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The most commonly quoted prevalence figure for severe ME/CFS is 25%. This includes very severe ME/CFS which is estimated to be a much smaller proportion. We have quite a few members here with very severe ME/CFS, by which I mean bedridden or almost entirely bedridden, (edit: plus a range of...

This shouldn't even need to be mentioned in a paper about psychiatry, given that ME/CFS is not a psychiatric disorder. By including it, they imply ME/CFS is the business of psychiatry, and the problem is that about objectifying/subjectifying. The problem is they should never be seeing us in the...

Yes, that struck me too. I thought the whole point of studying repeated hand grips in ME/CFS was to study fatigability. Otherwise, what's the point?

Good points, I agree qualifying in this way is very helpful. Yes, thanks for starting the thread.

I hope in some sort of recompense to those she has harmed, Mendenhall will have the guts to publish in full Wessely's 17 page review of her article.

god save us from people with good intentions. I think the Long Covid Advocacy article is excellent in revealing huge problems with the book, but too kind in attributing good intentions and allyship to Mendenhall. Why commend at all someone who has misused the suffering of sick people to set up...

They are all good, and vary in suitability for different contexts, I think.

I think this situation illustrates very well the huge dangers of anthropologists assuming they understand and have value to add to complicated medical situations where doctors don't agree. It's all too easy to imagine all views hold equal validity when they clearly don't to anyone with any...

I think whatever we say in general terms about wanting help with anything will be in danger of being answered by the likes of BACME, the NHS and all the quacks in the world as an opportunity for them to say they are helping, and to promote their views. I can even imagine the likes of Sharpe and...

ME/CFS devastates millions. There is no treatment. Many sufferers get no support or medical care. Help us to change this.

A useful exploration of how short messaging can work, but I think we are in danger of falling into the trap of brevity over clarity. Most people won't have a clue what this message in all its iterations is saying about what we are asking for. We know the meaning behind it, but the average...

While I agree that some S4ME members, scientists, doctors, and others sufficiently aware of the pitfalls, may be able to make positive use of some AI, I think the majority of people can get very badly misled. But I think this thread topic is not really about whether AI adds value or makes...

If we don't add anything about needing support, the message that comes across is that it's asking for research funding. I think we need something about pwME suffering medical neglect.

Really good ideas. I'm unclear about the purpose. Who do you envisage saying this, and to whom?

I see no reason why AI will be any better on these recommendations. Who knows what nonsense it might generate, depending on thte quesitons the person asks. And I can do without the pseudo empathy from a machine.

I have read back over this thread and am more bemused at what the problem raised is than ever. I think it would be helpful if the opening post could be clarified, as it makes several statements I either don't understand or see no evidence to confirm. To be specific: In what way is...

To me pseudo-anything is giving the outward or superficial appearance of being the real thing in order, deliberately or through ignorance, to deceive. So for example authors or people on social media can choose a pseudonym in order not to reveal their real name for whatever personal reasons...

@hallmarkOvME, your second paragraph is meaningless to me as I have not read the work of the people listed. Can you give us a concise summary of the key points you are making in plain English?

I'm surprised so many of the suggestions on this thread are non biomedical. I took a look at the information about PRIME: https://www.actionforme.org.uk/new-research-project-prime/ This tells me that the seminars would be best to focus on biomedical topics that might draw in researchers who...

So basically useless.