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Link to the questionnaire (docx file) here.

Science Media Centre's (UK) take on this: Dr Michael Zandi, Consultant Neurologist, UCL, said: “The authors present a study looking at factors that go hand in hand with memory and other cognitive symptoms after Covid, and show that these symptoms are common and can predict the development of...

Apologies, off topic but find it hard to cope with the fact that a number of forum members much smarter than I and who started or were engaged in related discussions have died or are too sick now so can't engage in a discussion anymore. Perhaps we could find a way to manage the discussion in a...

Could you give examples? I don't get why you need psychometric measurement tools for monitoring patients with ME/CFS. I think a smart symptoms/ activity diary could be helpful if doesn't need too much time to fill in? Also with regard to wearables, I agree they have to be validated / adjusted...

Maybe a difference is that talking about RA symptom and coping with the disease and treatments is not as 'complex' as talking about ME/CFS symptoms and coping. Talking about PEM is difficult as is talking about coping/ pacing -- just recalling and giving an account of all the things that...

Related to the discussion on developing assessment tools for monitoring disease activity/ impact/ disability -- Why is the term 'psychometric' used for scales that measure also physical symptoms / symptom burden / disability? Is a simple visual analog pain rating scale or a symptom diary also...

Apologies, only read the abstract and thought the paper's main finding was that not all reductions in functioning relevant to people with ME/CFS are covered by the International Classification of Functioning, Disability and Health (ICF) [edit: and other scales/ questionnaires commonly used by...

Hi @sarahtyson & welcome to the forum. Great to have you -- as an expert who's also a person with ME/CFS and a carer -- on the forum engaging with this important discussion. Not able to add much now but you might be interested in previous discussions on the forum -- we have several threads on...

This paper posted on a thread of its own might be a useful addition to the discussion (not related to ME/CFS) ?

Recently was reminded that there's a translation of Jo's testimony into German. Translation was commissioned by the German charity Fatigatio -- here's the link: https://www.fatigatio.de/fileadmin/Projects/07_fatigatio/user_upload/PDFs/PDFs_Sonstige/NICE_Kommentar_Prof_Edwards.pdf Thank you...

Don't think it was redundant. Also, still hope I or anyone else will be able someday to a) find people who could (help) translate it into German, b) to get -- with the help of your testimony and the paper by Tack et al -- other patient communities / umbrella organizations interested in the...

Anil van der Zee on Twitter: "A short blog post for M.E. Awareness Month for the #MillionsMissing Missing." https://t.co/fYldgZODZI

Apologies for cross-posting from another thread: This year's Conference of the European Association of Psychosomatic Medicine (EAPM) in June 2023 in Wrocław (Poland) will dedicate a 'symposium' to the new Guideline: https://www.eapm-conference.org/index.php/program/main-program FRIDAY 16 |...

Thanks for posting -- did not see this one: FRIDAY 16 | 10:15-11:30 | KAMIENICA ROOM SYMPOSIUM CFS/ME: CONTROVERSY AND COMMUNICATION FOLLOWING THE 2022 UK NICE GUIDELINES CHAIR Per Fink. Research Clinic for Functional disorders and Psychosomatics, Aarhus University Hospital. Denmark What is...

"The EURONET-SOMA networks meets regularly twice a year: a brief meeting takes place during the annual conference of the European Association of Psychosomatic Medicine (EAPM). This meeting is open to all attendees of the EAPM conference. The second, more extensive meeting takes place in autumn...

A recent reference to the PACE trial in a study protocol (*) by one of the project teams of the large SOMA.CROSS research group at the UKE Hamburg: "Integrated biopsychosocial research in patients with multiple sclerosis (MS) and poststroke found a fatigue-enhancing cycle of avoidance behaviour...

Have to resume my forum break now but I think it would be worthwhile to post the protocols of this research group's individual projects too. So if anyone felt up to it, they are here. Couldn't find the protocol for the Long Covid sub-project though. I think a critique of that project is...

This is the 'umbrella' protocol for the individual projects of SOMACROSS which is 'inspired' by EURONET-SOMA see this thread. Biomedical clinician scientists are also on that ship as principal investigators, e.g. in the research groups on irritable bowel syndrome and ulcerative colitis...

Direct link to the text (html) here. Website: https://www.parlament.gv.at/gegenstand/XXVII/I/2009 -> "Dokumente" -> "Entschließungstext"

Scientific framework and overarching protocol of the interdisciplinary SOMACROSS research unit (RU 5211) BMJ Open 2022;12:e057596. doi: 10.1136/bmjopen-2021-057596 Posted on an own thread.