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This seems like an important issue to give attention to - how to calculate estimates of years lost to disability. You can't manage well what you don't measure. And, if you measure it wrong, the management will probably be wrong too. I hope patient charities will read this paper and consider...

I assumed that a cell had to have the Foxp3 and the CD4 to be a Treg. If it had Foxp4, would it be some other sort of cell? Have we had studies looking at the variation in cell markers in Tregs in ME/CFS?

It looks like any sort of therapy can be shown to produce a similar sort of benefit. Even 'mindfulness-based mediation' :laugh:. Is that where the participant and their body have a good chat with each other in order to resolve differences? ;) Sorry for copying so many paragraphs, but I find...

I just want to emphasise the point about this being assessed as not actually being a study requiring consent from patients. The authors claim they are trying something novel and unevidenced. They can't have things both ways. If it is novel, then participants should be asked to give consent...

Dropouts Of the 189 patients who were enrolled in the course (having accepted the CSS diagnosis), 135 filled out the end of course questionnaires and 81 (43%) of them filled out the questionnaires 3 months after the course. That's surely an enormous winnowing out of the non-believers and...

Just noting the ongoing disappearance of ME/CFS. Now it seems that you can have fibromyalgia with PEM, presumably meaning that the NICE Guideline for ME/CFS can be ignored. Just making up a conceptual model isn't the answer to this problem though. Time to move on from CBT it seems and offer...

This. No controls mean the results mean nothing much. Also, the usual problem of people who are skeptical of something called 'body reprogramming' won't go near this course, so you have a group of people who are mostly open to the idea of being fixed by thinking differently and expect some...

What's going on at the Lancet? Going by the abstract, the editing service is pretty bad. e.g. the first sentence It's a hospitalised cohort which isn't great for singling out the sort of Long Covid that we are most interested in. With the range of post-Covid impacts in this population and...

I can't access this paper. What do people reckon about the idea of Tregs not doing their job of controlling an inflammatory response to exercise properly in people with ME/CFS? What would prove that idea wrong? I have been interested in the idea of rhabdomyolysis as part of ME/CFS pathology...

Problems with cognition are termed 'mental health difficulties' In the next paragraph though mental health means something different (negative affect) because

Ugh Because suddenly developing a debilitating disease that has no treatment and that a substantial proportion of the medical profession* and people in general think you are just being a wuss about is not at all worrying? *mis-informed by papers like this that play up all the prejudices...

To play devil's advocate, it's a big ask of employers, isn't it? Accept the word of the employee that they have this disease that limits their productivity. And then make all sorts of changes that actually won't work for a lot of jobs and workplaces or that at least impose substantial costs. I...

Here are the latest numbers by country - 70 different countries, without counting the UK nations separately:

From having had three people in my family with ME/CFS (onset for all three at the same time, and therefore almost certainly the same cause, the same disease) and having had ME/CFS for nearly 11 years now, I observe that: * individual experiences with the same disease do differ e.g. impact on...

Information from new forum member ONG PEM: ... We are delighted to have joined this forum and to be part of such necessary and important initiatives for all our group of people suffering from Myalgic Encephalomyelitis. ... The Association of People with Myalgic Encephalomyelitis, PEM...

Yes, when researchers start reaching for the 'sub-type' idea post-hoc it raises skeptical thoughts. We've seen some pretty bad papers supposedly reporting on ME/CFS subtypes. That said, it is to be expected that cohorts of people diagnosed with ME/CFS will include some people who have other...

We've seen that particular recipe for generating positive results in ME/CFS trials from Japan before. I can't recall it being picked up by researchers in other countries wanting to make probably ineffective treatments appear good. I imagine it's because most researchers and health systems...

Oh, that does sound hopeful. My fingers are crossed that it works out ok.

I've just found this paper. I was in the study, I didn't know that the results had been published. I was in the 48 hour 2xCPET group. It's a really small study. Only 11 participants with 'ME/CFS' in total randomised to either a 48 or 72 hour repeat CPET. And we've since found out that one...

Great to have CFS/ME Associazione Italiana joining the campaign - the first Italian organisation to sign as a supporter. Grazie, Giada Da Ros. Thanks also to Sian at the World ME Alliance for her ongoing help to promote the campaign and to connect people.