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@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...

A remarkably sweeping statement that ignores a significant ammount of research literature, patient survey evidence, the patient experience and the preferred definitions of the condition. [added - By definition ME/CFS involves post exertional malaise, which is a worsening of symptoms following...

The NIH did provide a fairly large grant to the UK ME/CFS Biobank this year, see https://www.meassociation.org.uk/research/research-projects/uk-mecfs-biobank/

My feeling is that the concerns raised about the exercise review could not be adequately dealt with and any resubmission passed through an apropriate editorial process in this proposed timescale. Presumably the resubmission is unlikely be subject to peer review before the end of November. It is...

Although PACE was pre-registered, they changed the design once the data was collected, so it was no longer as pre-specified, though the authors have claimed as they did not look at the data before the changes it still counts as a pre-specified study. Being pre-registered does not guarantee...

@Hutan a great first letter. Do keep us updated.

The apparent lack of any controls is an important issue. The most obvious control for an influence of female hormones on ME would be men with ME with matched levels of disability/impairment. Any serious study would also have female controls with a different but comparably disabling condition...

Mine too.

I did look at the Reuters site to try to post it under the article with my heartfelt thanks to Larun for preempting her discussions with Cochrane and leaking this travesty to the press and to Kat Kelland for taking her points at face value despite Cochrane's unreasonable contrary assertion and...