Talk:ME/cvs Vereniging

Speculation about SEID is not appropriate here -- notjusttired (talk) 21:27, September 12, 2019 (EDT)

If you can't Cite it, you can't say it. If someone adds a "citation needed" then you cannot simply remove that without adding the citation needed. This page should be a basic summary. If their are well-referenced criticisms then those would go under a subheading, but personal criticisms that are not notable publications do not meet the Science guidelines. I have also referenced the exact page number of the report the statistics are from. If you wish to change this to "self-reported" diagnosis of ME, CFS etc that's fine. But claiming that those who reported ME have SEID instead of ME (rather than both illnesses) is not supported by the evidence. Bear in mind that almost all ME-ICC patients will meet SEID criteria. The report shows exactly the question asked in the survey about diagnosis (question 9). notjusttired (talk) 21:27, September 12, 2019 (EDT)

Only 25% of ME patients satisfy SEID criteria. More importantly, only 2% of all SEID patients have ME.

This is not Wikipedia. First priority is to get it right, the sources will follow in due time if you stop obstructing my progress. I'm going to sleep now. Do not edit the lemma. Guido den Broeder (talk) 21:29, September 12, 2019 (EDT)

You are right that it's not Wikipedia since your editing was not tolerated there either. We do not add unreferenced edits that are controversial - if you can't prove it (yet) it shouldn't be there. I have no obligation to not edit (although I suspect both of us need sleep so good night). I think it best to discuss the controversial stuff here and get the references right and content agreed before it goes on the actual page. Alarming to hear SEID has been adopted in the Netherlands. I thought they followed the ICD which doesn't include it. Please see MEpedia:Editorial guidelines and MEpedia:Science before editing further. I look forward to seeing your references. I imagine they recent newsletters to shed light on it. notjusttired (talk) 21:43, September 12, 2019 (EDT)

Funny how nearly everyone on Wikipedia accepted my edits a decade ago even though they didn't tolerate them according to you. But now I know where you're coming from. You're one of the idiots that thrashed the CFS page there, after I had improved it to B status where I was the only one actually adding sources. Wikipedia is the odd one though, in the real world we value expertise. Nothing in the editorial guidelines supports your statement but they do say that Wikipedia is unreliable. Guido den Broeder (talk) 05:35, September 13, 2019 (EDT)

Understand that SEID has NOT been adopted in The Netherlands. The Health Council took the criteria but incorrectly applied them to 'ME/CFS'. Their advice, however, has been rejected by the medical establishment as well as by the behavioural therapists. The only ones to accept the advice are the government-funded ME/CVS-Stichting, and the ME/cvs-Vereniging and Stichting ME en Arbeidsongeschiktheid that co-operate with the ME/CVS-Stichting. How do we know this? They had a shared representative on the committtee that produced and signed the advice. Guido den Broeder (talk) 06:12, September 13, 2019 (EDT)

User:Guido den Broeder Leave out the insults. I have never actually edited the CFS Wikipedia page but given Wikipedia's science guidelines, which are very different to MEpedia's, I imagine it was a nightmare.

Let's talk about a way forward for with the edits you have made to this page that has been reverted. notjusttired (talk) 13:12, September 13, 2019 (EDT)

Evidence of SEID support

User:Guido den Broeder tagging you as you asked. A 1 hour 26 min video of a meeting is not able to support your claim of SEID support, you need to identity from the time from and to the this was said, and a clear quote. I have left the video there to give you time to work out the exact times and quote, but another reference is needed. Surely a change of position should have been communicated to members? Alternatively a newsletter written by the organization might lend support. The fact the entire website does not describe or recommend SEID criteria, but does describe ME-ICC and CFS criteria shows that their position is either against SEID or neutral. They have made clear claims that they are against CVS (CFS). The organization has not changed its name to indicate support for SEID which is another factor. Their patient report assessing patient diagnoses against SEID criteria didn't recommend SEID, and most likely was done so that the Dutch Health Council would accept the results. A ME only group could have done the same, surveying only members with ME who also had SEID or comparing with ME without SEID. Much of the history is unsourced at this point. notjusttired (talk) 17:53, September 13, 2019 (EDT)

