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Not looked at the article yet, but any thing that risks patients or clinicians seeing ‘pacing’ as a treatment rather than a way to try to avoid PEM and deterioration in ME is dangerous. It may possibly be that good pacing can create better conditions for some degree of spontaneous improvement...

It is reminiscent of the idea in the 1990s that Prozac could treat ME. If my memory serves my correctly some doctors got very enthusiastic, but when proper controls were used it had no effect.

My first thought on reading the abstract is that the argument for a functional overlay in PPCS are logically in the realm of homeopathy’s doctrine of similars.

We lack any reasonable evidence that appropriate psychological support is helpful in managing psychological distress specifically associated with having ME/CFS, though we can say on the basis of the published research that CBT aimed at treating/curing ME/CFS is at best ineffective and for some...

Last Friday I got my spit kit in the as part of the new wave under the extended criteria. Got it sent back yesterday, when my PA was here to post it.

You don’t even have to compare to other conditions for people that have fluctuation and relapsing and remitting ME. Over the thirty years of my ME I have had periods of quite dramatic improvement: indeed after the first four years or so, I believed myself recovered for several years up to a...

So deeply frustrating. (If ‘decimate’ literally means reduce by ten percent, what would reduce by eighty percent be?)

A tangent to this thread, but did anyone ever manage to access the PACE data from the sharing platform where it was supposedly accessible. [added - see our thread on the PACE trial data https://www.s4me.info/threads/pace-trial-data.2337/page-9#post-483591 though it seems no one has reported...

In this context would it be appropriate to raise with NHS England and the Health Minister that, in addition to concerns about Sir Simon Wessely’s appointment as a non-executive board member when he is co-authoring an attack on NICE, could they also confirm if he is or is not the senior health...

Though it is still early days and despite their prior 20 years of champion the BPS approach to CFS, they do seem to have taken a more balanced view of the condition and don’t now just take their expert opinions from the same narrow group of vested interests. Since their round up of the launch of...

As has been said, how can it be that some of these people have treated people with ME, but understand so little about the condition? It must take an exceptional ego and an exceptional lack of intellectual curiosity to miss so much, both in terms of the academic debate and the lived experience...

I think the Sonya Chowdhury/Action for ME letter is well pitched for a Newspaper context. I hope it gets published/posted. I look forward to the various more considered responses to the journal article too. I was wondering if the timing of the paper and the KCL press release was deliberate or...

The long list of ‘after the fact authors’ illustrates that this is not a study or critique of an academic issue rather an assertion of a group’s opinion or beliefs.

This extract from Brian’s blog cited by @Andy is worth repeating: My bolding.

GET as described in the main research studies, such as PACE is described as using fixed increments, so if the authors are saying that their GET is ‘symptom contingent’ they are then saying that they have introduced a new unevidenced therapeutic intervention, so the previous research, regardless...

Yes, I kept seeing the word ‘study’ and thinking what have I missed. The paper is if anything an activist manifesto, rather than a reasoned scientific critique. A political tactic, to accuse those that disagree with them for doing exactly what they have done themselves.

Telling children to lie about their symptoms also puts their physical health at risk. For children with ME it puts them at risk of over exertion and the associated long term deterioration preventing any effective pacing and symptom management, but also children with other/additional conditions...

Great that our society’s current fetishisation of exercise is being challenged. I am willing to consider the possibility that, all other things being equal, exercise can be a good thing, but it should always have been obvious that for some exercise is counter indicated or should only be...

There is an enormous amount of potential ME research and also a large number of small scale projects that remain un replicated and requiring follow up. However DecodeME is asking a specific question, are there any genetic patterns relating to ME? A successful conclusion to this study will then...

I am out of the sequence of comments, but I don’t think even if successful DecodeME will identify a specific genetic cause for ME, rather identify an association which will give clues as to which biological system or biomedical aspect to investigate for possible aetiologies and/or possible...