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Analogy If we had a scenario where migraines were just dumped under the term headaches. Then some headache researchers took a cohirt of headache and migraine sufferers to assess paracetamol and mindfulness as treatments and 70% found benefit that could then theoretically form the basis of the...

I disagree with your position. As far as I'm aware there was concern in the USA that Oxford fatigue studies shouldn't be assumed to apply to the more complex sick ME/CFS which is why they were droppped from recommedations. Not because the USA considered the studies themselves necessarily...

A lot of the CFS GET CBT research outside PACE used Oxford or Fukuda criteria didn't it? neither require PEM and Oxford is awful. Unfortunately because the thinking behind NICE CFS is to keep things broad (hence their own broad criteria), they can then refer to broad fatigue studies as evidence...

Any ideas what it means or if it has any worth? I was critical previously of Sonya Chowdhury, who seems to have become invisible, going to Geneva on behalf of AFME , no doubt exoenses paid. I couldn't see how it was "where it's at" in terms of what needed addressing and changing and with so...

I've corrected it, yes I meant that.

It's £6000, piddling amounts whatever way. Very useful for them to be able to channel it into the essentially old AyME which folded due to struggling for funds. Helps to separate afme from Crawley with criticism of their connection. Anything AFME do outside "support" is pretty irrelevant. They...

Sorry I think that's wrong . If you look at this, it says staff total costs in wages , NI & pension contributions is near £419 000, that's a rise of near £25 000 on the previous year , whilst from what I can see research funding went down near 1/2...

AFME oh you mean self management promotion for CFS? It's such a shame that charity raised nearly £130 000 very quickly at Xmas to "do what they do" i.e. Pay lots of wages - whilst MEA didn't do any fundraiser (apparently to not compete with biobank) and Biobank raised just £11,000. So AFME...

The 2014 IACFSME severe section is much better, I agree with you on the original. What severe ME patients need most of all is something from a dr, whether someone like dr kolgenic in USA who has severe ME experience or Speight in UK, validating the severe ME reality and limitations. What we...

The only primers sadly with info on severe ME is the iacfsme primer and NICE, if you want to risk using that flawed document. Iacfsme 2014 section is good, much better and download for free if google it but still very short andvnot really designed for hospital care issyes. As someone said...

Even in their initial description they miss out PEM as the defining feature. They have still a fatigue plus maybe some other symptoms focus which is ignoring ME /SEID - still.

Is this significantly any different to the highlight notice that's been sitying therd for years? It's a pathetic response to the "funding for ME is dire" report, they the MRC or CMRC with whatever funds, supposedly commissioned. As Simon says of course it isn't enough The tragedy is that the...