikipedia doesn't have a set citation style. We just use the references how they are automatically generated. Perhaps linking to well-referenced pages would be helpful? I would normally refer to the source in the first sentence and stick the citation at the end, especially because it needs highlighting that it's a single source. So it would read something like this: [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:13, June 13, 2019 (EDT) ''Esfandyarpour et al (2019) reported that WBCs... (more about same study). [3]''
::Paging [[User:JaimeS]]... :)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:27, June 14, 2019 (EDT)

===Re: Where to attach citations? -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:21, June 26, 2019 (EDT)===

: Generally speaking, you don't cite after every sentence, but after a block of facts that are from the same source. A rule of thumb I learned is to make sure that all the facts from that citation are in the same paragraph -- and that *no other references are used in that paragraph*. Then, cite at the end of the paragraph.

: Referencing the source by name early on is also a good tactic, as [[Notjusttired]] mentions.
:: If a sentence or paragraph contains multiple items of information and a source only supports the first, place that reference right after the first piece of info (after the comma, not before). Try to avoid sentences where it is unclear if a source supports the whole sentence or only the last part of it. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:50, September 15, 2019 (EDT)

==Spelling==
We should add this before Dates and numbers, stating US spelling. [http://translation-clinic.com/spelling-medical-terms-british-american-english/ This list] of science ones might be helpful.
Quote marks too, either " or ‟ ”, some languages eg German use different marks. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:25, August 10, 2019 (EDT)

==Dates and numbers ==
===Numbers ===
Add style for decimals and large numbers for Non-English speakers, eg 1,200 and 1.5 (not 1.000 and 1,5).
===Currency===
Do we put $5 mark unless non-US, or always mark as US? Link to [[w:Manual_of_Style/Dates_and_numbers Wikipedia's]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:25, August 10, 2019 (EDT)
Update: I looked it up.
{| class="wikitable alternate" id="currency"
!Style
!Note
|-
|A$1,000 US$1,000 NZ$1,000 CA$1,000
|Recommended style: 1-2 letter code before symbol. The value $1,000 assumed to be US dollars
|-
|USD1,000 AUS$5 EUR5,000
|Also acceptable: 3 letter currency code without symbol
|-
|$1M or $1m, $1bn
|Millions and billions
|-
|€5,000.25 HK$1,300.10
|Commas for thousands, dot for decimals
|-
|<source lang="text">€
£
¥</source>
|Source code way to create: €
£
¥
Visual editor toolbar can also be used
|}
Both Chicago and APA citation style suggest converting to US dollars, but I think it best to go with local currency with approx USD next to it. E.g. A$3m (US$1m). Euros are EUR5,000 (since we are using comma not dot, this is the UK way to write it), or €1,000.50, or 1 million euro - <code>€</code> in source editor will create this although it might be in the advanced options in visual editor too. For UK, £2,400 etc or GBP2,000. [[User:Pyrrhus]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:08, August 16, 2019 (EDT)
:Thanks for looking these things up! It certainly makes sense to include these. (in a concise way of course so as not to bore the reader!)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:03, September 9, 2019 (EDT)

==Drug names ==
I think we should add a small heading for this, or add a "Page names" heading covering both plurals in titles and drug names - I find it a bit hard to spot in Key Conventions. Drugs: Should the page be called after brand name or generic name? I think brand names are better known, but generic is less ambiguous and easier since some drugs have multiple brand names. Eg Lyrica or Pregabelin, Gabapentin or Neurotonin? But also Cymbalta and Yentreve both different brand names for the same drug. Do we encourage redirects for the alternative names? I think that would be a good idea, then if you do a link in the Visual editor the generic name and brand name pages are both suggested.
[[User:JaimeS]] [[User:Pyrrhus]] - also see above on examples / clarification for data and numbers section. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:10, September 9, 2019 (EDT)
:Personally, I always use the generic name, in both page names and in page content. But it certainly makes sense to have redirects from the brand names to the generic names!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:05, September 9, 2019 (EDT)

::[[User:Sisyphus]] [[User:Kmdenmark]] [[User:JaimeS]] [[User:JenB]] [[User:DxCFS]] [[User:MEandCFS]] - feedback would be welcome on drug names, dates (above), link policies (draft below), and topics not covered. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:19, September 15, 2019 (EDT)
:::By convention, refer to the generic name, unless a difference in composition between brands is relevant or to indicate that a specific brand was used. Page titles for generic names only, with sections to describe different brands. Redirect brand names to those sections. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 21:03, September 15, 2019 (EDT)
:::I agree with using the generic name as page title and then mention that it is more commonly known under its brand names such as ...--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)

==Link policy ==
I believe we need to add a new heading with an external link policy, and
The shortcuts [[MEpedia:MOSLINK]] and [[MEpedia:EL]] can be created to link to it.
I would suggest the content below: [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:38, September 15, 2019 (EDT)
<pre >
==Link policy==
Editors must not link to their personal website except a single link on an article when it is the official website for that topic, or a single link on the editor's user page. Editors with multiple websites may only link to one of their website. Promotion of a website you own is not allowed.

===Ref spam===
References, ''Learn more'' links and other external links must follow the [[MEpedia:Science guidelines]]. Personal websites must not be linked to and sources must be notable and reliable websites. Repeatedly citing personal websites is known as ''ref spam'', as described on [[WP:REFSPAM|Wikipedia].

===Websites in foreign languages===
Foreign language websites must not be referenced or linked to from English pages, unless the link or reference is the ''official website'' for the page's topic, e.g., a link to Fluge's website in Norwegian can only be used on Fluge's page.

Articles published in foreign language journals should be supported by an additional citation or Abstract in English. Audio and videos on languages that are not the same as the page's language must not be linked to or referenced.

===Promotional links ===
Links to reviews or recommendations about items for sale, e.g., books, videos, or supplements are not allowed. This includes videos, book reviews, blog links and other links.

==Affiliate links ==
External links that earn a commission, referral or other free are not allowed on MEpedia. These are typically used in items for sale and should be replaced by non-affilate links.

</pre >
[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:16, September 15, 2019 (EDT)
:I think not. For instance, the MEA sells [[The Purple Book]] for a small price. However, it contains their view on ME/CFS and hence to refer to it is important. Note that most scientific publications are behind a paywall, or you need a subscription to the journal. Books have to be bought as well. We have costs, and a desire to stay alive, so we are not giving you everything for free. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:27, September 15, 2019 (EDT)
:Wikipedia and Wikisage, meanwhile, are nobody's personal websites. We regularly link to them at 'Learn more' and will keep doing so. What language the information is written in is of no consequence. We will also link to personal websites like Hummingbirds and Sarah Myhill's wiki as often as we need to. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:37, September 15, 2019 (EDT)

:I think the bit on foreign languages might be a little too strong. I think it should be discouraged to refer to non-English sources, but in some cases, this is the only option. Some foreign researchers have made important or revealing statements in non-English languages only, for example Wyller supporting the Lightning process or Bleijenberg saying that severe ME/CFS patients do not want CBT because they prefer to have a stable situation. With google translate it's also becoming easier to check things in a language you're not fluent in. So in my view, referencing to a non-English source should be discouraged but allowed if it contains unique and important information.--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)
::The exception you suggest sounds good Guido, although I think it useful to suggest adding a second source in the page language that cites it, which is extremely easy using [http://scholar.google.com Google scholar]'s "cited by" option or researchgate. It should not be interpreted as excluding research simply because of its publication language, but a case of trying to include verification in the correct language too. Many foreign language source have English abstracts, but that will be little use on say, German language pages. You make a good point about Google translate [[User:Sisyphus]], but some sources are video or radio interviews and I am not sure of the accuracy of Japanese translations.
::Points about ME Association purple book are irrelevant: we won't be creating a page for it and it's sent free to all UK doctors if a patient requests it. Having said that, I don't think a link directly to the book is important, although it should be mentioned since it's free service within the UK. Wikisage is Guido's personal website, as we know and Wikipedia is already disallowed as a source.
::Jodi is dead as I'm sure you know, and her Hummingbirds Foundation charity continues. The final wording should not imply that an open access is expected linking to abstracts or referring to book page numbers is fine. As for Myhill's website, most statements are unreferenced so should be referred to as her view only, although her mitochondria research is peer reviewed. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 10:15, September 16, 2019 (EDT)
:::Please make sure to sign your posts, or it is impossible to respond.
:::Wikipedia, Wikisage and other online encyclopediae are indeed not considered reliable sources, but they are valid links for 'Learn more' sections. FYI, Wikisage counts over 56,000 articles, created by some 600 users. I've only written a few dozen myself. Which articles we can or can't create is not for you to decide. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 12:17, September 16, 2019 (EDT)

==Topics not covered here ==
I would like to add general statement that anything not covered should be assumed to follow Wikipedia's Manual of style, or Wikipedia Editorial guidelines. This should cover topics that do not have documentation yet. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:38, September 15, 2019 (EDT)
:You can't just invent this on the spot without consultation. The only things that must be followed are the core principles. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:46, September 15, 2019 (EDT)

:Agree with notjusttired that this the best option.--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)

Guido den Broeder

2019-09-16T16:06:51Z

Guido den Broeder:rvv

MEpedia talk:Manual of style

2019-09-16T15:10:52Z

Guido den Broeder:/* Link policy */ rm unsigned post

Questions about the Manual of Style? Add them here!

