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An important paper out from Switzerland - it's just a fairly simple survey of people with ME/CFS about their mental health, but very useful findings. From a team based in Basel Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in...

Yes, this is really valuable for advocacy. If the BPS people can't fix ME/CFS with therapies based on a psychosomatic paradigm, and there's no evidence that they can, then there's absolutely nothing to balance the considerable harm that is created by telling someone that their symptoms are...

But there is criticism within the literature of some of the conclusions. That paper @bobbler linked is helpful. e.g. They question the conclusions from the studies. [sorry, deleted a bit I need to double check] I think it's worth noting that some studies in the literature actually tested...

It's a sympathetic article, but there is the grasping onto unevidenced 'knowledge' and treatments that is typical of people in the early stages of coping with a poorly understood disease. With her role as a doctor though, the ideas she writes of come across as that much more credible. The...

A very fair point. Almost every site gets some stuff about ME/CFS wrong, and many get a lot wrong. Cort routinely gets stuff wrong - I think his uncritical analyses of many new papers is a significant cause of the ME/CFS community thinking that there is existing good evidence of many...

Yes, a few people (probably people like Crawley) make loads of money selling an app to health authorities. People with ME/CFS get given the app that tells them to find their baseline and then gradually increase their activity. It's less harmful than the face to face therapy as it's easier to...

For the ones that did fill in the questionnaires at 12 months: sounds like a process of adjustment to a chronic illness, with both less time doing vigorous physical activity and less fatigue.

From the discussion re 'intensity': Sounds as if they are suggesting that the problem was the frequency, with sessions too spread out.

Yes, possibly the 'intensity' doesn't refer to the number or frequency of the sessions, but instead the 'toughness' of the sessions. Maybe they are suggesting that they should have been less lenient with symptom contingency, and encouraged the young people to push through more.

Given the ridiculous conclusion, suggesting that the problem was just that the young people didn't get enough time with the therapists, I have to post this chart from Supplementary File 1 I can't see any trend of young people with 8+ sessions of GET doing better than the young people who only...

I was about to disagree, as surely a health system that is on its knees does not need to be wasting money on therapy that doesn't work, but here's the conclusion: Translation: we still couldn't make it work, but give us more research money, a lot more research money, and more clinical funding...

The numbers are the mean proportion of school attendance (e.g. 0.5 = 50% school attendance per week), then standard deviation. The double digit numbers are the numbers reporting school attendance. Young people who reported 'not applicable' are not included in the average calculation. So, no...

A report of markedly reduced testosterone in women with LC, somewhat reduced levels in men: Sex differences in symptomatology and immune profiles of Long COVID, 2024, Silva, Putrino, Iwasaki et al.

I've participated in a trial and then read in the resulting paper what was said about what the participants were told - and there was a significant difference with what I was told. What happened in practice in terms of what the participants were told and also, as you say, what the participants...

Yes, the two therapy groups weren't really different in terms of improvements over time. But also, relative to baseline, nothing useful happened as a result of either therapy.

They are still hanging on to the idea that CBT works, and the activity management is supposedly pacing. Their GET was symptom contingent. Their activity management does include 'pacing up', it is probably more accurately called graded activity therapy. They expected to provide 8 to 12...

I agree that the feedback mechanisms are poor - they need to be better. An ethics committee member won't be sent to prison for making a mistake but they may well be personally affected when a trial goes wrong though. For example, if a trial participant dies as a result of a new drug, and there...

I groaned when I saw this - Crawley, I thought, why can't she just leave vulnerable children alone and go skiing? But: So, blow me down with a feather. GET, even a lovely 'individualised flexible' version of GET, wasn't better than activity management. And neither produced any meaningful...

In my country, we have four regional ethics committees. Members of the committees are paid, although a member has commented that what they are paid amounts to much less than the standard minimum wage if you do your job reasonably conscientiously. It often takes quite a bit of time to really...

I'm interested in what the participants remember knowing about the experiment before they started. If they understood that they would get paid for two rewards chosen randomly only from the tasks that they completed, then I think it would be fairly easy to realise that you want to keep the...