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In addition to the excellent points made by @Utsikt and @Jonathan Edwards in response, who said anything about doing nothing? Not me. So that's a strawman argument which I'm going to park until we deal with the argument I actually made, which is that severe patients should not go near a rehab...

For anyone who is not familiar, these immortal words were how a supervisor of the nurses who delivered the treatments in the FINE trial characterised the nurses' attitude to the patients at times: It appears in this paper: https://pmc.ncbi.nlm.nih.gov/articles/PMC3259041/ Peters S, Wearden A...

That's how the researchers interpret it. But because of the reliance on subjective measures in unblinded trials, and the dismal performance on more objective measures, the most justifiable interpretation is that people in the GET and CBT groups were sufficiently enthused that they temporarily...

You're right, it is important to be accurate in claims. What you say is correct, but what people on here care about is whether the statistically significant difference between groups that existed at 52 weeks was maintained at long-term follow-up, and it was not. So what @Trish said was...

Sure, and thank you, @forestglip for creating the thread. I changed the first sentence minimally so that it would make sense in this thread. @Joan Crawford directed me to the Wechsler et al. 2011 asthma paper being discussed on this thread. It illustrates the problem with subjective...

Speaking of @Joan Crawford, she directed me to this asthma paper which illustrates the problem with subjective outcomes better than anything else I've seen, and demonstrates that yes, unblinded studies with subjective outcomes are worthless for telling us whether the interventions being trialled...

Just a side note on this point, while it is often described this way - as something they planned to do and then "dropped" - the trial management group meeting minutes tell a different story. They planned for actigraphy as a predictor, and then considered making actigraphy not just a predictor...

Right, so in RA papers you can see at a glance whether selection bias might be affecting results? As always, the devil is in the detail. This is the detail of Fulcher & White's selection: In Deale et al. 1997: They get points for consecutive referrals. @Hutan , here's the detail of that...

I have often wondered about these early studies. Fulcher and White 1997 is similarly promising - the exercise group had a 20 point increase in SF36 PF score at 12 weeks (compared to 8 point increase in the control group). Compare this to the GET group in PACE who had an increase of about 11...

That correlation relies on these three questions in the CBRQ-18: The problem is that those questions will be answered similarly by these two groups: A. people whose symptoms are made worse by physical activity/exercise, and B. those whose symptoms are not, in fact, made worse by physical...

I have just ordered these earplugs and will follow your instructions. One of my ears objects to foam earplugs now, so I can only wear them briefly. Maybe it will accept these. Like others I need to wear both earplugs and noise cancelling headphones for real noise. I call that "double noise...

Stumbled on this review by Newton's group in a folder on my computer: Rutherford G, Manning P, Newton JL. Understanding Muscle Dysfunction in Chronic Fatigue Syndrome. J Aging Res. 2016;2016:2497348. doi: 10.1155/2016/2497348. Epub 2016 Feb 22. PMID: 26998359; PMCID: PMC4779819...

I bought a Louise Hay book. Initially it was in the pile for the second hand book shop. Then I fished it out and put it in the recycling bin. I really didn't want anyone else to read it, ever. There was a table at the back where she provided her view of the emotional reasons behind a load...

Here's figure 4 from Jones et al. 2011 for anyone who is interested. This shows pH at rest (a) and after each of 3 bouts of plantar flexion exercises (b), (c), (d) separated by breaks of 6.5 mins/390 seconds: You want to look at the black "Norm CFS/group 1" bar compared to the white controls...

Yeah, they did two things, a fitness test, and then, 4-6 weeks later, 3 bouts of plantar flexion exercise, albeit in quick succession: I'll email you a copy.

Have a look at Jones DE, Hollingsworth KG, Jakovljevic DG, Fattakhova G, Pairman J, Blamire AM, Trenell MI, Newton JL. Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study. Eur J Clin Invest. 2012 Feb;42(2):186-94. doi...

I'm so glad you said this. This is something that really irks me in media representations of illness. It makes sense in some contexts, for instance, if you go for routine screening, feeling perfectly healthy, and find out you actually have stage 3 cancer. But in conditions like ME/CFS, the...

You're right, it's not simple. Are there studies looking at harms associated with getting tested and not getting tested? If so, do they shed light on how common debilitating psychosomatic illness is compared to the harms of getting tested? I.e. can we establish how clinicians can do least...

Thanks so much for transcribing this as I really wanted to know what she was going to say about Huntington's. She's using this case as an example of psychosomatic illness, and it's a good one, but the real lesson is that people with the Huntington's gene who don't want to be tested should be...

Exactly.