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I'm hopeful we'll end up getting much improved guidelines, but I think we have to be cautious and remember the past to be sure we do get these improved guidelines and not be taken in with NICE nice speak. The MERUK report mentions how there will be patients advocates and all these noble things...

That is deeply disturbing. The section on Le Packing is totally unbelievable.

But surely, surely the criteria have to be specific enough to define the disease in question otherwise they are of no value at all as diagnostic criteria? If you try putting the word pain into Oxford instead of fatigue we may see what a nonsense it is then, you'd include all diseases with pain...

I think you're right Arnie. And also with the changes in employment we're seeing, where more and more people end up being self-employed, these people don't qualify for sickness benefits if they are ill. So with this change in employment practices, there will be fewer people for governments...

WHO has classified ME as neurological since 1969. Wessely's concern here about ME being classified as neurological needs to be seen in the context of the Wesselyites fighting and scheming for years to get ME reclassified by WHO and UK authorities as a functional somatic disorder. As such, many...

Anil tweeted this second letter, which Wessely sent Aylward in October 1993: October 1993:

To explain so much of the ME saga so well, so clearly and succinctly ( ok I know it's long but it's still succinct!), it's brilliant. Thank you very much indeed Nathalie Wright and the Independent.

Very true, and the same can be said for the Lancet and PACE.

Further Quotations from “Chronic Fatigue and Myalgia Syndromes” by Simon Wessely In: Psychological Disorders in General Medical Settings edited by N Sartorius et al published by Hogrefe & Huber 1990:82-97 Margaret Williams 31st December 2017 So that people may judge for themselves whether...

Maybe, but that's no excuse. The charities should be there to unequivocally promote the interests and care of patients. Personally I don't think any ME charity should in anyway sit on the fence or appease the BPS brigade, no matter what.

Too true!

Quote: "Dorothy Bishop, a professor of developmental neuropsychology at the University of Oxford, told BuzzFeed News she was also concerned about the “wisdom of running a trial [into something] that doesn’t seem to have much scientific basis and is commercial, because if you find a result you...

http://www.margaretwilliams.me/2017/thirty-year-retrospective.pdf The incalculable contribution to medical science of Regius Professor Sir Simon Wessely: a thirty year retrospective. Margaret Williams 28th December 2017

Great letter Graham et all. I think this point from Paul is absolutely critical to protecting patients. The CBT/GET view of ME is shown by the scientific evidence to be invalid (IOM report etc), therefore the present guidelines based on the discredited BPS model must be withdrawn now, no...

Thanks, that sounds feasible if I could turn the bluetooth off and only put it on to download info.

Great article Clark, thanks! Do these heart monitors use wi-fi or any form of EMR to function? I ask as I have problems with wi-fi.

Excellent letter, excellent point, no wonder it was rejected.

Oh sorry large donner, I must have deleted the wrong section!

I see what you mean but surely their is another aspect to their duty of care and that is to EC's patients, children, who are either cared for directly by EC and those who are treated according to EC's research. They don't seem to give a fig for them. As well as the ethical aspect of this where...

Or could it be one disease which manifests differently according to people's genetic make up/environmental exposure/initiating infection?