== Citations Guideline? ==
I notice that under "Learn more" there is "Citations Guideline to come".
 Is someone still planning on writing a Citations Guideline or is this something that can be removed?
 Thanks.
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:21, 14 March 2019 (EDT)
: I have removed that line. If anyone writes a “Citations guideline”, please put it back. Thanks.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)

== Dates ==
I am a bit confused about the “Dates” section. Are we supposed to use the three-letter abbreviation for months, or can we spell out the full month?
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)
:One consideration is refs: I think some templates will spit out an error message if you only use the first three leters? So that might be a reason to go with the full name, if we'd like to standardize this. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:13, 15 April 2019 (EDT)
::Three letter months eg Jun is what I've been doing, I think that may already be the standard. Templates give errors for DD MMM YYY and YYYY-MM but not MMM DD, YYYY - or MMM YYYY - which is our standard. I tried to improve the help information that comes up with date errors a while ago. I don't know why but the citation generator comes up with the wrong date styles. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:34, 15 April 2019 (EDT)
:::This is all new to me. I’ve seen [[User:Kmdenmark]] fixing “CS1” errors but I don’t know exactly what these errors are. Do we know which templates tend to spit out errors? Thanks.
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:16, 15 April 2019 (EDT)

:::: Here is a helpful Wikipedia link to CS1 errors for dates: https://en.wikipedia.org/wiki/Help:CS1_errors#ExamplesOfUnacceptableDates
:::: The most frequent error that our citation generator makes is "Ambiguous date range or year and month." E.g., it will generate a date as such: |date=2002-03. The computer doesn't know if you mean Mar 2002 or the years 2002-2003. The easiest correction is to change it to Mar 2002 or March 2002. You don't need to abbreviate the month, but if you do, the program wants a 3-letter abbreviation.
:::: The second most common date error is when the contributor uses the wrong punctuation. E.g., February 28 1900 will read as an error bec it has no comma; it must be changed to February 28, 1900 or 28 February 1900 or Feb 28, 1900 or 1900-02-28. Use of slashes also elicits an error message. E.g., 12/6/87 must be changed to December 6, 1987 or Dec 6, 1987 or 1987-12-06.
:::: I hope that helps. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 12:03, 16 April 2019 (EDT)
:::That’s very helpful, Karen! Thanks! Now we need to incorporate this into the documentation somewhere. (And clarify how dates are to be formatted in the body of the text, too.)
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:58, 16 April 2019 (EDT)
:::::Existing help info on dates when you click the ? icon brings up [[Help:CS1_errors]], see [[Help:CS1_errors#Check_date_values_in:_.7C.3Cparam1.3E.3D.2C_.7C.3Cparam2.3E.3D.2C_... here]] and [[MEpedia:Manual_of_style#Dates]] for some documentation. I've requested that developers look into if the American date setting is on, I am not sure but it's possible that this might fix the date generation formatting issues. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:26, 16 April 2019 (EDT)
::::::That’s very helpful too, Njt! Thanks! It would certainly be nice if we could solve some of the problems just by fixing a date setting!
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:49, 16 April 2019 (EDT)
:::::::I don't know if that date setting will help - it seems odd that there aren't any mentions of this problem for others. Something else I would like to sort is the automatic PMCc references that sometimes put "PMCPMC" or just "PMC" before the number, which breaks the links. It may need Lua changes to the Module though. Do you know about Lua? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:25, 26 April 2019 (EDT)
==Referencing chapters and referencing different pages ==
''Discussion moved from Canadian Consensus Criteria talk page '' by [[User:Notjusttired]]
Is an alternative way of referencing many chapters or may pages from the same source needed, maybe a new template?
Options seem to be using [[Template:Sfn]] or [https://en.wikipedia.org/wiki/Template:Rp Template:Rp] (not installed yet). I don't see anything in the [[Manual of style]] to say if we have a standard for this at the moment. I prefer using <nowiki ><ref name="ICC" />'''{{Rp|pages=13-19}}'''</nowiki > or <nowiki >{{Rp|at=Ch6}}</nowiki > since it displays in the article as [2]''':13-19''' for pages, or [2]:'''Ch6''' (or whatever you choose for chapters).
Thoughts? Tagging others to ask. [[User:JaimeS]] [[User:MEandCFS]] [[User:Canele]] [[User:Pyrrhus]] [[User:DxCFS]] [[User:Hip]] [[User:Brettz9]] [[User:Kmdenmark]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:11, 19 April 2019 (EDT)
:This solution seems perfect and actually is something I had looked for and failed to find on WP! So thank you! It's much cleaner and more amenable to editor re-use than other options I'm aware of. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:09, 19 April 2019 (EDT)
::Which solution? The Rp template? If so, this needs adding to the Manual of style and MEpedia or Help documentation. I have been going through the Wanted Pages - many of which come from links in the Citation templates - to work out which are worth covering here, and which can just straight links to Wikipedia explanations. Going to move this discussion to [[MEpedia_talk:Manual_of_style MOS talk page]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:02, 26 April 2019 (EDT)

== Where to attach citations? ==

Suppose several consecutive sentences have facts pulled from a single source. Should each sentence have the citation/footnote attached at the end, just the first, or just the last? I assume we're using a citation style that's consistent with wikipedia, or some other external resource. Maybe we should link to that for the details? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:05, June 13, 2019 (EDT)
:Wikipedia doesn't have a set citation style. We just use the references how they are automatically generated. Perhaps linking to well-referenced pages would be helpful? I would normally refer to the source in the first sentence and stick the citation at the end, especially because it needs highlighting that it's a single source. So it would read something like this: [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:13, June 13, 2019 (EDT) ''Esfandyarpour et al (2019) reported that WBCs... (more about same study). [3]''
::Paging [[User:JaimeS]]... :)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:27, June 14, 2019 (EDT)

===Re: Where to attach citations? -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 14:21, June 26, 2019 (EDT)===

: Generally speaking, you don't cite after every sentence, but after a block of facts that are from the same source. A rule of thumb I learned is to make sure that all the facts from that citation are in the same paragraph -- and that *no other references are used in that paragraph*. Then, cite at the end of the paragraph.

