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If people disagreeing with the wonderfulness of CBT or GET are accorded their academic or professional status this undermines the narrative of the irrational patient. One wonders if NICE are now also subsumed within the term ‘activists’.

Thank you for sharing this link @Caroline Struthers

Taught bias Coached response bias Response coaching in subjective measures Coached self reporting bias Experimenter trained modification of subject’s self reporting Trained modification of self reporting for subjective measurements Research induced modification in self reported responses...

When are the proponents of central sensitisation going to actually propose objectively measurable signs of their belief system? If they are arguing this is a feature of brain/nerves biology, albeit it triggered environmentally/socially/psychologically there must be some measurable change in the...

It is interesting that the value of a scientific theory/approach is its ability to predict the future. Those that are expressing surprise at the existence of Long Covid should perhaps ask what was wrong with their understanding of post viral conditions and wonder which groups were not surprised...

Not only did he retire (an aside, it would be interesting to measure the rate of articles published pre and post retirement, and similarly with the number of his talks for insurance companies) but also his retirement has been used to justify rejecting freedom of information requests for the PACE...

I think we have a consensus that appropriate rest and avoiding PEM are important to avoid worsening ME. But we lack a consensus as to whether sufficient rest early on in the course of our condition would make a positive difference to our long term prognosis or not. Personally I wonder if I had...

This article is about the problems of controlling psychological research, including how ‘active controls’ may or may not help. These are issues that the original PACE experimental design was in theory set up to address, but undermined by their selective reporting and outcome shifting, over and...

Increasingly the bulk of CBT research in relation to ME has abandoned the idea of active controls. It feels like the psycho ME/CFS researchers (deliberate ambiguity of terms) have abandoned completely any attempt to eliminate bias as they have moved away from even attempting to use objective...

Perhaps a tangent, but the things I wished I had been told about early on in my ME, and which getting on top of actually makes a difference to my everyday life, are PEM, orthostatic intolerances and food intolerances.

We have a number of unanswered questions in relation to this: What if any are the differences between ME and post viral fatigue syndrome (PVFS), particularly in relation to the potential for spontaneous recovery? Does PEM distinguish ME and PVFS in any way? Is it accurate to say that people...

I don’t really understand the process, but it sounds rather like a ‘fishing exercise’ if you will pardon the pun: Not clear what either no response or a positive response actually means, though obviously interesting if you get a positive response even if it is transitory.

It is even more ironic in that BPS advocates argue because CFS is solely assessed and diagnosed on the basis of self reported subjective measures, it is only possible to evaluate it by subjective measures and there is therefor no need to be concerned about potential bias in unblinded trials...

It did end up in the courts, though my friends had not been concerned about compensation, rather sorting out what went wrong, both in surgery and in the subsequent 18 months it took to get the X-ray. Unfortunately they were never even given an apology by any of the various services involved...

I suppose it is very hard to identify the extent of this problem, because it is not something doctors would normally record. I guess you rarely see in medical notes ‘deliberately ignored reported symptoms because patient has fibromyalgia’. The is a very real risk that doctors are being trained...

I am reading the original “But I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for” as the person with fibromyalgia not being treated at all for any presenting symptoms or conditions whether they are related to the fibromyalgia or not, which...

The Times has published Dr Shepherd’s response to the problematic article ‘Why is Britain the Long Covid Capital of the World. His most telling point is the figures indicate that estimated levels of Long Covid are no higher in the UK than elsewhere, and indeed are lower than reported for some...

I agree, in retrospect the most important things I could have been told about in the early days of my ME were in order of importance: PEM orthostatic intolerance the risk of food intolerances sensory hypersensitivities. I have included sensory hypersensitivities because, though in extreme they...

Not fully read it yet, and everyone else may be familiar with this review article, but if not it may be relevant to this discussion “Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)” Rasa et al, Journal of Translational Medicine 16 (2018) link to paper...

Please not just more use of questionnaires!