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Interesting bit about ME and the 1978 conference: I think there's some truth into this. I've always found it helpful to think of 3 types of ME. 1) The first one is the one described in the epidemics, which had a more obvious infectious onset and neurological signs. 2) The second one is the...

Interesting that White, back in 2008, agreed that post-exertional malaise is the "central feature of this illness", the "most characteristic feature of this illness". (see minute 13.45).

This is the paper she is referring to: The pathway from glandular fever to chronic fatigue syndrome: can the cognitive behavioural model provide the map? I think the paper is worth a discussion because it is one of the few papers that actually tried to test the CBT-model using a prospective...

Copied from the New Zealand thread This is the paper she is referring to: The pathway from glandular fever to chronic fatigue syndrome: can the cognitive behavioural model provide the map? I think the paper is worth a discussion because it is one of the few papers that actually tried to test...

I think that in criticizing Simon Wessely, it is best to focus on him making claims that are not justified by the evidence. For example, the reason why ME/CFS patients suffer the symptoms they have is considered unknown by scientists but Wessely gives the impression he got it all figured out...

Thanks Sarah!

Perhaps a little off topic, but I happened to be reading the paper where he used it. It's in Butler et al. (1991). Cognitive behaviour therapy in chronic fatigue syndrome. It wasn't actually Wessely who introduced the term because he refers to another paper: The reference he uses to is...

Could you say something more about the research RME is now supporting or what issues are causing the divide? Is it about GET/CBT, the broader issue of the biopsychosocial model or some other project like ACT?

A strange thing is that the Price et al Cochrane review included all sorts of studies that should not have been in there (for example a trial on chronic fatigue instead of CFS, or a trial on mindfulness rather than CBT). There were also quite a lot of unpublished studies as well, which we can't...

Vink & Vink-Niese really hammer on the fact that subjective outcomes can be unreliable. I found this passage on page 4 particularly interesting: And elsewhere they write with a bit of irony:

It's a very dense and detailed paper. I might have to read it again to really grasp everything and check out some of the arguments made. But overall I think this is a good overview of the problems with these CBT-trials and a good critique of the Cochrane review by Price et al. All of the major...

Yes, but if I'm not mistaken, that one is still ongoing. And it compares GET with graded activity. I was referring to published papers the authors might have used to claim the efficacy of GET in adolescents with ME/CFS. Had a quick look. I think there were some reports about rehabilitative...

There are a couple of CBT-trials (such as the Dutch FITNET trial), but no trials on GET for adolescnets with CFS as far as I know.

I think it's strange that they focused on long-term outcomes of CBT for adolescents. Because 2 out of the 3 studies they mentioned, did no longer find a significant difference between CBT and the control group. And of course the same is true for the largest CBT-trial for adults with CFS.

Powerful video. Well done @Adam pwme !

This recent news story might be of interest to this discussion: "Researchers define Alzheimer's-like brain disorder. LATE symptoms resembles Alzheimer's disease but has different cause." https://www.sciencedaily.com/releases/2019/04/190430121800.htm I hope we'll be at that stage of defining...

My commentary to this article was published today: “The illness perceptions of CFS patients are evidence based.” https://journals.sagepub.com/doi/full/10.1177/1359104519846606 The authors' response can be found here: https://journals.sagepub.com/doi/full/10.1177/1359104519846571 They seem to...

Just tell them to call back.

What about Parkinson's disease and Alzheimers' disease? As I understand it, in both cases there is an observable and objective pathology that ME/CFS does not have, but a common causal process seems to be missing in those illnesses as well.

Does this mean that you have to wait for KCL's response and if they deny your request and use an exemption, that you have to go the ICO and perhaps the FTT all over again? And if KCL looses those appeals, does this mean they can try out a new exemption and start the process all over again?