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What an incredibly cruel proposal - and I say that as a forty-year veteran of this war against nonsense. Not content with using a biomedical grant on work that is anything but, these researchers want patients to expend their precious, precious energy attending coaching sessions where they will...

“Post-exercise” here means up to 30 mins after exercise, so this study has no relevance as a control group for ME PEM as usually understood, e.g. 12-48/72 hours. The authors are claiming that healthy unfit people are less tired half an hour after exercise than they were before it. This is a...

The study is funded by Sanofi. Maybe one day, companies like Sanofi will decide helping patients with ME is as lucrative as helping patients who have been misdiagnosed with ME. But first we have to undo all the harm done by bogus and flawed "research" into quackery.

To persuade psychologists and counsellors who find that kind of reasoning persuasive, including many psychologists giving CBT in the Talking Therapies / Improving Access to Psychological Therapies programmes, the ones performing assessments for insurers, etc. etc. I don't want to argue for or...

Isn't the point that when people who need help don't fit into the box marked 'How to help', some professionals will blame the people who need help, rather than blaming the box? By understanding that phenomenon better, professionals can be on guard against that tendency in themselves and others...

I am aware of a well-regarded, multi-award-winning science documentary company which thought this was a fantastic story and attempted to pitch this a few months back. They were knocked back in very definitive terms by all the obvious commissioning editors in UK broadcast television. My...

What I learned from this is that there are media outlets willing to publish articles with no obvious content or interest providing there is a clickbait hook (am I ill?) and a flimsy pretext (ME Awareness Day). The big charities need to look again at their media strategy and work out how they...

Perhaps DecodeME would consider publishing what they consider to be the core criteria for any project to provide data that can usefully be combined with their own. This would provide clarity for other researchers and reassurance for patients. Apologies if I posted this before - a little PEM...

If the idea is to detect whether patients' health is improving, we can ask what criteria a clinical assessment approach should meet to be considered valid. My first thoughts are: - will it collect accurate, relevant patient data, not susceptible to influence from clinic staff, family etc...

True. But "alternative ways of knowing" (the target of the article, i.e. epistemologies focused explicitly on social justice) don't have a monopoly on bad science. The "Emperor's New Clothes" incentives created by universities and grant bodies can make mainstream science just as unsound as...

I would be reluctant to take advice from a doctor who makes emphatic, evidence-free assertions and orders tests with no clear justification. Clinical judgement and experience have an important role - we don't want to replace doctors with AIs spitting out the organisational line - but a good...

As @Trish says this is a private business which aims to tell people "how to get the most out of the NHS" and uses NHS-like branding without any formal partnership. The root problem with this website's content seems to be the matching page on the NHS website...

The Guardian has belatedly seen the appeal of that “95% accuracy” conclusion. Jason spoke about this paper for the Guardian’s “medical mysteries” piece today on Long Covid, post-viral illness and ME in their Long Covid series. I notice the word “severe” didn’t appear in Jason’s summary. Did...

I’m not sure I knew before reading that piece that Martin Jacques has ME. Those older than me will remember better than I do the vicious ideological warfare in the nineties between Jacques’ Marxism Today (journal of the CPGB) and the RCP’s Living Marxism. I wonder if this personal connection...

“recovery” currently means developing the ability to manage limited energy, continuing pain, cognitive limitations, and ongoing flare ups in what has become a long term condition. "Recovery" here means "no longer bothering the NHS". It's redefining disease in terms of the effect on doctors...

Fairly reassuring, but I'm confused by this bit: Does this mean the team will be using Fukuda alongside CCC to identify M.E. patients? If so, that's an odd choice in a study that's supposed to be looking at PEM, and seems likely to lead to a lot of overlap between the "M.E." group and the...

@lunarainbows @MEMarge I think an ME Hospital Passport is a really valuable idea. I am on the severe / v severe boundary and any disruption to my routine dramatically increases my care needs with a huge impact not only on my health but also on those caring for me. The last time I was admitted...

I don’t think we have a basis for identifying a separate disease, but I do think there needs to be more research into why some patients progress to severe and very severe symptoms some years into their illness. In my own (N=1) case, a bad episode of PEM provokes ongoing deterioration that...

@PhysiosforME Sorry about the delayed response - I'm only strong enough to post very infrequently. It's interesting to hear that AfME haven't been in touch with Physios For ME about AfME's physiotherapy offerings. I wonder how the issue of AfME's physios offering a quasi-GET approach of...

As @CRG points out, the right route here is probably a query to the SMC's advisory board about SMC's response to the views expressed by its Chief Exec. - Does the SMC agrees with Fox's characterisation of reputable scientists with whom Fox disagrees as analogous to Nazi collaborators? - If not...