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Very sorry to hear this. Oh no. :( It also really bothers me that many people who have clearly developed ME/CFS after contracting covid and long covid are not being diagnosed as such. More erasure.

Sometimes I think about the money that is being wasted on these clinics that could have been spent on other things to help us. I am also a long covid patient (14 months). I don't know how much has been spent per patient; I have not sought referral to a "clinic" for obvious reasons - especially...

I tried to skim-read much of this paper. Many overall problems, but putting those aside (huge caveat!), this paper is not specific to severe and v severe ME/CFS so it shouldn't be in the title. This seems important given that it purports to describe the experiences of a particular group of...

The constant framing of ME/CFS around the issue of exercise harms us all. Severe patients - and there are so many of us - are also completely erased. It is very sad and frustrating. Exercise harms ME/CFS patients, and has left many more disabled than they were before. Aside from that it is not...

Sorry if this is covered already, but I was prompted to wonder after reading that patient experience whether the experiences of severe ME/CFS patients will be part of this?

"Human Rights"? A bit much in this PACE/Long Covid context.

What genre of quackery is it? Is it the same sort of thing you see online with people trying unproven treatments (eg trying abilify), or something else?

I also found this bizarre and disturbing. What is a "biomedical" PhD student? Do people really talk like this? Worrying.

"Consortium Against Pain in Equality (CAPE), led by Professor Tim Hales, University of Dundee, researching the impact of adverse childhood experiences on chronic pain and responses to treatment Psychosocial mechanisms of chronic pain, led by Professor Ed Keogh, University of Bath, researching...

I am genuinely disturbed when I think of all of the people "studying" and "training" in this stuff.

Apparently many of these BPS-style postgrads studying under people like TC are women? That is what I was told and what I have observed online

Does anyone think it's remotely possible to get a warning on the video to the effect that this is basically a psychological approach, as this is the person's area of "expertise"? What she says about exercise is clearly untrue and unsafe, and this should also be of great concern to anyone looking...

Can anyone just upload a course? How did someone with the history and background of Chalder come to be doing a training video on this topic at such a crucial time?

Yes, it really seems like a problem that she is "training" people - someone should be made aware of this content, shouldn't they?

Is there any mechanism for this? She is not a doctor

Skyline in background image really lends it that all-important scientific legitimacy. Embarrassing

"Mind-body connection"; "Yoga, Meditation, and Mantra" - groundbreaking stuff!

You are right. I was just quite upset. Sorry! :/

!!! Tens of thousands?

To me, that is one of the most frustrating elements of this whole thing. Why has this not been done? At this rate it will take decades to get anywhere, as people are not approaching things in an effective, efficient way. All of these medicines they are trying with patients [at the clinic] should...