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Always good to see researchers taking the randomised aspect of ‘randomised controlled studies’ seriously (not).

Also it is a complex issue teasing apart migraines as a symptom of ME and migraines co occurring with ME. I get migraines when in PEM and I see them as a symptom of the PEM, their frequency, duration and severity are associated with the current severity of my overall ME. However I also get...

I hope they are still going as support for families facing inappropriate child protection enforcement when professionals refuse to believe in the reality of ME is so vitally important. At least with the new NICE guidelines it should be easier in theory for parents to refuse GET here in the UK...

Great to see the numbers signing this petition. Also the comments added strike me as particularly powerful in their sheer number, hammering home the issues of PEM and that exercise therapies harm. Does change.org display the number of comments anywhere?

My understanding is that the letter has already been sent in order to reach Cochrane before their September meeting, though people can email S4ME if they want their name added to the online version. Presumably we will present the petition separately to Cochrane at a later date in order to...

Worse it is treated as definitively ruling in a psychosomatic cause.

Though it is interesting to ask how effective is Cochrane as an organisation, and how dependent is the review process on authors misusing the review process to promote their own vested interests through biased reporting, I am not sure S4ME should be analysing in any depth reviews that are not...

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.