: Referencing the source by name early on is also a good tactic, as [[Notjusttired]] mentions.
:: If a sentence or paragraph contains multiple items of information and a source only supports the first, place that reference right after the first piece of info (after the comma, not before). Try to avoid sentences where it is unclear if a source supports the whole sentence or only the last part of it. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:50, September 15, 2019 (EDT)

==Spelling==
We should add this before Dates and numbers, stating US spelling. [http://translation-clinic.com/spelling-medical-terms-british-american-english/ This list] of science ones might be helpful.
Quote marks too, either " or ‟ ”, some languages eg German use different marks. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:25, August 10, 2019 (EDT)

==Dates and numbers ==
===Numbers ===
Add style for decimals and large numbers for Non-English speakers, eg 1,200 and 1.5 (not 1.000 and 1,5).
===Currency===
Do we put $5 mark unless non-US, or always mark as US? Link to [[w:Manual_of_Style/Dates_and_numbers Wikipedia's]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:25, August 10, 2019 (EDT)
Update: I looked it up.
{| class="wikitable alternate" id="currency"
!Style
!Note
|-
|A$1,000 US$1,000 NZ$1,000 CA$1,000
|Recommended style: 1-2 letter code before symbol. The value $1,000 assumed to be US dollars
|-
|USD1,000 AUS$5 EUR5,000
|Also acceptable: 3 letter currency code without symbol
|-
|$1M or $1m, $1bn
|Millions and billions
|-
|€5,000.25 HK$1,300.10
|Commas for thousands, dot for decimals
|-
|<source lang="text">€
£
¥</source>
|Source code way to create: €
£
¥
Visual editor toolbar can also be used
|}
Both Chicago and APA citation style suggest converting to US dollars, but I think it best to go with local currency with approx USD next to it. E.g. A$3m (US$1m). Euros are EUR5,000 (since we are using comma not dot, this is the UK way to write it), or €1,000.50, or 1 million euro - <code>€</code> in source editor will create this although it might be in the advanced options in visual editor too. For UK, £2,400 etc or GBP2,000. [[User:Pyrrhus]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:08, August 16, 2019 (EDT)
:Thanks for looking these things up! It certainly makes sense to include these. (in a concise way of course so as not to bore the reader!)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:03, September 9, 2019 (EDT)

==Drug names ==
I think we should add a small heading for this, or add a "Page names" heading covering both plurals in titles and drug names - I find it a bit hard to spot in Key Conventions. Drugs: Should the page be called after brand name or generic name? I think brand names are better known, but generic is less ambiguous and easier since some drugs have multiple brand names. Eg Lyrica or Pregabelin, Gabapentin or Neurotonin? But also Cymbalta and Yentreve both different brand names for the same drug. Do we encourage redirects for the alternative names? I think that would be a good idea, then if you do a link in the Visual editor the generic name and brand name pages are both suggested.
[[User:JaimeS]] [[User:Pyrrhus]] - also see above on examples / clarification for data and numbers section. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:10, September 9, 2019 (EDT)
:Personally, I always use the generic name, in both page names and in page content. But it certainly makes sense to have redirects from the brand names to the generic names!
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:05, September 9, 2019 (EDT)

::[[User:Sisyphus]] [[User:Kmdenmark]] [[User:JaimeS]] [[User:JenB]] [[User:DxCFS]] [[User:MEandCFS]] - feedback would be welcome on drug names, dates (above), link policies (draft below), and topics not covered. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:19, September 15, 2019 (EDT)
:::By convention, refer to the generic name, unless a difference in composition between brands is relevant or to indicate that a specific brand was used. Page titles for generic names only, with sections to describe different brands. Redirect brand names to those sections. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 21:03, September 15, 2019 (EDT)
:::I agree with using the generic name as page title and then mention that it is more commonly known under its brand names such as ...--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)

==Link policy ==
I believe we need to add a new heading with an external link policy, and
The shortcuts [[MEpedia:MOSLINK]] and [[MEpedia:EL]] can be created to link to it.
I would suggest the content below: [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:38, September 15, 2019 (EDT)
<pre >
==Link policy==
Editors must not link to their personal website except a single link on an article when it is the official website for that topic, or a single link on the editor's user page. Editors with multiple websites may only link to one of their website. Promotion of a website you own is not allowed.

===Ref spam===
References, ''Learn more'' links and other external links must follow the [[MEpedia:Science guidelines]]. Personal websites must not be linked to and sources must be notable and reliable websites. Repeatedly citing personal websites is known as ''ref spam'', as described on [[WP:REFSPAM|Wikipedia].

===Websites in foreign languages===
Foreign language websites must not be referenced or linked to from English pages, unless the link or reference is the ''official website'' for the page's topic, e.g., a link to Fluge's website in Norwegian can only be used on Fluge's page.

Articles published in foreign language journals should be supported by an additional citation or Abstract in English. Audio and videos on languages that are not the same as the page's language must not be linked to or referenced.

===Promotional links ===
Links to reviews or recommendations about items for sale, e.g., books, videos, or supplements are not allowed. This includes videos, book reviews, blog links and other links.

==Affiliate links ==
External links that earn a commission, referral or other free are not allowed on MEpedia. These are typically used in items for sale and should be replaced by non-affilate links.

</pre >
[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 20:16, September 15, 2019 (EDT)
:I think not. For instance, the MEA sells [[The Purple Book]] for a small price. However, it contains their view on ME/CFS and hence to refer to it is important. Note that most scientific publications are behind a paywall, or you need a subscription to the journal. Books have to be bought as well. We have costs, and a desire to stay alive, so we are not giving you everything for free. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:27, September 15, 2019 (EDT)
:Wikipedia and Wikisage, meanwhile, are nobody's personal websites. We regularly link to them at 'Learn more' and will keep doing so. What language the information is written in is of no consequence. We will also link to personal websites like Hummingbirds and Sarah Myhill's wiki as often as we need to. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 20:37, September 15, 2019 (EDT)

:I think the bit on foreign languages might be a little too strong. I think it should be discouraged to refer to non-English sources, but in some cases, this is the only option. Some foreign researchers have made important or revealing statements in non-English languages only, for example Wyller supporting the Lightning process or Bleijenberg saying that severe ME/CFS patients do not want CBT because they prefer to have a stable situation. With google translate it's also becoming easier to check things in a language you're not fluent in. So in my view, referencing to a non-English source should be discouraged but allowed if it contains unique and important information.--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)

==Topics not covered here ==
I would like to add general statement that anything not covered should be assumed to follow Wikipedia's Manual of style, or Wikipedia Editorial guidelines. This should cover topics that do not have documentation yet. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:38, September 15, 2019 (EDT)
:You can't just invent this on the spot without consultation. The only things that must be followed are the core principles. [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 17:46, September 15, 2019 (EDT)

:Agree with notjusttired that this the best option.--[[User:Sisyphus|Sisyphus]] ([[User talk:Sisyphus|talk]]) 06:18, September 16, 2019 (EDT)

Talk:Glossary

2019-09-16T15:08:41Z

Guido den Broeder:/* Split? */ ahem

Guido den Broeder

2019-09-16T15:02:52Z

Guido den Broeder:/* Advocacy */ ref no disability benefits

Steungroep ME en Arbeidsongeschiktheid

2019-09-16T14:51:23Z

Guido den Broeder:rv - already sourced

The Stichting '''Steungroep ME en Arbeidsongeschiktheid''' (Support Group ME and Disability) is a national foundation in the [[Netherlands]] supporting patients on social and financial aspects of their illness.

==Aims==

==Activities==

==Funding==

==Notable people==
* [[Ynske Jansen]] (founder)

==Online presence==
* [https://www.steungroep.nl Website]

==History==
The organization has accepted the 2018 advice of the Dutch Health Council. It considers ME and CFS to be synonyms, but despises the name CFS (Jansen, who was on the committee: ''"CFS is nothing"'').
<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref>

==Learn more==

==See also==

==References==
{{reflist}}

[[Category:Patient groups]] [[Category:Dutch patient groups]]

User:Guido den Broeder

2019-09-16T14:48:39Z

Guido den Broeder:3 userboxes

{{User:Guido_den_Broeder/Navigation}}

{{Userbox scientist}}{{Userbox Nederlands/nl}}{{Userbox deutsch/de}}
 

<table style="float:left; background-color:#CCFFFF; border:2px solid black; margin-top:16px;" cellpadding=3px cellspacing=0px>
<tr style="background-color:#FFFFFF;">
<td colspan=2>'''My affiliations'''</td>
</tr>
<tr><td>[http://www.mevereniging.nl ME Vereniging Nederland]</td><td>chairman</td></tr>
<tr><td>[http://www.meresearch.nl Stichting ME Research]</td><td>president</td></tr>
<tr><td>[http://www.wikisage.org Wikisage]</td><td>owner</td></tr>
</table>

Guido den Broeder

2019-09-16T14:39:36Z

Guido den Broeder:rvv

[[File:20170811_Guido_den_Broeder.jpg|240px|thumb|right|Photo: Dutch Casting Agency (2017)]]
'''Guido den Broeder''' (Den Haag, 28 February 1957) is a Dutch writer, econometrician, politician and chess player. He is a [[myalgic encephalomyelitis]] patient (since 1987) and advocate. He lives in Rotterdam, the [[Netherlands]].

