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I share your concerns, but do think we should be encouraging people to ignore the problems of the definitions from NICE which prejudge the issue and to complete the form.

One of the questions asks for part of your post code, so this should only be completed by people resident in the UK which is a shame.

I have now completed the questionnaire and do feel it is useful, though with CBT it avoids addressing the the issue of CBT as a management tool as distinct from CBT aimed at treating ME/CFS. Which means that it either risks throwing the baby out with the bath water, in that positive management...

I should add that Forward ME does not endorse these definitions:

I started to look at the Survey and was concerned about the descriptions of both CBT and GET as 'evidence-based' seemed to be prejudging this issue and potentially biasing responses. Also the description of CBT says This strikes me as being misleading about the reality of CBT in different...

There are additional problems with PACE, including use of the Oxford criteria (no studies based on the Oxford criteria are relevant to ME/CFS), and including outcome switching, sending a pro GET/CBT newsletter mid study to participants that represent research malpractice all of which surely...

A rather depressing thought for us in the ME community in the UK, as though some of the BPS cultist are at retiring age, there is still a number of proffessors (deliberate pun) in their forties and fifties. Can we wait another thirty years to see any significant improvements in UK science and...

I forget the source, but wasn't there a study suggesting that the rate of misdiagnosis within even patients seen by specialist CFS Services might also be as high as 40%. It does not inspire confidence in these services.

When I was seen at a UK CFS clinic they insisted I had a consultant diagnosis before they accepted the referral from my GP; at the clinic I was only seen by an OT. Though this was a number of years ago. It seems variable whether the clinics have any specialist doctors involved with seeing...

I would have liked to see an option on understanding the negative consequences of extertion and that exercise is generally counter indicated. Though one could argue that this should be understood under the 'treatments available' option, we need to know that doctors understand that exercise is...

Have only read once David Tovey's response to Caroline Struthers' complaint about the Cochrane Exercise Review, so far, and find it very confusing if not contradictory need to read it again when my brain is functioning better. My feeling is that he is trying to keep everyone happy and defend...

Cochrane seem to now have decided that ME/CFS will be moved from the Comon Mental Disorders group, though are not saying where we will be moved to: Source Blog post by Caroline Struthers containing David Tovey's response to her complaint to Cochrane about the Exercise Review, see...

A useful piece, thank you @dave30th . It is interesting to look at the SMC back catalogue of press releases and briefings in relation to ME over the last few years. Until their excessive lauding of this Kings' interferon study last month their output was almost entirely devoted to extoling...

As pointed out in the thread that @Sly Saint links to in the above post, the Bristol Randomised Trials Collaberation includes Crawley's MAGENTA and FITNET-NHS trials as current examples of good research practice. So the Bristol Collaberation has a lot of questions about Prof Crawley's previous...

I wonder if it would be better to present this as two separate questions, one about frequency and one about impact on the ME rather than giving lots of options mixed together. Obviously that does not pick up any interactions, but given the smallness and selective nature of our sample, how clear...

I had thought we had done a poll on whether people had less, had the same or had fewer colds and flues following the onset of their ME, but I can not find it. We certainly have discussed this before. There definitely seems to be a subgroup that have an hypo active immune system getting every...

This does raise questions about the effects of the isolation and reduced sensation and reduced opportunities for intellectual engagement that goes hand in hand with severe ME. Although the psychological impact of ME is very different, at the same time as my ME was at its worst, the wife of my...

I just looked at this link and noted the phrase "He is actively engaged in evidence-based medicine". Why does my heart sink when I read the phrase 'evidence-based medicine'? It seems to invariably mean bad and unreliable evidence.

Is this a signal for @dave30th to write another email to the BMJ?

As well as the issue of picking out the balance of citations that are critical, as is probable with a significant proportion of the PACE ones, should we be giving studies using the Oxford criteria false creditibilty as referring to them as ME/CFS studies? Surely we should only refer to them as...