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I wonder if someone from the current PSP on ME/CFS might like to reply to this, to note that a substantial portion of Long Covid is likely to be yet another post-viral fatigue condition, and so the outcomes of the ME/CFS PSP will be relevant. Of course, unfortunately, the current ME/CFS...

The low numbers achieved on ME/CFS polls often surprises me. In my country there was a poll against the extension of the school year by two weeks this year, to offset Covid-lockdowns. It got over 20,000 votes in a day, I think, and that's in a very small country. I know it's comparatively...

I missed this. :thumbup: chrisb. :rofl:

A number of posts about PEM have been moved to PEM, timing, symptoms and levels of disability

A post about Forward-ME has been moved here: United Kingdom: News from Forward-ME Group

I meant for people to click on the arrow next to Rvallee's name. But excellent that you have found that content.

Posted on another thread - WHO guidelines for Long Covid (click on the arrow besides rvallee's name in the quote)

This thread and the links have information that I think is really relevant to the forthcoming NICE roundtable about the ME/CFS Guideline. Good therapists know that a lot of what they are required to do isn't helping anyone. If counselling services are stretched, target them to people who want...

That's a pretty important find @rvallee- the therapists are exaggerating the benefits of talking therapy, and even with that, the performance data of IAPT still looks rubbish. Elizabeth Cotton looks like she might have some useful things to say...

Posts about GRADE have been copied or moved to Who Agrees That GRADE is (a) unjustified in theory and (b) wrong in practice?

Some posts have been moved to Structural spinal problems and ME - blogs and social media

I've posted this paper as much for a letter that was written in response to it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1371803/ Chronic fatigue syndrome, D.K. Arya There are a few interesting statements, but this one stood out as illustrating how little progress has been made in the last...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1371754/ Abstract In order to examine the prevalence of patients with symptoms fulfilling the criteria for the chronic fatigue syndrome an extensive survey was carried out of general practitioners on 10 local government lists in two health boards...

I don't agree with everything in this paper, but it's a lot closer to being accurate than many more recent papers.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1371214/ Abstract A case definition for post-viral fatigue syndrome is proposed within which various subgroups of patients exist. Any one treatment may not apply to all the subgroups. In particular, patients' experiences do not show that avoidance of...

A NICE guideline recommends the use of acupuncture for chronic pain, suggesting there is strong evidence for efficacy. So, quick assumptions about the capability of a NICE committee to get things right, might be wrong.

It certainly is useful in helping us understand what is going on. And worrying, because if there is a rethink of the Evidence Review, then that would destroy the main advance of the whole guideline process. At least we know better what we are up against.

My son and I get this. My son in particular can get the most dramatically coloured feet - one half completely white and one half red-purple. I am not so sure. I guess it depends how common Raynaud's is.

In our conversation with @Hilda Bastian, she made it clear that the move to subjective measures involving patient reports was seen as a very good thing by consumer advocates - perhaps they even asked for them. It was seen as 'listening to the patient'. It just seemed that they did not give...

I've just quickly skimmed this, but I thought it was good, and better than I was expecting. Especially being published in the Mayo Clinic Proceedings, given that the Mayo Clinic has not been a good place for a person with ME/CFS to get care. I think it's worth looking beyond the abstract; it...