==Career==
Den Broeder gained international fame with the development of the macro-econometric model AMO-K, which for some 15 years was used to study a number of strategic policy scenarios for The Netherlands.<ref>1985 J.A.M. Heijke, J. de Koning, R.J.M. Maas, G. den Broeder, "A model of the Dutch Labour Market (AMO-K)", De Economist, 133-4</ref><ref>1988 G. den Broeder, "Alternatieve heffingsgrondslagen voor de sociale zekerheid. Micro-, meso- en macro-economische effecten", Nederlands Economisch Instituut / Magnana Mu Publishing & Research</ref> From 1990-1995, he was a member of the Economic Committee of the Dutch political party GroenLinks.<ref>1993 G. den Broeder, "GroenLinks 1995-1998, Financiële vertaling van het ontwerp-verkiezingsprogramma", Economische Commissie GroenLinks, 2 August</ref> He was a representative in Rotterdam from 1994 to 2002.

An accomplished chess player, he gained the title of FIDE Master and became champion of the Rotterdam region on two occasions. He finished second in the Dutch Correspondence Chess championship of 1980/81, and authored a number of tournament books.<ref>1994 J. de Hooge, M. de Zeeuw, H. van Bekkum (eds.), "De weg van Kralingen naar CAP VOLMAC Rotterdam. 1924-1994, 70 jaar van een topclub", Rotterdam: Cap Volmac BV, p195-197</ref><ref>2016 Nederlandse Bond van Correspondentieschakers, "Correspondentieschaken in Nederland. 50 Jaar NBC 1966-2016", Gent: Thinkers Publishing, ISBN 978-90-425100-4-4, p116-119</ref>

On 1 April 2015, as a protest move, he declared his Rotterdam home as part of a micronation, Paraduin. This was after The Netherlands denied him welfare and the Dutch court refused to hear his case leaving him without means to survive.<ref>2014 [http://www.mevereniging.nl/rotterdam-weigert-bijstand-aan-voorzitter-me-vereniging/ "Rotterdam weigert bijstand aan voorzitter ME Vereniging"], news item, ME Vereniging Nederland, 13 July</ref><ref>2015 [http://www.paraduin.nl/2015/07/01/weg-uit-nederland/ "Weg uit Nederland"], news item, Paraduin, 1 July</ref>

Den Broeder was an executive producer of the action thriller ''The Russian Bride'', released in 2019. It features a desparate father going to extreme lengths to find a cure for his son, who suffers from a [[mitochondria]]l disease.<ref>2018 [http://www.paraduin.nl/2018/12/18/the-russian-bride-comes-to-porto/ The Russian Bride comes to Porto], news item, Paraduin, 18 December</ref> He also wrote the sciencefiction/fantasy novel ''Bellerophon'', about a young man with brain damage who has to find his way in a strange world to fulfil a heroic destiny.<ref>2017 Ogidius, "Bellerophon", Paraduin Productions, October</ref>

==Advocacy==
On May 12, 1987, Den Broeder fell ill with myalgic encephalomyelitis, and never recovered. The diagnosis arrived at his house while he was playing a chess tournament in Hungary in 1990, where he succumbed to exhaustion halfway the event.<ref>2009 [http://www.chessgames.com/perl/chessplayer?pid=94920 "The chess games of Guido den Broeder"], comment, Chessgames.com, 19 April</ref> During the years that followed, he tried but failed to receive [[disability benefits]], despite having been fully insured.

In a letter to GroenLinks chairman Ab Harrewijn, 1996, Den Broeder asked for political attention to the plight of ME patients in the Netherlands.<ref>1996 G. den Broeder, letter to Ab Harrewijn, 14 February</ref> A budget of € 2.72 million (6 million gulden) was eventually set aside by Dutch parliament for biomedical research into ME. However, after the Gezondheidsraad produced an advice on [[Chronic Fatigue Syndrome]] (CFS) in 2005, the money was squandered on studies into [[cognitive behavioural therapy]] (CBT) and [[graded exercise therapy]] (GET) for CFS patients.

In 2004 Den Broeder was one of the leaders of a patient revolt against the board of the government-subsidized [[ME/CVS-Stichting Nederland]], which denied ME and CFS patients influence on the foundation's positions and activities. To give patients a voice and counter the foundation's propaganda of CBT/GET, he co-founded the [[ME en CVS Vereniging]] in 2005, later renamed to ME/CVS Vereniging. As a chairmain (two periods) and [[guideline]] representative, he educated patients and doctors about the difference between ME and CFS. He furthermore criticised the publications of the Dutch Health Council and the decisions of the Dutch minister of health.

When in 2011 the [[International Consensus Criteria]] for ME were published and CFS got classified away from ME in the [[ICD10-CM]] (published in 2015), the decision was made to disband the ME/CVS Vereniging. Den Broeder founded the [[ME Vereniging Nederland]], the national patient organization for [[ME]] in the Netherlands. He has served as chairman until this day. Also in 2011, he founded and became president of the [[Stichting ME Research]], a foundation whose purpose is to conduct, promote and interpret research into myalgic encephalomyelitis. He initiated several ongoing projects, including ''Wetenschap voor Patiënten'' ([[Science for Patients]]). Den Broeder's YouTube channel [[DossierME]] shows presentations and interviews from that project.

Den Broeder is a [[basic income]] advocate,<ref>1991 G. den Broeder, A. de Roo, "Basisinkomen - omdat het kan", GroenLinks</ref> and served as a board member of the Vereniging Basisinkomen for 13 years. On several occasions he has suggested that ME patients would profit from the introduction of a basic income, leaving behind the 'unfavorable lottery' that the current system for disability benefits has to offer. Findings by the Stichting ME Research indicate that half of the ME patients in The Netherlands have no or insufficient income.

Together with [[Wendy Boutilier]] and [[John Gabor]], Den Broeder founded the international group [[Global Advocates for Myalgic Encephalomyelitis]] in 2016. GAME supports the application of the International Consensus Criteria for ME.

==Education==
* 1981 Drs in econometrics, Erasmus University Rotterdam

==Interviews & Talks==
*2003 "Van willekeur naar basisinkomen", Attac-lecture, Den Haag, 25 February
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_overhandiging.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], speech, ErkenME, 12 May
*2010 "Ervaringen met behandelingen bij ME/CVS", presentation, Landelijke ME informatiedag, Amersfoort, 8 September
*2011 "Knelpunten in de zorg voor ME-patiënten", presentation, Landelijke ME informatiedag, Driebergen, 12 May
*2013 [https://www.youtube.com/watch?v=T1nSIvR3Bfk Wetenschap voor Patiënten], interview, DossierME, 21 June
*2014 "Preconcept Multidisciplinaire Richtlijn ME", presentation, Landelijke ME informatiedag, Utrecht, 12 May
*2015 "Basisinkomen voor chronisch zieken en mensen met een beperking", presentation, PG Werkt Samen, 30 April
*2016 "Gezondheidsraad - hoe anders", presentation, Landelijke ME informatiedag, Den Haag, 12 May
*2016 [https://soundcloud.com/gl8-media/interview-guido-den-broeder-in-gezond-en-wel Gezond en Wel], interview, GL8 media, 18 November
*2018 [https://www.rtlnieuws.nl/lifestyle/gezondheid/artikel/4015001/me-patient-guido-kritisch-over-erkenning-ziekte-nieuwe "ME-patiënt Guido kritisch over erkenning ziekte: 'Nieuwe criteria onbekend'"], interview, RTL Nieuws, 19 March
*2019 [https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"], presentation, Commissie VWS, Tweede Kamer, 27 March

