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As far as I understand, HIV activists were campaigning against the lack of investment in research etc. They were not accused of threatening or harassing people who were doing bad research. It was probably untrue when they made the accusation. But I think that the accusations themselves, which...

It doesn’t detract from his point but, having looked at this more closely, I think Brian has conflated outcomes with studies in his summary. Most the the studies report more than one outcome so there are many more outcomes than studies – although some of the outcomes listed in the tables in the...

This is very much the sort of nonsense that celebrity GP Phil Hammond (who works in one of Crawley’s CFS clinics) has been saying for a while. Where are the clinical trials that provide evidence for this approach? (And God help us if we waste another decade on a multimillion pound trial trying...

Zugszwang. I came across this word in an article about something else recently, although I can’t remember what it was – probably politics/covid. I wonder if we were reading the same article.

My rapid response to the BMJ article on the draft NICE Guideline has now been published on the BMJ website: https://www.bmj.com/content/371/bmj.m4356/rr-0 There is also a very good letter by @Andy who makes some excellent points and uses the opportunity to publicise DecodeME...

BBC radio Wales: The Long Tail – My Coronavirus Recovery: https://www.bbc.co.uk/sounds/play/m000p75r Blurb: “Sophie Wilson is one of the thousands of people in the UK with ‘Long Covid’. She meets fellow sufferers and medical professionals in Wales in the search for answers.” One of the Long...

I agree with this and have just completed the survey. My concern is that there doesn’t appear to be any way to verify who is completing the survey – you don’t even have to give your name or email address. This means that people who are neither ME patients nor carers who have a particular agenda...

According to http://dradamgaffney.com/:

Supporting Patients Living with Covid-19 Long Term Effects Wednesday 9th December 2020 Virtual Conference https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/covid-long-term-effects Brochure...

I’ve just read @Jonathan Edwards ’s expert testimony (https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3). It is absolutely brilliant, and a devastating critique of the CBT/GET models of ME/CFS. Some highlights and comments: This is an important point which Jo...

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...