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Definitely not the NIH Wallitt team. Their so called PEM research was dreadful.

Not really - see the next quote. So the few studies with long term follow up showed comparable benefit from 'energy conservation' and increasing physical activity. Doesn't that scupper the supposed point of the exercise interventions, just as the long term follow up of PACE showed no between...

i think charities like to produce their own information materials, not use other people's. There may be smaller charities, like local ME/CFS groups who would be glad to use them. But, as Jonathan Edwards says, many want something more upbeat and hopeful sounding. My local clinic's materials...

There are threads in this subforum for some other UK services. Anyone can start or join any of those threads.

I assume participants have to be in Europe.

First it was the psychiatrists, then it was the rehabilitationists wanting to own us and tell us how to manage our lives. What gives them the right? They have no more knowledge to help us than any random member of the public. It's BACME all over again - fill the gaps with false explanations and...

Why would they guffaw at it? I find the whole setup of elearning modules with arrows to follow and pictures and multiple choice questions rather childish as a way of presenting information to experienced professionals. Why not a well reasoned article with a clear summary of key points? But...

It's interesting to me that others are far more critical of the module than I was. It was such a relief to see something in the NHS that acknowledges the severity of severe and very severe ME/CFS, and makes it clear that it requires home medical care and appropriate hospital provision when...

Judging from the description of the DecodeME study, the project team contracts out the sample collecting and wet lab work to expert organisations, they don't do it all themselves.

Thank you @Lucibee and @hotblack. I managed to sign up. It's a long process but it went smoothly for me. I have done the module and submitted feedback. I thought it was very good. Now we need everyone involved in care of pwME to do it too. That means every GP should be required to do it, some...

With Glasziou involved, of course they were going to claim exercise is beneficial with no evidence of harm. He doesn't understand PEM, but that hasn't stopped him.

We also need to be wary of current ME/CFS consultants in some places doing the diagnosis while holding on to antiquated views about treatment. I was horrified to discover from patient feedback on the MEA website about my local clinic consultant who tells people he supports PACE and believes in...

I have just re read your article, Michelle. It is so good. I think meals on wheels may not exist here any more, they just tell you to buy frozen microwave ready meals. Which I do.

Thanks, @JellyBabyKid, that's helpful. So the social bit of biopsychosocial says there's no point BACME therapists telling someone to keep activity diaries and pace their activities and take rest breaks if they need to go to work to survive, or telling them to get 8 hours uninterrupted sleep if...

It's hard work for me to read something like this because of the subject specific jargon. I do realise it's not written for people like me not tuned in to this academic field. I really shouldn't attempt it late at night. From an online dictionary: intersectionality the interconnected nature of...

Will there be a video to watch afterwards? I hope so. I realise this is probably mostly intended for clinicians and scientists, but I hope patients will have access too.

I have been doing a bit of a catch up on documentation currently available about Dorset ME/CFS services. Or rather, as they persist in calling it, CFS/ME. Even the local support group still refers to it as CFS/ME. It looks like it's all the same as before. The support group is active and still...

I have just glanced through the list of authors and the list of references. It's clearer to me now why the authors interpret their research in such a biased way. They are a bunch of psychologists and psychiatrists, it's published in a Health Psychology journal, and the reference list is stacked...

Wasn't it Wessely who started this nonsense about GWI being all in the mind and therefore amenable to psychological therapy? I feel so sad for the veterans still being subjected to this crap. The research clearly shows the whole paradigm is lies.

On the difference between Landmark and Chalder. Landmark is not a clinician and LP is not a therapy, it is a commercial training program that claims to help people understand that they are not sick, and to 'live the life I love'. The whole funding model is based on promoting and selling this...