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A few years ago after the NICE 2021 ME/CFS guideline was published, I thought there was more of a trend for ME/CFS to be excluded from the MUS/PPS umbrella. We had our own separate guideline, PEM was recognised as making the rehab approach harmful or at least not cost effective, and there was...

I wish Whitney well but I also wish he would be more careful about attributing his improvement to an unevidenced protocol. I hope this doesn't turn into another situation where a prominent ME/CFS sufferer becomes the poster person for unevidenced treatment and thousands end up being harmed. We...

Is he equating ME/CFS with burnout?

So they have a structure, but what treatment will they offer within that structure, I wonder.

Oh goody, I can't wait for my local Goop-clone NHS provider to offer me some wellness coaching and a bit of social prescribing. I'm sure some positive thinking and joining the local papier mache group will do wonders for my OI and pain. Or perhaps I could learn to belly dance and join a witches...

Moderator note: This thread is temporarily closed for moderation review.

A further thought, @rg2000. We have previous experience of people joining the forum to share their hypothesis and presenting it as you have done with multiple links to research. Thus can be off-putting as most of us have limited capacity to tackle so much input at once. It also leads to...

Welcome to the forum, @rg2000. I don't have sufficient knowledge to comment on your hypothesis, so I'll ask a question instead: What tests do you think could be done to test the hypothesis, either to demonstrate support for it, or, equally importantly, to disprove it?

The interview is on a website called Chronic Living Therapy. https://chroniclivingtherapy.com/

That is truly terrifying.

But Katharine was involved as a researcher who researches patient's experiences, not as 'patient engagement'.

This arose earlier in the thread. Katharine says in her article that she studies and that, they are described in some literature as MUS. She does not say she thinks they should be so described. On the question of whether ME/CFS is classed as a disease or syndrome. I asked google the difference...

I have read back over this thread. It seems we have two contrasting perspectives among those taking part. We mostly agree that the main content of the article describing serious issues faced by pwME that are not being provided for by medical care is fine, with the article making it clear that...

I wonder why I find the questionnaires designed by Jason so completely useless and pointless. Maybe it's because he is a psychologist, not a physician, so symptoms are just things to be ticked in boxes and added up on lists, not medically diagnosed according to the whole picture of the patient's...

I think people need to be clear here that the problem here is the RCP and BPS people, not Katharine. She has shown multiple times in this and other actions that we have discussed on the forum, that she is absolutely on our side and working hard to fight our cause with very sensitively and...

I don't think that's what Katharine is saying at all. She was invited to meetings that were not minuted or made public for whatever reason. It's normal to respect other participants in a meeting by not retrospectively making public what they said without their permission, particularly as none of...

In the context of what is being revealed about the articles in the journal and the plans for care, I think it's really important to see @kacheston getting a toe hold with an article that points clearly to the dangers of the ongoing BPS approach. I hope the other article writers and RCP people...

I can see the point that discussions, for example, of plans for a series of articles for a journal, might be done privately, and therefore individuals taking part in that discussion would consider it unprofessional to make public comments about what what discussed afterwards without the other...

I have only read the abstract and the section quoted above so far, but I'm struggling to see the point of this. If someone has symptoms severe enough to affect their lives and function, lasting more than x months, and that arose after covid infection and are not explained by other diagnoses...

Thread with interesting discussion on the concept of shame Edit: Thread: Shame, (In)visibility, and Ill Feelings, 2025, Cheston