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Ah, because great men are able to impose mind over matter quite easily. Especially when they are not being misled and misadvised by feeble-minded and neurotic somatising patients. It’s the rest of us who require some kind of intensive course to retrain our inferior brains. Hence the answer to...

Activist is one thing we definitely are not. We are inactivists. That is precisely the problem. If we were able to be active, we would likely have solved this problem years ago.

Good for Tessa Munt (Wells and Mendip Hills), who is the LibDem lead on the APPG, for rallying her party colleagues. And thank you to any S4ME members who may have been in contact with her.

The article uses NICE’s ME/CFS throughout. That comment uses CFS/ME for a reason. Also note the claim that the diagnosis has no therapeutic value. That is false. NICE guidance not to recommend GET is therapeutically important, because it is harmful to patients. GPs are likely to advise...

Given that the NHS has been doing its best to gaslight people that life with ME is “good health”, I don’t see any contradiction in some patients with ME reporting that. On the rare occasions when I’ve been able to access healthcare, the conversation has gone like this: - Do you have any health...

The focus on symptoms is also unhelpful. Epistemic gaslighting is at least as traumatising: the insistence that you don’t know from experience that your symptoms are exacerbated by exertion, that you don’t know from experience that if you push through you will get worse not better, that you...

Connoisseurs of bizarre ME-paper non-logic?

Like others, I thought this was just unfortunate use of English. I understood “this phenomenon is of greater interest for people affected by ME/CFS and FM” to mean “this phenomenon is of greater interest to researchers in relation to people affected by ME/CFS and FM”. Many researchers have a bad...

The challenges from diagnosis to treatment? There are no treatments. ME/CFS is an often devastating illness for which there are no effective treatments. That is what has a “dramatic impact” on people’s lives. The self-aggrandising nonsense from these people is astonishing.

I hate to tell you this @rvallee but I promoted ChatGPT and it came up with this at number 7. (You are a health psychologist. Propose ten different interventions to stimulate patient creativity which could be tested in a study of how greater creative expression may lead to patients with...

This is a substantial result: that an entire field is suspect, with selective outcome reporting in a whopping nine out of ten papers. It’s disappointing though that this is not in a journal more widely read by the doctors and guideline writers who recommend bogus interventions as a result of...

All these years and the NHS still can’t deliver a workshop that gives the name of the illness and the management strategy as set out by NICE. And we’re pleased because it’s significantly better than expected.

That’s why what is needed is to expand the programme to more patients…

It is a world-beating intervention - at achieving its purpose, which is to reduce demand on the NHS by getting people to stop bothering doctors. This “treatment” has the unusual quality of working whether you participate or not. If you attend your sessions, you stop bothering doctors because...

Lots of good stuff in this paper. None of it surprising to S4ME members but still good to see it in the BMJ’s Journal of Medical Ethics. Also touches on MUS in ways which are relevant to ME: The recommendations at the end are thought provoking though perhaps not sufficient for the...

To state the obvious, MEA are not legally obliged to retain the minutes for Nov 2014 past Nov 2024 (ten years). But they would be well advised to search through their electronic and physical filing cabinets for a copy of the 2014 AGM minutes. Without the minutes, the MEA cannot evidence their...

I get myoclonus in any/all of my limbs when crashing while severe. I had moderate ME for many years and never had that symptom. When the myoclonus started as my symptoms became severe I was sufficiently alarmed that I went to the GP - very unusual for me - to confirm it wasn’t a separate...

So they started with a group of patients the researchers believed to have “central sensitisation”, then performed tests which showed that fewer than half of them did have a heightened physical response to stimuli, and so they decided to administer a questionnaire instead in which anyone with...

New year, new blog title?… For me - absolutely you should change the name, and I’m excited you’ve opened up this conversation. The current name lands with a relatively small number of thoughtful, curious people who are focused enough on ME that we have taken the time to get to know your ideas...

I’ve been thinking about Cochrane’s motivations in cancelling the update. Of course in a way it doesn’t matter. This is S4ME, and our focus is on science, not institutional politics. But in this case politics has successfully obstructed science, so we need to understand how that happened. Some...