==Publications==
===Myalgic encephalomyelitis===
*2006 "Zorgindicatie", Lees ME 1, December, p50-51
*2007 "Richtlijnen en Knelpunten voor ME/CVS", Lees ME 2, May, p10-15
*2007 "De ontwikkeling van een Multidisciplinaire Richtlijn ME/CVS", Lees ME 3, October, p12-14
*2008 "Richtlijn in beslissend stadium", Lees ME 4, March, p11-14
*2008 "Richtlijn loopt vast, kerngroep vervangen", Lees ME 5, July, p11
*2008 "Testen op ME/CVS. Deel 1: de klachten", Lees ME 5, July, p37-41
*2008 "Testen op ME/CVS. Deel 2: de ziekte", Lees ME 6, December, p28-31
*2009 "Onderzoek NIVEL legt tekortschieten zorg bloot", Lees ME 7, April, p16-19
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_petitie.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], ErkenME, 12 May
*2009 "Smurf!", LeesME 9, December, p13-15
*2010 "De boom valt en niemand luistert", column, Lees ME 11, October
*2011 "Keuringspraktijk UWV. Inspectie Werk en Inkomen: bandbreedte in claimbeoordeling", Lees ME 12, February, p11-13
*2014 [http://www.meresearch.nl/PDF/20140208_STMER_DEPME_Overzicht_2012-2013.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2013"], Stichting ME Research, 8 February
*2014 [http://www.mevereniging.nl/PDF/20140329_MEVN_StandvanZaken.pdf "De postvirale hersenaandoening Myalgische Encefalomyelitis. Stand van zaken 2014"], ME Vereniging Nederland, 29 March
*2014 "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May
*2015 "NIH: 'Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome' (draft)", comments, ME Vereniging Nederland, 16 January
*2015 [http://www.mevereniging.nl/PDF/20150127_MEVN_TipsNieuwePatienten.pdf "Tips voor nieuwe ME-patiënten"], ME Vereniging Nederland, 27 January
*2015 "Antwoord op vragen van de Gezondheidsraad", letter, ME Vereniging Nederland, 14 August
*2015 [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
*2015 [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische Encephalomyelitis (ME)"], Mijn Lichaam, MediaPlanet, 16 September
*2018 [https://www.seniorenwijzer.eu/gezondheidsraad-zet-me-patienten-op-zijspoor/ "Gezondheidsraad zet ME-patiënten op zijspoor"], SeniorenWijzer, Spring
*2019 [https://www.seniorenwijzer.eu/myalgische-encefalomyelitis-postvirale-hersenziekte "Blijft de ziekte ME een ondergeschoven kindje?"], SeniorenWijzer, Summer, p24-25

===Chronic Fatigue Syndrome===
*2006 "Advies inzake het ZonMW-Onderzoeksprogramma Chronisch Vermoeidheids Syndroom", ME/CVS Vereniging,
*2006 "E. van de Putte, 'Exploring Chronic Fatigue Syndrome in Adolescents' (proefschrift)", book review, Lees ME 1, December, p42-45
*2007 "Gezondheidsraad, 'Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom'", book review, LeesME 2, May, p44-45
*2007 "Advies aan ZonMw inzake de tweede ronde van het Onderzoeksprogramma CVS", May
*2007 "NICE Guideline", review, Lees ME 3, October, p32-35
*2009 "Chronischevermoeidheidssyndroom: een psychoneuro-immunologisch perspectief", comments, Tijdschrift voor Psychiatrie, October, p786-787
*2010 "Het chronisch vermoeidheidssyndroom. De beoordeling door verzekeringsartsen", included comments, Inspectie Werk en Inkomen, Ministerie van Sociale Zaken en Werkgelegenheid, November
*2012 [http://www.mevereniging.nl/PDF/20120412_CBO_Conceptrichtlijn_CVS_commentaar_MEVereniging.pdf "Commentaar op het concept van de CBO-richtlijn CVS"], ME Vereniging Nederland, 12 April

===Patient advocacy===
*2010 "De ME/CVS Vereniging", LeesME 10, May, p8-10
*2012 "Samenwerkingsovereenkomst Samenwerkingsverband Pijnpatiënten naar één stem", December
*2013 [http://www.mevereniging.nl/PDF/20131015_Manifest.pdf "Een meedenkende patiënt is een goedkope(re) patiënt"], Manifest aan de Tweede Kamer, 15 October
*2015 [http://www.paraduin.nl/artikel-basisinkomen-chronisch-zieken/ "Vrijheid in solidariteit. Een basisinkomen voor chronisch zieken en mensen met een beperking"], Sociaal Bestek, June, p34-36
*2017 [http://www.mevereniging.nl/PDF/20170221_Visiedocument.pdf "De stem van de patiënten en hun organisaties gehoord. Drie pleidooien aan de politiek van ruim 5 miljoen mensen met een aandoening"], PatiëntenPerspectief 2021, 21 February

==Online Presence==
*[https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA DossierME] (YouTube)
*[https://nl.linkedin.com/in/guido-den-broeder-b4b39926 LinkedIn]
*[http://www.paraduin.nl/ Paraduin]

==Learn more==
*[https://ratings.fide.com/card.phtml?event=1000519 FIDE]
*[https://www.imdb.me/guidodenbroeder IMDb]
*[http://nl.wikisage.org/wiki/Guido_den_Broeder Wikisage]

==See also==
* [[Global Advocates for Myalgic Encephalomyelitis]]
* [[ME Vereniging Nederland]]
* [[Stichting ME Research]]

==References==
{{reflist}}

{{DEFAULTSORT:Broeder, Guido den}}
[[Category:Dutch advocates or allies]]
[[Category:Researchers]]
[[Category:People with ME]]

Guido den Broeder

2019-09-16T14:18:17Z

Guido den Broeder:rvv

[[File:20170811_Guido_den_Broeder.jpg|240px|thumb|right|Photo: Dutch Casting Agency (2017)]]
'''Guido den Broeder''' (Den Haag, 28 February 1957) is a Dutch writer, econometrician, politician and chess player. He is a [[myalgic encephalomyelitis]] patient (since 1987) and advocate. He lives in Rotterdam, the [[Netherlands]].

==Career==
Den Broeder gained international fame with the development of the macro-econometric model AMO-K, which for some 15 years was used to study a number of strategic policy scenarios for The Netherlands.<ref>1985 J.A.M. Heijke, J. de Koning, R.J.M. Maas, G. den Broeder, "A model of the Dutch Labour Market (AMO-K)", De Economist, 133-4</ref><ref>1988 G. den Broeder, "Alternatieve heffingsgrondslagen voor de sociale zekerheid. Micro-, meso- en macro-economische effecten", Nederlands Economisch Instituut / Magnana Mu Publishing & Research</ref> From 1990-1995, he was a member of the Economic Committee of the Dutch political party GroenLinks.<ref>1993 G. den Broeder, "GroenLinks 1995-1998, Financiële vertaling van het ontwerp-verkiezingsprogramma", Economische Commissie GroenLinks, 2 August</ref> He was a representative in Rotterdam from 1994 to 2002.

An accomplished chess player, he gained the title of FIDE Master and became champion of the Rotterdam region on two occasions. He finished second in the Dutch Correspondence Chess championship of 1980/81, and authored a number of tournament books.<ref>1994 J. de Hooge, M. de Zeeuw, H. van Bekkum (eds.), "De weg van Kralingen naar CAP VOLMAC Rotterdam. 1924-1994, 70 jaar van een topclub", Rotterdam: Cap Volmac BV, p195-197</ref><ref>2016 Nederlandse Bond van Correspondentieschakers, "Correspondentieschaken in Nederland. 50 Jaar NBC 1966-2016", Gent: Thinkers Publishing, ISBN 978-90-425100-4-4, p116-119</ref>

On 1 April 2015, as a protest move, he declared his Rotterdam home as part of a micronation, Paraduin. This was after The Netherlands denied him welfare and the Dutch court refused to hear his case leaving him without means to survive.<ref>2014 [http://www.mevereniging.nl/rotterdam-weigert-bijstand-aan-voorzitter-me-vereniging/ "Rotterdam weigert bijstand aan voorzitter ME Vereniging"], news item, ME Vereniging Nederland, 13 July</ref><ref>2015 [http://www.paraduin.nl/2015/07/01/weg-uit-nederland/ "Weg uit Nederland"], news item, Paraduin, 1 July</ref>

Den Broeder was an executive producer of the action thriller ''The Russian Bride'', released in 2019. It features a desparate father going to extreme lengths to find a cure for his son, who suffers from a [[mitochondria]]l disease.<ref>2018 [http://www.paraduin.nl/2018/12/18/the-russian-bride-comes-to-porto/ The Russian Bride comes to Porto], news item, Paraduin, 18 December</ref> He also wrote the sciencefiction/fantasy novel ''Bellerophon'', about a young man with brain damage who has to find his way in a strange world to fulfil a heroic destiny.<ref>2017 Ogidius, "Bellerophon", Paraduin Productions, October</ref>

==Advocacy==
On May 12, 1987, Den Broeder fell ill with myalgic encephalomyelitis, and never recovered. The diagnosis arrived at his house while he was playing a chess tournament in Hungary in 1990, where he succumbed to exhaustion halfway the event.<ref>2009 [http://www.chessgames.com/perl/chessplayer?pid=94920 "The chess games of Guido den Broeder"], comment, Chessgames.com, 19 April</ref> During the years that followed, he tried but failed to receive [[disability benefits]], despite having been fully insured.

