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Yes it is strange, isn't it? The whole fear avoidance theory doesn't really work without the deconditioning part. But because this is an element of the theory that can actually be tested and debunked, they try to avoid talking about it directly. They just talk about how fear avoidance was an...

Well, it does seem to say that some ME/CFS patients had normal activity levels. So ME/CFS is unlikely to be due to low activity levels.

Gonna play along with this devil's advocate game... I suspect that an important reason why scientists and the NIH aren't keen on investing in ME/CFS research is that they think the condition is too heterogeneous to find something. I fear that they see it as a collection of all people with...

There's another good docu on ACT UP and AIDS activism: how to survive a plague by David France (he also wrote a detailed book about it). There's this one scene which I found very impressive: Peter Staley's speech at the International Aids Conference in 1990. He was mostly speaking to...

Has anyone been able to access the rituximab paper and Rowes editorial?

Question: does a lack of structural change or tissue damage always suggest a signaling problem in the brain? Or there other examples of diseases that are chronic but cause no observable changes in organs and tissue, or a degenerative pathology (thinking of mitochondrial disorders for example)?

Bit weird: to test the validity of their new questionnaire (RIFD), they compare it to another one (SCAN). But as far as I can tell SCAN is used to detect psychopathology, not functional somatic disorders such as FM, IBS or CFS. Does anyone know of a study that tested the validity of SCAN to...

That may all be true, but for this particular subject, this may be the right format. I think the severely ill ME/CFS patients are quite extraordinary. Anyone who has seen them or cared for them will immediately understand that chronic fatigue syndrome is not the right term for this condition...

@Grigor

So, in summary, Weir and Shepherd both signed this open letter to Psychological Medicine about “recovery” and the PACE trial. But in the case of Weir the comment is :"No action other than the process of open declaration". While for Shepherd the comment is: "At each meeting, the chair will review...

Question: Can the evidence for a genetic component in ME/CFS be used against the view that this is the dustbin of medicine. In other words; is it an argument against the view that ME/CFS represents a collection of all sorts of rare diseases that modern medicine cannot explain and have fairly...

Does anyone have access to the paper? Can't seem to read it.

Haven't received a response from the journal, but I see that both spelling mistakes have been corrected. That's probably because they do not change the interpretation of the text and the paper was online for only a day. I'm very relieved. I would like to thank you again, @Dx Revision Watch for...

I've sent them an email indicating both mistakes. I don't know if keywords are any different in this regard as it appears in the publication itself. Will see how the publishers respond. I'm hoping that a change in the text is still possible because it's a spelling mistake that would not change...

Thanks for the compliment. I feel really bad about the mistakes (using SDD instead of the correct SSD) as this takes away any respectability to this comment. It's a bit like a paper on CFS would spell it every time as CSF. Feels like a missed opportunity to make these arguments. Don't know how...

Yes, you're right. Darn, very unfortunate these mistakes. It is no longer possible to change to text. But I will let the journal know, perhaps they will issue a corrigendum or something. Thanks for pointing this out @Dx Revision Watch

Could not follow all the talks (it's really exhausting) but here's my short impression of the NIH conference: There were some bad things. The online feed kept falling out, some presentations hardly said a word about ME/CFS and there were a lot of empty chairs. The people that were there and...

Even if it is true that many physicians overlook psychosocial factors, I doubt that's because they consider these factors unimportant. More likely explanations are that doctors think they have little influence over these psychosocial factors (they can't undo a divorce, a death or a stressful...

Well, done John. I think few could have handled this as well as you have. It's unfortunate that the Tribunal still regards this request as vexatious because they've agreed that it is well-reasoned and that your motive is to get to the truth. There seems to be a discrepancy between how the term...

Thread by ME Action (Jamie S) on Prusty's talk: