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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...

Documentary about living with ME/CFS on French-German public service TV channel ARTE, 10.07.2021, 22:00 (also available on the website during the day) Die rätselhafte Krankheit - Leben mit ME/CFS - Die ganze Doku | ARTE...

There are many extremely weird things about this paper, but these two aspects, put together, to me are the most astonishing -- and a bit difficult to digest. I think it's a big success that the paper apparently was not accepted by any of the journals where Crawley usually gets her papers...

No doubt that Fatigue is an important journal for ME research that publishes many highly valuable papers. Also, I appreciate that the journal is a means of exchange and discussion for all kind of topics and people involved with research on ME in general as well as on fatigue in ME and other...

To be fair, pacing I think is behavior and it would be good to see it [edit] more rigorously studied as a means of coping. However, Fred Friedberg gives a workshop together with Leonard Jason on: "Behavioral Assessment and Treatment of ME/CFS and Fibromyalgia"...

Probably due to your browser settings that don't let your browser show embedded social media posts? Here's the link: https://www.facebook.com/whitneydafoe/photos/a.126919172179117/349983023206063/?type=3

Not sure how the editorial is related to the two studies announced here: https://reporter.nih.gov/search/MFkYFqJYG0-YuVKog5mE5Q/projects Some details could be relevant for discussions on research methodology and hint to caveats that apply for ME research in particular. Not able to explain now...

Done. Thank you MEMarge, and everyone else involved with this.

Just have submitted a suggestion. Was too brain fogged to asses if it made sense. A suggestion to differentiate and precisely specify diverse forms of fatigue, based on detailed symptoms monitoring (*) Fatigue is seen as one of the most characteristic symptoms of ME/CFS. While the focus on...

Trial By Error: Journal Corrects “Highlights” Section of Professor White’s GETSET Follow-Up Paper [2nd part about this thread's paper] https://www.virology.ws/2021/06/30/trial-by-error-journal-corrects-highlights-section-of-professor-whites-getset-follow-up-paper/ [...] "Besides the issue of...

Trial By Error: Journal Corrects “Highlights” Section of Professor White’s GETSET Follow-Up Paper https://www.virology.ws/2021/06/30/trial-by-error-journal-corrects-highlights-section-of-professor-whites-getset-follow-up-paper/

Thank you for your reply @PhysiosforME . And apologies for my unbalanced comment. I appreciate your work and the impact of it. My congratulations to your anniversary should have preceded my hint to my concerns about the details on which publisher will sell your book. I just was really shocked...

About the publisher: "Leading publisher in acupuncture, Chinese medicine, yoga & yoga therapy, complementary health and more." o_O Publisher's website: https://uk.singingdragon.com/

Edit: That seems somehow related to a "series looking at chronic pain and long Covid" by Linda Geddes "Sufferers of chronic pain have long been told it’s all in their head. We now know that’s wrong"...