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.
 * Please sign your comments. Guido den Broeder (talk) 07:04, September 14, 2019 (EDT)