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Report in Guardian: https://www.theguardian.com/society/2020/nov/10/fatigue-syndrome-exercise-therapy-loses-nice-recommendation : I hope someone might be persuaded to write a letter to the Editor about harms (ie evidence from surveys and the lack of a system for reporting harms)...

This is very sad news:

Thanks. I don’t want to be too critical of Paul Garner as he’s said some helpful things about ME/CFS and I know how hard it is coming to terms with a poorly understood chronic illness amid all the conflicting information and advice that he will have been given. When I was first unwell the...

I see that S4ME is not a linked organisation (http://forward-me.co.uk/linked-organisations-and-associates.html): I appreciate that most people here don’t have much spare capacity but would it be worth enquiring if S4ME could become a linked organisation with a nominated member invited to...

I’m not entirely clear what this means. Are they suggesting that people who meet the diagnostic criteria for ME/CFS following suspected Covid-19 should be diagnosed with ME/CFS and therefore treated according the guideline for that condition? If that is so, it seems like a sensible approach...

There is a good summary of this study by ME Research UK (who were the funders): https://www.meresearch.org.uk/research/use-of-glucose-for-energy-production/?fbclid=IwAR2MI8sw9rgWJwCIkMUB--X9qdbtluU7HDTFsnMb4oqG__zSfIeBp4D7MqQ The MERUK summary concludes:

Yes, but wouldn’t it be great if the ME Guideline didn’t just copy the same mistakes that are made with guidelines for other illnesses but actually alerted people to the problems with bad research in therapies for all illnesses – and helped to raise the standards of all guidelines.

In one study Chalder and colleagues found that people with MS who had CBT were less fatigued than healthy controls: https://pubmed.ncbi.nlm.nih.gov/18256342/ @Tom Kindlon referenced this study in his response to Cochrane review of exercise...

Thank for the blog @dave30th. You write: It may be harder to make the case that PACE-type CBT is harmful, but the psychological harms should be obvious to anybody who accepts that ME is not perpetuated by unhelpful beliefs – particularly as CBT is a psychological intervention designed and...

Call me an old cynic – and I appreciate that you know a lot more about this than me, Adam – but I would be surprised if the eminent members of the BPS lobby haven’t got a pretty good idea of what the new Guideline is going to look like. They seem to have a pretty strong omertà, and the pro...

For anyone who missed it: No response from SW of course.

YES. This is the point, which needs to be reiterated again and again and again. What BACME [edited to correct acronym] needs to explain is why they are rejecting the inflexible approach? Do they acknowledge the problems with the RCTs? Do they accept the validity of the evidence of harms? What...

The above link states: “This has undergone editorial and peer review as a new submission. It has been published with the DOI http://dx.doi.org/10.1136/bmjpo-2020-000797, and clearly links back to this retracted version so that the history of the paper can be seen.” Clearly links? You did well...

No reply from Prof Greenhalgh.

Only mention I found of ME/CFS: The conclusion states: Unique? As far as I can see there is no explanation of what the multi-disciplinary rehabilitation services should look like. This (from Box 1) doesn’t really tell us much: I couldn’t see any mention of pacing or PEM, which is odd as...

Eminence?

For some reason Professor Greenhalgh, who appears to be taking a lead on long-covid, has deleted her tweet congratulating Dr Gerada on being made a dame so I’ve attached a screenshot. As far as I’m aware she still hasn’t made any comment on the similarities between long-covid and ME/CFS, or...

Encouraging to get a re-Tweet from Jane Garvey (presenter of BBC Woman’s Hour):

Just to clarify, further to what I wrote above, I completely agree with Tom and others on this. If someone meets the case definition of ME/CFS then they have ME/CFS, whether their illness started with Covid-19 or anything else. I understand why such patients may look at the way people with...