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Thank you to @InitialConditions for your work on this, and also to the other commenters so far. I am not with it today and am struggling to get my head around all the FIO information, so will return to the thread later. My main concerns with the consultation draft were that it could be seen as...

This rush of people signing up to this research project rather contradicts the assertion by some BPS researchers that people with ME are anti science. We are not anti science, just anti bad science.

I echo what @Daisybell says.

It is impressive that advocates of somaticisation can attempt to spin evidence contradicting their belief system as supporting those beliefs. The abstract does not say how much of the three years from first symptoms to the correct diagnosis was lost to misdiagnosis, but surely the first take...

Surely they are saying all evaluations of “behavioural and exercise interventions” are inherently crap, but because we can’t do anything about it we will ignore that fact and pretend they are OK. Which is wrong in two counts, firstly if something is inherently crap, that is not a justification...

Prof Crawley explicitly argues this in press interviews, which possibly why she is also an advocate for the Lightning Process, as well as for CBT/GET and now ACT:

Dr Shepherd is an ME sufferer, a GP and Medical Advisor to the British MEA, who, despite the obvious concerns about this statement, is usually spot on. He is someone I have a lot of respect for. The MEA does a lot of good work and currently is very active in relation to getting people with ME...

‘Concord fallacy’ is the idea of having already invested a lot in something the best way forward is to invest more. Also within ‘cognitive dissonance’ is the idea that we see things we have already invested a lot in as good, to avoid admitting we were wrong.

Thank you, for this important link, I had previously read this, but had forgotten, though am not surprised by, how high, both the incidence of orthostatic intolerance and of POTS are in ME. Certainly any one diagnosed with ME should be informed about the potential impacts of orthostatic...

Can we say with out current level of knowledge that POTS is a symptom of ME, or only that orthostatic intolerance is probably a relatively common symptom of ME? There seems to be some variation as to how orthostatic intolerance in ME presents. Obviously for some their orthostatic intolerance is...

Presumably this lack of flexibility is a feature of most benefit systems, insurance systems and work place pensions internationally. For example my work related ill health retirement required predicting when I was some twenty five years away from retirement age that I would never be well enough...

It does seem relatively common in chat rooms for people with ME to report a perceived link between dental issues and their ME. However these are self selected cohorts so may in no way be representative. Also if there is any association it is hard to know whether there is any direct causation and...

It is surprising the potentially lifelong damage that misinformation given to parents of a young child can have. Many years ago I was assessing the communication needs of a group of adults with physical disability, whose long established day centre was losing its funding for their places. I was...

@Michiel Tack, thank you yet another interesting read. The series as a whole will be a useful resource.

If you could demonstrate, all other things being equal, that 75% of children bitten by a dog later go on to develop IBS but never develop non epileptic seizures and 65% kicked by a horse go on the develop non epileptic seizures but never IBS then I would consider there is a strong argument for...

Until they develop a model that predicts in advance who will subsequently develop which symptoms, these results mean nothing.

I feel at some point we need to address head on the issues that result in doctors struggling to understand/believe our experience/symptoms. It may help that some doctors can report on the issue from both sides, but as we have seen before that alone is not enough. This is something I have been...

it might be this The disabled doctors not believed by their colleagues https://www.bbc.co.uk/news/disability-56244376

Don’t forget the same people have been grooming, oops sorry supporting, these children for at least a year, so it is quite possible that some of these words were used by participants.

Yet another study involving children not recovered after the intervention by the Bath CFS/MES specialist service. Does this proliferation of studies cast doubt on the claim that 85% of their patients are ‘cured’ in the lay understanding of the word? How many of these participants could have...