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Are we getting the format of a strongly worded protest letter to NICE about the potential bias of the Committee: - Introduction about the protest against the current guidelines based on bad science relating to CBT/GET, leading to the current guideline rewrite (perhaps references in appendix of...

I don't know if anyone has already posted this link, so appologies if it is already mentioned in this thread, but Carol Monaghan has already raised this in Parliament in the discussions about a full debate on ME, see...

It sounds like a great result for the US.

Can not face reading yet more bad research, but presumably the evidence for this change is open labelled trials with subjective measures and biased or inadequate controls.

I very foolishly have just read this entire thread in a single sitting (rather a single lying) and probably should assimilate and reread before commenting. However, I do feel, whilst making sure we do not not undermine the S4ME members who are also lay committee members and that we do not...

So the committee rewriting the ME guidelines is being recruited by the RCP even though if my memory services me correctly, they indicated that they felt the old guidelines were fine as they stood.

Interesting, might this contribute to understanding the apparant phenomenon that a large percentage of people with ME find a flu inoculation triggers an ME crash and another large percentage find it has no negative effect for them?

I think I mentioned before, that in my previous work life I have come across the elderly confused physically restrained in hospital settings and use of what amounts to chemical restraint, in situations where no formal committal procedures had been undertaken. It would seem to me as a lay person...

@Sly Saint , I had very ambivalent feelings about 'liking' your post introducing this thread. It is an important issue so I wanted to add to its profile on this forum at the same time 'raging' that these appalling nineteenth century responses are happening in twenty first century would be much...

A further bizarre feature of this whole process is they posit a psychiatric condition, that does not coexist with a 'physical pathology'. This must be the only psychiatric condition that by definition would be cured by acquiring a biomedical condition. My working life as a speech and language...

Again this is a study that excludes the more severely incapacitated with 52% still in work, a figure which rises to 74% if you include home makers. Though they indicate that 91 (26%? over a quarter) of participants were subsequently excluded because the presented a 'know physical pathology'...

I agree it is a major flaw in any interpretation that there is no attempt at establishing any form of control for this group. Also there is no clear indication how they evaluated whether there had been reliable elimination of all biomedical conditions potentially causing these symptoms. Given...

They never mention the high medical and societal cost of a misdiagnosis of one of these unedivenced diagnoses. A good example was a German friend who had had long standing chronic fatigue and a heart condition that required surgery. Following surgery she experience severe pain whenever she bent...

It is hard to tell what is being suggested from these links. Historically it is well known that significant fatigue can be part of the aftermath of a stroke, but it was previously assumed to resolve as the electrical activity in the brain stabilises and rebalances (sorry struggling for the...

Thank you @dave30th for having worked so much harder and so much longer than you I initially anticipated on this brief. You definitely have helped push ajar the door to change, though hopefully the recent developments at Cochrane and NICE do not mean we are about to have it slammed our faces again.

This is sounding a bit like the idea of 'original sin' dating back to the fall of Adam and Eve.

As well as the two sleeps idea, there are the Southern European countries that regularly make use of siestas, and presumably lots of other cultural variations in sleeping patterns around the world. This link looks at the developed world, see...

It feels that the psychobabble about ME has gained such momentum, that not only does PACE and the Cochrane reviews need retracting, not only does the NICE endorsement of GET/CBT need dropping, none a forgone conclusion, but also there needs to be an attitude shift in the both a large section of...

A further thought is that the following is not a logically justifiable conclusion. Even if evidence existed for the claim physical exercise caused no worsening in symptoms, it does not logically justify the claim that it would result in an improvement in symptoms. It is logically the same as...

Am not sure if I am reading it correctly as the section on treatments is not clear and I have not followed the various references up, but most of the studies cited specifically relating to therapeutic intervention in ME/CFS seemed to have looked at things like nutrition and the only one that...