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My copy of the book arrived today. It looks very professionally produced and is over 300 pages. Clearly intended as a textbook for professionals, not a simple guide for patients. It's heavy and the print is quite small, so it will take me ages to read it in small stages. I probably should have...

For those in the UK, the times are from 3pm to 7pm on Friday afternoon.

Thanks for the update, @MBailey. Is a subject access request like an FOI request?

ME Association responds to disappointing reply from Oxford NHS Trust about ‘inaccurate’ and ‘offensive’ job advert August 21, 2023 The reply includes: The claim seems to be that it's generic content not specific for ME/CFS. There's an excellent response from Dr Shepherd, which includes the...

Getting back to the subject of this thread, the research was funded by the ME Association Ramsay Research Fund. They have posted it on their website under the heading: Research: Potential abnormalities found in home-based testing of everyday activities in ME/CFS with the quote: “Our home-based...

Some posts about a job ad have been moved to the thread about the Oxford clinic: United Kingdom: Oxford Health NHS Foundation Trust; Oxford University Hospitals ME/CFS service

I would add to that list: Psychological therapy can cause immense harm even when well intended. Psychiatrists invented the whole field of psychosomatic medicine that is riven with: - patient blaming, - misdiagnosis and missed diagnoses, - misinterpretation of physically caused symptoms and...

I agree. It seems to be the diagnosis intended to single out people who the clinician thinks are exaggerating their symptoms, that the degree of suffering can't possibly be caused by whatever disease they have. An excuse to bundle people off to psychologists for 'therapy' so they can be taught...

What about muscle fatiguability? I do stuff using my arms and/or legs that is neither strength training nor aerobic activity, like typing, washing dishes, walking short distances in my home etc. It always leaves my arms/legs in a lot of pain and feeling weaker. I can't attempt to build strength...

So now we have the battle of the e-learning schemes. Another instance where the out of date Cochrane reviews are being misused.

I think I would have the same effect. I don't intent to test myself to exhaustion as I don't want the PEM that follows. Isn't this what the 2 day CPET studies show?

Esteem has to be earned, not demanded.

I think the key thing in terms of getting good advice about rest and prolonged convalescence is that post viral conditions are recognised as real, as used to happen with glandular fever (mono), flu, pneumonia etc. It was accepted back in the 1970's when I had GF that I rest as much as needed...

Some posts have been moved to a members only thread here.

I think it's probably a bit of both - not necessarily diagnosed very carefully with a full understanding of PEM, and natural recovery. Given that they only used the short version of the DePaul Symptom questionnaire to diagnose PEM, I wouldn't entirely trust the diagnosis...

Some posts have been moved to In memory of Brandon Gilles

An idea someone had that was dropped when others disagreed. See this therad. Nothing to do with Maureen Hanson's article.

Maybe the NIH National Library of Medicine information is more reliable that the Wikipedia one: WASF3 WASP family member 3 [ Homo sapiens (human) ] Gene ID: 10810, updated on 21-Jun-2023

Hmm. Given that the phrase PEM is commonly used, they'd hardly be unaware that's what it's called in English.

I have just read it and am surprised by it too. It seems from all the evidence we've seen that lots of different infections are triggering a chronic disabling condition where patients meet the IOM and other diagnostic critieria. Surely they all therefore, by definition have ME/CFS. Diagnosis is...