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and that the symptoms can be experienced as disabling”. Now that is patronising spin.

Because having unexplained seizures, and having to deal with moronic psycho-babbling pseudo-explanations about it from doctors, could not possibly be a source of anxiety and disruption in relationships?

Yep. There should be zero tolerance for this abusive fraudulent behaviour, and it should be very public too. Name and shame and permanently blacklist.

Not too much of a burden then? Just asking.

Which is ironic, considering one of the arguments from the BPS club is that (uncontrolled) PROMs should be given greater epistemological status. Or at least, PROMs that report a positive result. Any reporting negative results are not welcome, of course. coughactimeterscough

Add me to the list of those unimpressed by this 'case study'. This was no accident. :grumpy:

I think this is very important: The response is not linear. In one sense the most important management tool patients have is learning to stay within the relatively linear section of the response curve, and avoid entering the highly non-linear section, because that is when the trouble really...

I really want to see the hard evidence for that claim. :grumpy: Without doubt the single most important management tool we have at this point. To the extent ME can be managed, of course. (I would use the term activity instead of energy, but same thing otherwise.)

One could also imagine that he is being managed out, in a somewhat face-saving way.

This. The whole notion of a 'baseline' is seriously distorting understanding of ME.

True. But it can put an upper limit on the size of any placebo effect, including ruling it out completely if the placebo and no placebo no treatment arms have no significant difference.

mumblemumblehandwave*biopsychosocial*mumblehandwavecough

Good. But how many of those trials also had a no treatment, no placebo arm? ––––– Placebo effects are not nearly as powerful and long-lasting as the authors conclude. The placebo/nocebo effect has yet to be demonstrated to have sustained clinical significance.

If it doesn't work, and especially if it hurts you, then it is your fault.

They do the same with the no-nap advice for ME patients (coz 'sleep hygiene', apparently). But half the world naps. It is completely normal and non-pathological. This. Their whole act is built upon arbitrarily psycho-pathologising normal behaviour and responses, devoid of context and history...

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. And the evidence for the efficacy of this approach is...? I mean, you guys have had 3...

That Ioannidis chap is proving a mixed bag.

The shameless grift continues on without restraint or care or accountability.

Straight fraud and cruelty. These people are a fucking disgrace. :mad::mad::mad:

If we ever get a clear biomarker profile for ME, I think it quite likely it will be a much more common problem than we currently believe. Good point.