In a letter to GroenLinks chairman Ab Harrewijn, 1996, Den Broeder asked for political attention to the plight of ME patients in the Netherlands.<ref>1996 G. den Broeder, letter to Ab Harrewijn, 14 February</ref> A budget of € 2.72 million (6 million gulden) was eventually set aside by Dutch parliament for biomedical research into ME. However, after the Gezondheidsraad produced an advice on [[Chronic Fatigue Syndrome]] (CFS) in 2005, the money was squandered on studies into [[cognitive behavioural therapy]] (CBT) and [[graded exercise therapy]] (GET) for CFS patients.

In 2004 Den Broeder was one of the leaders of a patient revolt against the board of the government-subsidized [[ME/CVS-Stichting Nederland]], which denied ME and CFS patients influence on the foundation's positions and activities. To give patients a voice and counter the foundation's propaganda of CBT/GET, he co-founded the [[ME en CVS Vereniging]] in 2005, later renamed to ME/CVS Vereniging. As a chairmain (two periods) and [[guideline]] representative, he educated patients and doctors about the difference between ME and CFS. He furthermore criticised the publications of the Dutch Health Council and the decisions of the Dutch minister of health.

When in 2011 the [[International Consensus Criteria]] for ME were published and CFS got classified away from ME in the [[ICD10-CM]] (published in 2015), the decision was made to disband the ME/CVS Vereniging. Den Broeder founded the [[ME Vereniging Nederland]], the national patient organization for [[ME]] in the Netherlands. He has served as chairman until this day. Also in 2011, he founded and became president of the [[Stichting ME Research]], a foundation whose purpose is to conduct, promote and interpret research into myalgic encephalomyelitis. He initiated several ongoing projects, including ''Wetenschap voor Patiënten'' ([[Science for Patients]]). Den Broeder's YouTube channel [[DossierME]] shows presentations and interviews from that project.

Den Broeder is a [[basic income]] advocate,<ref>1991 G. den Broeder, A. de Roo, "Basisinkomen - omdat het kan", GroenLinks</ref> and served as a board member of the Vereniging Basisinkomen for 13 years. On several occasions he has suggested that ME patients would profit from the introduction of a basic income, leaving behind the 'unfavorable lottery' that the current system for disability benefits has to offer. Findings by the Stichting ME Research indicate that half of the ME patients in The Netherlands have no or insufficient income.

Together with [[Wendy Boutilier]] and [[John Gabor]], Den Broeder founded the international group [[Global Advocates for Myalgic Encephalomyelitis]] in 2016. GAME supports the application of the International Consensus Criteria for ME.

==Education==
* 1981 Drs in econometrics, Erasmus University Rotterdam

==Interviews & Talks==
*2003 "Van willekeur naar basisinkomen", Attac-lecture, Den Haag, 25 February
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_overhandiging.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], speech, ErkenME, 12 May
*2010 "Ervaringen met behandelingen bij ME/CVS", presentation, Landelijke ME informatiedag, Amersfoort, 8 September
*2011 "Knelpunten in de zorg voor ME-patiënten", presentation, Landelijke ME informatiedag, Driebergen, 12 May
*2013 [https://www.youtube.com/watch?v=T1nSIvR3Bfk Wetenschap voor Patiënten], interview, DossierME, 21 June
*2014 "Preconcept Multidisciplinaire Richtlijn ME", presentation, Landelijke ME informatiedag, Utrecht, 12 May
*2015 "Basisinkomen voor chronisch zieken en mensen met een beperking", presentation, PG Werkt Samen, 30 April
*2016 "Gezondheidsraad - hoe anders", presentation, Landelijke ME informatiedag, Den Haag, 12 May
*2016 [https://soundcloud.com/gl8-media/interview-guido-den-broeder-in-gezond-en-wel Gezond en Wel], interview, GL8 media, 18 November
*2018 [https://www.rtlnieuws.nl/lifestyle/gezondheid/artikel/4015001/me-patient-guido-kritisch-over-erkenning-ziekte-nieuwe "ME-patiënt Guido kritisch over erkenning ziekte: 'Nieuwe criteria onbekend'"], interview, RTL Nieuws, 19 March
*2019 [https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"], presentation, Commissie VWS, Tweede Kamer, 27 March

==Publications==
===Myalgic encephalomyelitis===
*2006 "Zorgindicatie", Lees ME 1, December, p50-51
*2007 "Richtlijnen en Knelpunten voor ME/CVS", Lees ME 2, May, p10-15
*2007 "De ontwikkeling van een Multidisciplinaire Richtlijn ME/CVS", Lees ME 3, October, p12-14
*2008 "Richtlijn in beslissend stadium", Lees ME 4, March, p11-14
*2008 "Richtlijn loopt vast, kerngroep vervangen", Lees ME 5, July, p11
*2008 "Testen op ME/CVS. Deel 1: de klachten", Lees ME 5, July, p37-41
*2008 "Testen op ME/CVS. Deel 2: de ziekte", Lees ME 6, December, p28-31
*2009 "Onderzoek NIVEL legt tekortschieten zorg bloot", Lees ME 7, April, p16-19
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_petitie.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], ErkenME, 12 May
*2009 "Smurf!", LeesME 9, December, p13-15
*2010 "De boom valt en niemand luistert", column, Lees ME 11, October
*2011 "Keuringspraktijk UWV. Inspectie Werk en Inkomen: bandbreedte in claimbeoordeling", Lees ME 12, February, p11-13
*2014 [http://www.meresearch.nl/PDF/20140208_STMER_DEPME_Overzicht_2012-2013.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2013"], Stichting ME Research, 8 February
*2014 [http://www.mevereniging.nl/PDF/20140329_MEVN_StandvanZaken.pdf "De postvirale hersenaandoening Myalgische Encefalomyelitis. Stand van zaken 2014"], ME Vereniging Nederland, 29 March
*2014 "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May
*2015 "NIH: 'Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome' (draft)", comments, ME Vereniging Nederland, 16 January
*2015 [http://www.mevereniging.nl/PDF/20150127_MEVN_TipsNieuwePatienten.pdf "Tips voor nieuwe ME-patiënten"], ME Vereniging Nederland, 27 January
*2015 "Antwoord op vragen van de Gezondheidsraad", letter, ME Vereniging Nederland, 14 August
*2015 [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
*2015 [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische Encephalomyelitis (ME)"], Mijn Lichaam, MediaPlanet, 16 September
*2018 [https://www.seniorenwijzer.eu/gezondheidsraad-zet-me-patienten-op-zijspoor/ "Gezondheidsraad zet ME-patiënten op zijspoor"], SeniorenWijzer, Spring
*2019 [https://www.seniorenwijzer.eu/myalgische-encefalomyelitis-postvirale-hersenziekte "Blijft de ziekte ME een ondergeschoven kindje?"], SeniorenWijzer, Summer, p24-25

===Chronic Fatigue Syndrome===
*2006 "Advies inzake het ZonMW-Onderzoeksprogramma Chronisch Vermoeidheids Syndroom", ME/CVS Vereniging,
*2006 "E. van de Putte, 'Exploring Chronic Fatigue Syndrome in Adolescents' (proefschrift)", book review, Lees ME 1, December, p42-45
*2007 "Gezondheidsraad, 'Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom'", book review, LeesME 2, May, p44-45
*2007 "Advies aan ZonMw inzake de tweede ronde van het Onderzoeksprogramma CVS", May
*2007 "NICE Guideline", review, Lees ME 3, October, p32-35
*2009 "Chronischevermoeidheidssyndroom: een psychoneuro-immunologisch perspectief", comments, Tijdschrift voor Psychiatrie, October, p786-787
*2010 "Het chronisch vermoeidheidssyndroom. De beoordeling door verzekeringsartsen", included comments, Inspectie Werk en Inkomen, Ministerie van Sociale Zaken en Werkgelegenheid, November
*2012 [http://www.mevereniging.nl/PDF/20120412_CBO_Conceptrichtlijn_CVS_commentaar_MEVereniging.pdf "Commentaar op het concept van de CBO-richtlijn CVS"], ME Vereniging Nederland, 12 April