From your post it is evident that you don't have the slightest clue as to what these terms even mean. You should not edit this wiki, period. Guido den Broeder (talk) 18:59, September 13, 2019 (EDT)

Please don't remove citation requests without discussion first - they are there for a reason. This isn't a personal blog where opinion or hearsay acceptable content. Thanks. Malcx 22:59, September 13, 2019 (EDT)

I agree with the comments from other Editors. MEpedia should focus on facts and use a neutral tone. I very much got the impression that the current text is trying to put them into a negative light because they haven't rejected the SEID-criteria. Whether that's a valid critique doesn't really matter, MEpedia just isn't the right place to settle discussion or feud. There's a recent document from 28/05/2019 where the ME/CVS Vereniging explains her standpoints (https://www.me-cvsvereniging.nl/sites/default/files/documenten/standpunten%20MEcvs%20Vereniging%20mei%202019.pdf). That might be a more useful source.

Thanks Sisyphus, good source for same. The text contains a great many errors but their position is clear: ME and CFS are the same illness despite having totally different definitions, and SEID is the criteria. Quote: "Wij vinden de IOM criteria geschikt voor het stellen van de diagnose" ("We find the IOM criteria suitable for making the diagnosis"). Please sign your comments. Guido den Broeder (talk) 07:04, September 14, 2019 (EDT)

Do understand that while we may think otherwise, to this association accepting SEID is a positive thing, and we would not do them justice by saying something else. They are not our enemies, they're just fighting for a different patient group the best way they think they can. Guido den Broeder (talk) 07:15, September 14, 2019 (EDT)

Repeating in case you missed this last time - Please don't remove citation requests without discussion first - they are there for a reason. This isn't a personal blog where opinion or hearsay are acceptable content. Thanks. Malcx 10:45, September 14, 2019 (EDT)

I'm not looking at your edits, just treating you as the vandal that you are and reverting everything. Stop harassing ME patients. This is not Wikipedia. Goodbye. Guido den Broeder (talk) 11:02, September 14, 2019 (EDT)

Exactly this is not wikipedia and aims for higher standards. I will continue to undo vandalism unless there is a valid reason for not needing citations on _opinions_. It is not meant as harassment or to cause you issues, but you cannot just overrule others without discussion or adherence to the guidelines. Malcx 11:12, September 14, 2019 (EDT)

There is no such guideline for non-science articles. Go away, we don't want you here. Guido den Broeder (talk) 12:50, September 14, 2019 (EDT)

The view above doesn't represent me. I hope to see you more active on MEpedia. Njt (talk) 09:13, September 23, 2019 (EDT)

ME en CVS Vereniging: History and disputes

Archiving information here. ME en CVS Vereniging was known on it's own website as ME/CVS Vereniging for years before the official name change.link from Jul 2011 The website and charity commission number can be confirmed ME cvs Vereniging.pdf here and here, there is no evidence of a split into two organizations as confusingly suggested elsewhere. Website archives state Guido den Broeder resigned as board member in June 2011 and called an unauthorized meeting at his home in Oct 2011 1 and the actual board meeting took place a few days later in Oct 2011,AGM 2011. No mention in AGM of voting for a name change, but a vote to accept the resignation of Den Broeder or if not to dismiss him. I don't see this as relevant to cover. We haven't covered historical board changes for other charities. Some of this is disputed by ME Vereniging - 1 - referring to the earlier meeting and him still being chairman in Oct 2011. Den Broader stated the desire to cancel ME CVS Vereniging and replace with ME Vereniging. Clearly ME/CVS Vereniging has continued. ME/CVS Vereniging had a previous dispute in 2005 in which legal action was taken by members and it emerged it has not been legally registered, I also don't think this needs to be covered. Njt (talk) 09:13, September 23, 2019 (EDT)

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

International Classification of Diseases (ICD) - A system of medical diagnostic codes, created by the World Health Organization (WHO), to classify diseases and other health related conditions for the purpose of international diagnostic consistency. By having common diagnostic codes around the world, health researchers are better able to quantify and track disease burdens. The most current version is called ICD-11. (Learn more: www.who.int)

See International Classification of Diseases.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See National Academy of Medicine.