MEpedia talk:Science guidelines

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......"

--Meaction (talk) 13:41, 21 November 2015 (PST)

Volunteer Slack?
Under the "Less is more" subsection, it says "go to the Volunteer Slack". What is a "Volunteer Slack"??? Pyrrhus (talk) 21:31, 14 March 2019 (EDT)
 * 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! Canele (talk) 19:29, 19 March 2019 (EDT)
 * Thank you so much 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! ;)
 * 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 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! 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?
 * Pyrrhus (talk) 16:02, 29 March 2019 (EDT)
 * Oh, thanks so much 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), 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.) 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. notjusttired (talk) 18:42, 29 March 2019 (EDT)
 * Thanks 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? 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 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. 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:") Pyrrhus (talk) 20:43, 18 March 2019 (EDT)
 * I'm for it! (Again!) Canele (talk) 19:30, 19 March 2019 (EDT)
 * Done!
 * Pyrrhus (talk) 16:04, 29 March 2019 (EDT)

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.) 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.
 * 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. 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.JaimeS
 * Ahh ok, thanks 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. Canele (talk) 19:30, 11 April 2019 (EDT)
 * Great, Canele! Thanks for that disambiguation, good looking out. 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. 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! 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).JaimeS

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.) 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. 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). Canele (talk) 14:04, 16 April 2019 (EDT)
 * I like that phrase: “wikignoming”. That’s my word of the day!
 * 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. 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.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). 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. 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. 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.) 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 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. 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 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 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. 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". 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 revising to "neutral" because while editors should definitely describe findings neutrally, that's covered in the 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! 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 notjusttired (talk) 16:38, 22 April 2019 (EDT)
 * I put it in as equivocal very deliberately. Let's keep that word. 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 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.
 * Pyrrhus (talk) 14:28, 3 May 2019 (EDT)

"blocks of information" -- 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."?