===Patient advocacy===
*2010 "De ME/CVS Vereniging", LeesME 10, May, p8-10
*2012 "Samenwerkingsovereenkomst Samenwerkingsverband Pijnpatiënten naar één stem", December
*2013 [http://www.mevereniging.nl/PDF/20131015_Manifest.pdf "Een meedenkende patiënt is een goedkope(re) patiënt"], Manifest aan de Tweede Kamer, 15 October
*2015 [http://www.paraduin.nl/artikel-basisinkomen-chronisch-zieken/ "Vrijheid in solidariteit. Een basisinkomen voor chronisch zieken en mensen met een beperking"], Sociaal Bestek, June, p34-36
*2017 [http://www.mevereniging.nl/PDF/20170221_Visiedocument.pdf "De stem van de patiënten en hun organisaties gehoord. Drie pleidooien aan de politiek van ruim 5 miljoen mensen met een aandoening"], PatiëntenPerspectief 2021, 21 February

==Online Presence==
*[https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA DossierME] (YouTube)
*[https://nl.linkedin.com/in/guido-den-broeder-b4b39926 LinkedIn]
*[http://www.paraduin.nl/ Paraduin]

==Learn more==
*[https://ratings.fide.com/card.phtml?event=1000519 FIDE]
*[https://www.imdb.me/guidodenbroeder IMDb]
*[http://nl.wikisage.org/wiki/Guido_den_Broeder Wikisage]

==See also==
* [[Global Advocates for Myalgic Encephalomyelitis]]
* [[ME Vereniging Nederland]]
* [[Stichting ME Research]]

==References==
{{reflist}}

{{DEFAULTSORT:Broeder, Guido den}}
[[Category:Dutch advocates or allies]]
[[Category:Researchers]]
[[Category:People with ME]]

Guido den Broeder

2019-09-16T12:09:47Z

Guido den Broeder:/* Myalgic encephalomyelitis */ link MediaPlanet

[[File:20170811_Guido_den_Broeder.jpg|240px|thumb|right|Photo: Dutch Casting Agency (2017)]]
'''Guido den Broeder''' (Den Haag, 28 February 1957) is a Dutch writer, econometrician, politician and chess player. He is a [[myalgic encephalomyelitis]] patient (since 1987) and advocate. He lives in Rotterdam, the [[Netherlands]].

==Career==
Den Broeder gained international fame with the development of the macro-econometric model AMO-K, which for some 15 years was used to study a number of strategic policy scenarios for The Netherlands.<ref>1985 J.A.M. Heijke, J. de Koning, R.J.M. Maas, G. den Broeder, "A model of the Dutch Labour Market (AMO-K)", De Economist, 133-4</ref><ref>1988 G. den Broeder, "Alternatieve heffingsgrondslagen voor de sociale zekerheid. Micro-, meso- en macro-economische effecten", Nederlands Economisch Instituut / Magnana Mu Publishing & Research</ref> From 1990-1995, he was a member of the Economic Committee of the Dutch political party GroenLinks.<ref>1993 G. den Broeder, "GroenLinks 1995-1998, Financiële vertaling van het ontwerp-verkiezingsprogramma", Economische Commissie GroenLinks, 2 August</ref> He was a representative in Rotterdam from 1994 to 2002.

An accomplished chess player, he gained the title of FIDE Master and became champion of the Rotterdam region on two occasions. He finished second in the Dutch Correspondence Chess championship of 1980/81, and authored a number of tournament books.<ref>1994 J. de Hooge, M. de Zeeuw, H. van Bekkum (eds.), "De weg van Kralingen naar CAP VOLMAC Rotterdam. 1924-1994, 70 jaar van een topclub", Rotterdam: Cap Volmac BV, p195-197</ref><ref>2016 Nederlandse Bond van Correspondentieschakers, "Correspondentieschaken in Nederland. 50 Jaar NBC 1966-2016", Gent: Thinkers Publishing, ISBN 978-90-425100-4-4, p116-119</ref>

On 1 April 2015, as a protest move, he declared his Rotterdam home as part of a micronation, Paraduin. This was after The Netherlands denied him welfare and the Dutch court refused to hear his case leaving him without means to survive.<ref>2014 [http://www.mevereniging.nl/rotterdam-weigert-bijstand-aan-voorzitter-me-vereniging/ "Rotterdam weigert bijstand aan voorzitter ME Vereniging"], news item, ME Vereniging Nederland, 13 July</ref><ref>2015 [http://www.paraduin.nl/2015/07/01/weg-uit-nederland/ "Weg uit Nederland"], news item, Paraduin, 1 July</ref>

Den Broeder was an executive producer of the action thriller ''The Russian Bride'', released in 2019. It features a desparate father going to extreme lengths to find a cure for his son, who suffers from a [[mitochondria]]l disease.<ref>2018 [http://www.paraduin.nl/2018/12/18/the-russian-bride-comes-to-porto/ The Russian Bride comes to Porto], news item, Paraduin, 18 December</ref> He also wrote the sciencefiction/fantasy novel ''Bellerophon'', about a young man with brain damage who has to find his way in a strange world to fulfil a heroic destiny.<ref>2017 Ogidius, "Bellerophon", Paraduin Productions, October</ref>

==Advocacy==
On May 12, 1987, Den Broeder fell ill with myalgic encephalomyelitis, and never recovered. The diagnosis arrived at his house while he was playing a chess tournament in Hungary in 1990, where he succumbed to exhaustion halfway the event.<ref>2009 [http://www.chessgames.com/perl/chessplayer?pid=94920 "The chess games of Guido den Broeder"], comment, Chessgames.com, 19 April</ref> During the years that followed, he tried but failed to receive [[disability benefits]], despite having been fully insured.

In a letter to GroenLinks chairman Ab Harrewijn, 1996, Den Broeder asked for political attention to the plight of ME patients in the Netherlands.<ref>1996 G. den Broeder, letter to Ab Harrewijn, 14 February</ref> A budget of € 2.72 million (6 million gulden) was eventually set aside by Dutch parliament for biomedical research into ME. However, after the Gezondheidsraad produced an advice on [[Chronic Fatigue Syndrome]] (CFS) in 2005, the money was squandered on studies into [[cognitive behavioural therapy]] (CBT) and [[graded exercise therapy]] (GET) for CFS patients.

In 2004 Den Broeder was one of the leaders of a patient revolt against the board of the government-subsidized [[ME/CVS-Stichting Nederland]], which denied ME and CFS patients influence on the foundation's positions and activities. To give patients a voice and counter the foundation's propaganda of CBT/GET, he co-founded the [[ME en CVS Vereniging]] in 2005, later renamed to ME/CVS Vereniging. As a chairmain (two periods) and [[guideline]] representative, he educated patients and doctors about the difference between ME and CFS. He furthermore criticised the publications of the Dutch Health Council and the decisions of the Dutch minister of health.

When in 2011 the [[International Consensus Criteria]] for ME were published and CFS got classified away from ME in the [[ICD10-CM]] (published in 2015), the decision was made to disband the ME/CVS Vereniging. Den Broeder founded the [[ME Vereniging Nederland]], the national patient organization for [[ME]] in the Netherlands. He has served as chairman until this day. Also in 2011, he founded and became president of the [[Stichting ME Research]], a foundation whose purpose is to conduct, promote and interpret research into myalgic encephalomyelitis. He initiated several ongoing projects, including ''Wetenschap voor Patiënten'' ([[Science for Patients]]). Den Broeder's YouTube channel [[DossierME]] shows presentations and interviews from that project.

Den Broeder is a [[basic income]] advocate,<ref>1991 G. den Broeder, A. de Roo, "Basisinkomen - omdat het kan", GroenLinks</ref> and served as a board member of the Vereniging Basisinkomen for 13 years. On several occasions he has suggested that ME patients would profit from the introduction of a basic income, leaving behind the 'unfavorable lottery' that the current system for disability benefits has to offer. Findings by the Stichting ME Research indicate that half of the ME patients in The Netherlands have no or insufficient income.

