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Is no training better than providing misinformation?

Only skim read so far, but looking like a really excellent article that will need sharing widely.

Still missed the point that any increases must be within an individual’s limits and that people should be prepared that they may hit a ceiling even when only gradually increasing activities by small increments.

I tried CBT some eight or so years ago and was lucky enough to have a very amendable newly qualified but bright practitioner who was happy to do lots of background reading into ME and importantly who grasped the concept of PEM. At that time I was oscillating between mild and moderate, but had...

It was eight months from the surgery to getting an X-ray, not sure how long then to getting it taken out. It took a number of years to sort the compensation, but what annoyed them most was the hospital never apologised.

Though this group have real problems understanding that association is not causality and invariably decide on a direction of causality that suits their own preconceptions regardless of other evidence.

Are we seeing a lot of work being done in order to develop a stereotype? What then happens to those people who fit in with that stereotype who then develop a life threatening medical condition? I repeat here the example of a friend on mainland Europe, who had a complex medical history...

Given we have to rely on subjective reporting of symptoms at present, we can not conclusively distinguish between remission (an ongoing underlying condition that is largely asymptomatic) and recovery (no longer have the underlying biomedical condition). I was for a couple of years at a level of...

Yes for best results you would need to be able to go back in time to test people before the onset of their condition, though Covid-19 does present a theoretical opportunity to do a prospective study of an entire population, with enough subsequently developing the condition to actually get some...

I have not been able to spot any more information on her website (see https://drmyhill.co.uk/wiki/Main_Page ). Though Dr Myhill is not without controversy, she is a passionate advocate for people with ME. It would appear that the BPS lobby are winning in their conflict with her. I don’t think...

A friend alerted me to the following that has been posted on Dr Sarah Myhill’s facebook page see https://www.facebook.com/groups/108048875899603/

Interesting that they did not include any changes in hours worked or benefit claimed. I seem to recall that somewhere an evaluation of the UK/ME specialist services showed service users ended up working less and claiming more benefit on follow up.

Yes, you do read accounts of some people’s experience of say GET where the practitioner is so skilled at getting participants to a stable base line and at encouraging them not to over exert that it becomes more like a form of pacing. Also I have read people saying such as ‘my health was getting...

I have come to profoundly distrust the phrase ‘evidence-based treatment’, as it generally seems to be bad or misleading evidence.

When I first started working in clinical settings, part of my geographical area was very strongly Roman Catholic with regular groups going to Lourdes. I got very practised at introducing the concept of ‘spiritual healing’, the idea that a cure might not be reflected in the hemiplegia or the...

My night sweats are also largely head, neck and chest which I find interesting. I can wake with my sheets and pillows soaked in the upper part of the bed, but from my waist down the sheets are dry.

There is sweating during exertion. Here I do not seem to have spotted any pattern as to when it is excessive and when normal. But then also how do you decide what is excessive for someone who is over weight, unfit and ageing. However it is perhaps odd that at times I can do bits of housework and...

Also not sure if this is the best place either for this link, but I liked this piece by Dr Shepherd on the issues around comparisons between long haul Covid and ME https://meassociation.org.uk/2020/07/update-post-covid-fatigue-post-long-covid-syndromes-and-me-cfs/

Not sure if this is best here or in its own thread, but there is a great response by Brian Hughes to the suggestion of Covid outbreaks being mass hysteria https://thesciencebit.net/2020/07/27/post-covid-syndrome-myalgic-encephalomyelitis-and-the-recurring-pseudoscience-of-mass-hysteria/

So, so depressing.