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Got a reply from the DG. They won't publish their comment prior to the publication by the IQWiG but sent me some hints on their main points. That's very helpful and much appreciated. I will need to focus now on putting a comment together. So apologies if I won't provide further information...

Deutsche Gesellschaft für ME/CFS (22.07.2021) : Open letter to neurological professional associations July 22nd is World Brain Day. It was created by the World Federation of Neurology in 2014 to bring more attention to neurological diseases. The German Society for ME / CFS took the World Brain...

Good ideas -- thanks @Michiel Tack. Just to clarify: The IQWiG invited German patient organizations to a meeting at the begining of the project and there will be more meetings on some occasions. See here...

I hope they will either publish the comment on their website on the weekend or if they don't want to publish it until the IQWiG will publish it, will send me a copy in confidentiality. To clarify: I made all my posts here just as a simple forum member and private person, assuming that for any...

"The German ME/CFS Society [Deutsche Gesellschaft für ME/CFS -- DG ME/CFS] have submitted a 25-page comment on the reporting plan of the @iqwig . The comments will be published by IQWiG." https://twitter.com/dg_mecfs/status/1423564303265828864 I asked the DG ME/CFS this afternoon if I could...

It has to be in German language and anonymous comments aren't allowed. Edit: Further details here: (google translate) https://translate.google.com/translate?sl=auto&tl=en&u=https://www.iqwig.de/sich-einbringen/stellung-nehmen/ I'll attach the template (deepl translate) for futher details...

By application, but the period closed already on July 5th. See: https://twitter.com/iqwig/status/1412024767524245507 More info on the project website: https://www.iqwig.de/projekte/n21-01.html

Further comments will also be possible on the preliminary report -- but before the publication of the preliminary report (draft) there will be a "user testing". I haven't understood yet how people for the "user testing" will be elected. (Edit: typos/ grammar)

Good wishes for for everyone who will present, talk and otherwise participate on the webinar. Sorry to be not able to attend today but looking forward to the transcript.

I will try to post some thoughts on the report later. I have not the expertise to understand most methodological details though. Any thoughts, help, comments would be highly appreciated. Apologies for the short notice – have been struggling with diverse issues lately and still do, but I hope I...

deepl translate: "Since the present research question is an evidence mapping, no statements on benefits and harms [of therapeutic programs] are made. However, if evidence of sufficient quality emerges, a selection of 2 therapeutic programs will be made to evaluate if they are useful (see...

So let's demand to also include people who had thought they have recovered but did relapse. Sorry for being cynical - but that's what I was trying to point to: the spectrum of people who have recovered or thought they have recovered and the diversity of reasons (including religious/spiritual...

Also referenced in: Struthers, Caroline (2021), It is not only drugs and devices that can harm, Healthwatch UK Newsletter 114, https://www.healthwatch-uk.org/publications/newsletter/newsletter-114/221-114-cbt-get.html Forum thread...

We could propose to also appoint misdiagnosed persons who are aware of their misdiagnosis. I agree this move seems to be bad news (and ridiculous), but trying to think of the spectrum of recovered persons I'm aware of, how about Leonard Jason? (Not sure if he sees himself as fully recovered...

Not sure whether Fluge and Mella actually used actigraphy? - but anyway, isn't the point here that the relevant Rituxmab trial was properly controlled beacuse it was a blinded trial? (Apologies for just popping in -- not able to catch up ATM.)

Not sure about the evidence for your observation about corticosteroids. In my case, high dose cortisone (which was prescribed due to another suspected disease) gave relieve for most symptoms except it didn't prevent PEM. I could do all kind of activity much more easily and faster but I needed...

Just was reminded of this thread by several other recent posts. People repeatedly report that their symptoms are relieved a bit by antihistamine medications. I wonder if the role of histamine / histamine receptors and antagonists could be relevant in ME? Especially as histamine also seems to...

Science Media Centre London / Briefing, 18.07.2021: 19.6 million announced for new research into diagnosis and treatment of long COVID The National Institute for Health Research (NIHR) is awarding almost £20 million to 15 research studies across Britain to improve the understanding of long...

(Edit: I just like the quote, haven't read the article yet.) Tweet by the AMA Journal of Ethics: https://twitter.com/JournalofEthics/status/1412441212494229511 "The PACE study has since been roundly critiqued by patients, academics, and experts alike for serious methodological flaws."...

German documentary about living with ME/CFS on French-German public service TV channel, 10.07.2021, 22:40 (also available on the website during the day) Le syndrome de fatigue chronique - L’EM/SFC, une maladie trop peu (re)connue - Regarder le documentaire complet | ARTE "Des millions de...