Together with [[Wendy Boutilier]] and [[John Gabor]], Den Broeder founded the international group [[Global Advocates for Myalgic Encephalomyelitis]] in 2016. GAME supports the application of the International Consensus Criteria for ME.

==Education==
* 1981 Drs in econometrics, Erasmus University Rotterdam

==Interviews & Talks==
*2003 "Van willekeur naar basisinkomen", Attac-lecture, Den Haag, 25 February
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_overhandiging.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], speech, ErkenME, 12 May
*2010 "Ervaringen met behandelingen bij ME/CVS", presentation, Landelijke ME informatiedag, Amersfoort, 8 September
*2011 "Knelpunten in de zorg voor ME-patiënten", presentation, Landelijke ME informatiedag, Driebergen, 12 May
*2013 [https://www.youtube.com/watch?v=T1nSIvR3Bfk Wetenschap voor Patiënten], interview, DossierME, 21 June
*2014 "Preconcept Multidisciplinaire Richtlijn ME", presentation, Landelijke ME informatiedag, Utrecht, 12 May
*2015 "Basisinkomen voor chronisch zieken en mensen met een beperking", presentation, PG Werkt Samen, 30 April
*2016 "Gezondheidsraad - hoe anders", presentation, Landelijke ME informatiedag, Den Haag, 12 May
*2016 [https://soundcloud.com/gl8-media/interview-guido-den-broeder-in-gezond-en-wel Gezond en Wel], interview, GL8 media, 18 November
*2018 [https://www.rtlnieuws.nl/lifestyle/gezondheid/artikel/4015001/me-patient-guido-kritisch-over-erkenning-ziekte-nieuwe "ME-patiënt Guido kritisch over erkenning ziekte: 'Nieuwe criteria onbekend'"], interview, RTL Nieuws, 19 March
*2019 [https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"], presentation, Commissie VWS, Tweede Kamer, 27 March

==Publications==
===Myalgic encephalomyelitis===
*2006 "Zorgindicatie", Lees ME 1, December, p50-51
*2007 "Richtlijnen en Knelpunten voor ME/CVS", Lees ME 2, May, p10-15
*2007 "De ontwikkeling van een Multidisciplinaire Richtlijn ME/CVS", Lees ME 3, October, p12-14
*2008 "Richtlijn in beslissend stadium", Lees ME 4, March, p11-14
*2008 "Richtlijn loopt vast, kerngroep vervangen", Lees ME 5, July, p11
*2008 "Testen op ME/CVS. Deel 1: de klachten", Lees ME 5, July, p37-41
*2008 "Testen op ME/CVS. Deel 2: de ziekte", Lees ME 6, December, p28-31
*2009 "Onderzoek NIVEL legt tekortschieten zorg bloot", Lees ME 7, April, p16-19
*2009 [http://www.mevereniging.nl/PDF/20090512_ErkenME_petitie.pdf "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer"], ErkenME, 12 May
*2009 "Smurf!", LeesME 9, December, p13-15
*2010 "De boom valt en niemand luistert", column, Lees ME 11, October
*2011 "Keuringspraktijk UWV. Inspectie Werk en Inkomen: bandbreedte in claimbeoordeling", Lees ME 12, February, p11-13
*2014 [http://www.meresearch.nl/PDF/20140208_STMER_DEPME_Overzicht_2012-2013.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2013"], Stichting ME Research, 8 February
*2014 [http://www.mevereniging.nl/PDF/20140329_MEVN_StandvanZaken.pdf "De postvirale hersenaandoening Myalgische Encefalomyelitis. Stand van zaken 2014"], ME Vereniging Nederland, 29 March
*2014 "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May
*2015 "NIH: 'Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome' (draft)", comments, ME Vereniging Nederland, 16 January
*2015 [http://www.mevereniging.nl/PDF/20150127_MEVN_TipsNieuwePatienten.pdf "Tips voor nieuwe ME-patiënten"], ME Vereniging Nederland, 27 January
*2015 "Antwoord op vragen van de Gezondheidsraad", letter, ME Vereniging Nederland, 14 August
*2015 [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
*2015 [http://www.mijn-lichaam.com/organen-en-weefsel/brein/myalgische-encefalomyelitis-me "Myalgische Encephalomyelitis (ME)"], Mijn Lichaam, MediaPlanet, 16 September
*2018 [https://www.seniorenwijzer.eu/gezondheidsraad-zet-me-patienten-op-zijspoor/ "Gezondheidsraad zet ME-patiënten op zijspoor"], SeniorenWijzer, Spring
*2019 [https://www.seniorenwijzer.eu/myalgische-encefalomyelitis-postvirale-hersenziekte "Blijft de ziekte ME een ondergeschoven kindje?"], SeniorenWijzer, Summer, p24-25

===Chronic Fatigue Syndrome===
*2006 "Advies inzake het ZonMW-Onderzoeksprogramma Chronisch Vermoeidheids Syndroom", ME/CVS Vereniging,
*2006 "E. van de Putte, 'Exploring Chronic Fatigue Syndrome in Adolescents' (proefschrift)", book review, Lees ME 1, December, p42-45
*2007 "Gezondheidsraad, 'Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom'", book review, LeesME 2, May, p44-45
*2007 "Advies aan ZonMw inzake de tweede ronde van het Onderzoeksprogramma CVS", May
*2007 "NICE Guideline", review, Lees ME 3, October, p32-35
*2009 "Chronischevermoeidheidssyndroom: een psychoneuro-immunologisch perspectief", comments, Tijdschrift voor Psychiatrie, October, p786-787
*2010 "Het chronisch vermoeidheidssyndroom. De beoordeling door verzekeringsartsen", included comments, Inspectie Werk en Inkomen, Ministerie van Sociale Zaken en Werkgelegenheid, November
*2012 [http://www.mevereniging.nl/PDF/20120412_CBO_Conceptrichtlijn_CVS_commentaar_MEVereniging.pdf "Commentaar op het concept van de CBO-richtlijn CVS"], ME Vereniging Nederland, 12 April

===Patient advocacy===
*2010 "De ME/CVS Vereniging", LeesME 10, May, p8-10
*2012 "Samenwerkingsovereenkomst Samenwerkingsverband Pijnpatiënten naar één stem", December
*2013 [http://www.mevereniging.nl/PDF/20131015_Manifest.pdf "Een meedenkende patiënt is een goedkope(re) patiënt"], Manifest aan de Tweede Kamer, 15 October
*2015 [http://www.paraduin.nl/artikel-basisinkomen-chronisch-zieken/ "Vrijheid in solidariteit. Een basisinkomen voor chronisch zieken en mensen met een beperking"], Sociaal Bestek, June, p34-36
*2017 [http://www.mevereniging.nl/PDF/20170221_Visiedocument.pdf "De stem van de patiënten en hun organisaties gehoord. Drie pleidooien aan de politiek van ruim 5 miljoen mensen met een aandoening"], PatiëntenPerspectief 2021, 21 February

==Online Presence==
*[https://www.youtube.com/channel/UCcLGoYlJgzJTVeHmGwhf_XA DossierME] (YouTube)
*[https://nl.linkedin.com/in/guido-den-broeder-b4b39926 LinkedIn]
*[http://www.paraduin.nl/ Paraduin]

==Learn more==
*[https://ratings.fide.com/card.phtml?event=1000519 FIDE]
*[https://www.imdb.me/guidodenbroeder IMDb]
*[http://nl.wikisage.org/wiki/Guido_den_Broeder Wikisage]

==See also==
* [[Global Advocates for Myalgic Encephalomyelitis]]
* [[ME Vereniging Nederland]]
* [[Stichting ME Research]]

==References==
{{reflist}}

{{DEFAULTSORT:Broeder, Guido den}}
[[Category:Dutch advocates or allies]]
[[Category:Researchers]]
[[Category:People with ME]]

ME Vereniging Nederland

2019-09-16T12:04:38Z

Guido den Broeder:/* Notable people */ ref no revealing

ME Vereniging Nederland

2019-09-16T11:50:08Z

Guido den Broeder:lede: brain disorder

ME Vereniging Nederland

2019-09-16T11:43:36Z

Guido den Broeder:/* History */ founding, members

ME Vereniging Nederland

2019-09-16T11:35:09Z

Guido den Broeder:/* History */ joined the DBC