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PS: To contradict to my own earlier post slightly, longer follow-up times might be less reliable in recently diagnosed people because of adaptation. Two or three years after diagnosis with erosive arthritis my function had improved even though my impairment was worse, because I'd re-learned how...

I agree about not using these measures on their own, but the reliability of subjective outcomes could be improved by, as @Hutan says, following triallists for long enough. Outcomes at 18 to 24 months ought to be much reliable than at two or three; if a treatment has improved symptoms, patients...

From @MSEsperanza: Further to the question about the term "outcome assessor" discussed above (starting here: https://www.s4me.info/threads/basic-questions-on-terms-and-methodology-used-in-clinical-trials.30316/#post-445244 ) Quote from the Cochrane Handbook: 3. Who is the outcome assessor...

There's only one difference between the pain I get from eating sugary food* and the pain I get from PEM. The former doesn't require overexertion, starts shortly after eating, and tails off after three hours. The latter does require overexertion, is delayed, and lasts days. The same burning...

Oh, that's horrible news. It's about time we had this sorted, no one should have to live like that. :(

There also has to be a discipline in online sessions (only one person speaking) that's completely different to what happens in conference breaks. People coalesce into small conversation groups, and they also overhear snippets of the other conversations going on around them. It's not unusual for...

I wonder if it ever occurs to these researchers that they'd be a lot more use to society if they went to the pub instead?

The level of judgement in this ... :rofl:

That's the interesting one, isn't it. Utility and reliability of a test, and wider acceptance of it, are different things. It's notable how often clinicians working with contested diagnoses are accused of dubious inventions that in another context would be called scientific advances.

No, it can never be that. It's reasonable to explore whether there might be explanations for the behaviour, it's reasonable to offer advice, information, and encouragement, it's reasonable to ask whether the patient would like support or would prefer to revisit it at a different time. But if...

So in the motivational interview, the patient compassionately and empathetically helps the professional to explore, understand, and accept the problems that are holding them back from doing their job. Do they say what the pay rate is?

I guess it'd be a lot clearer if they weren't present in samples from a control group processed at the same time. Haven't the energy to read the article properly, so I'm not sure whether they did this.

I've been asked to do the HADS numerous times, and it's only just struck me that I've always based my responses on the assumption I had the energy to enjoy things (which I do for some of the time). But that might be because I recognised it as a depression scale, and I know depression's not...

I'm glad you got to try it, @Shadrach Loom, and I hope it hasn't floored you for too long. Scooters aren't great for pwME, are they. There's nothing to support your arms and you torso, or stop your legs from flopping about, so you burn through a lot of energy really quickly. I've used Trampers...

It'll be drive-thru CBT next.

I think the nearest I can get is believing that the experience of some symptoms might be influenced by psychological factors, but that's a very long way from a whole condition being psychosomatic in origin. Anyway, in a world where we know that parasites can chemically influence their host's...

Yep. And continued care (for everything, not just ME/CFS) being contingent on the patient's co-operation with said coercive approach.

The Peak District National Park also has Trampers at some of its cycle hire centres.

I don't think that's a safe assumption, and it's probably best avoided in debates. Until someone has studied it, we don't really know.

90 million people? That's a staggering number. Reduced cerebral blood flow doesn't sound like great news, either.