Search results

Is this connected with the Rosetta Stone study led by Danny Altmann?

The clinicians survey is very odd. I have no idea what useful information it will provide if any.

I attempted to fill in the patients' survey. I found it accessible in the sense of being short and free to skip questions, and not too much to read, but I found it hard to think what they were getting at in some of the questions, so I would do one, then realise my answer was actually more...

Clinicians survey Starts with some demographics, then these questions, some with open boxes to fill in:

The survey is quite short and mostly boxes to fill in in your own words. It starts with some demographic questions - ethnicity, age, gender, how long ill. The rest are mostly boxes to fill in if you want to. ___________________

2026 posts have been moved to a new thread and this thread is now closed. UK: Disability benefits (UC, ESA and PIP) - news and updates 2026

I don't think Dakota has invalidated anybody's suffering. I read their posts as clearly recognising the problems with the book while also sharing their current situation and how that feels.

That's very understandable. When I think of all the horrors in the world, I sometimes wonder why I'm cross about what some stupid ignorant person has written in a book. You are in the midst of such a threatening situation, I can only imagine how outraged and terrified you and the people around...

I have been following developments from the UK and seen posts on Bluesky from you and others in MN. It's horrifying. I think I saw something about #MEAction USA commenting. I hope you're coping OK. I'm sure others all over the world are with you in sympathy.

Who needs AI when you have real people to produce this kind of slop. Thanks @hibiscuswahine for your analysis of this grifter.

I agree POTS does seem to be more recognised in the NHS than the other 2 mentioned. I think this whole subject area is fraught with misunderstandings and it is all to easy for any of us to say things in ways that can be misunderstood or differently interpreted by others. Forum discussions...

It could be interesting to do a genetic study on families with some parents, siblings and first cousins with ME/CFS and some without. A confounding factor might be that the healthy ones can only be classified as not yet having ME/CFS, not that they will never get it. The genome is so huge...

I'm sorry you have not been listened to or believed by doctors, @lelelemonade. Many of us here share your experience, including me. I'm not sure it's solely down to misogyny, since many of the men among us have suffered similarly, and many of the clinicians that treat us so badly are female. I...

Is there any other condition where severely sick people are allowed to be neglected and left to die as a matter of deliberate policy?

What an appalling waste of time. Still nothing about severe and very severe ME/CFS. I wonder whether there is any other condition where the sickest are ignored completely by the NHS while they fiddle around with endless committees reinventing inappropriate rehab programs.

Thanks, @dave30th

Thanks for providing your perspective, @dave30th. I am horrified that anyone thinks it's appropriate to publish a book with misinformation in it forced on the author by bullying and legal threats. The only honest and academically sound options should surely have been either to scrap the...

I've just read this article. It's long and quotes all sorts of people's theories. It starts quite well suggesting what I would call a counselling approach to therapy where listening and understanding are central. And lots about the importance of not psychologising physical illnesses. But it...

I recall from previous work by this team they had an odd way of defining severe, as being those with PEM. It would be worth checking their previous publications on this study before drawing any conclusions from the abstract.

Do we have a thread on the article this letter is responding to? It's a very good letter, succincty making a powerful case.