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I agree that there are real dangers in using the 'reducing the health and welfare bill' angle, because that opens up the door to nasty dishonest tactics to achieve that goal. We have all seen plenty of that, and it needs to be handled carefully. OTOH, it is also a legit and objective measure...

So, more just a difference in the timing of the decline – a delay for healthy controls – than a difference in the type or shape of the decline? Meaning patients are just hitting their limits much sooner?

There is a profound psycho-social pathology in play for ME/CFS patients, alright. But it is secondary and contingent, it is not inherent to the condition itself, and is inflicted entirely by the medical system. It could be stopped overnight, if the profession wanted it to be. This. There is...

I think there needs to be four classes of general outcome measures for any trial of treatment or management. In no particular order: 1. Income 2. Health and welfare use 3. Activity patterns (objectively measured) 4. Quality of life 1, 2 and 4 are straight forward enough. 3 needs not only...

I think there is a 'not' missing from that sentence. Otherwise, yes, there is a lot going on we don't have control over. It doesn't matter how carefully I manage my activity patterns, I still end up being knocked for six at random by unpredictable flare ups.

:D I'll take my laughs where I can get them.

Exactly. Their explanatory and therapeutic model has to assume we are delusional morons, incapable of figuring anything out without their expert guidance. As soon as that assumption is subject to robust examaination the whole thing falls apart.

This is a gross systems failure. There is no way the small group of hardcore psychosomatic fanatics at the core of this could have got away with all of it, for decades, without serious sustained support and protection from the broader governance structures, including outside of medicine itself...

I dislike the 'energy issues' conceptualisation of ME/CFS more and more. I really don't think it is energy depletion that is the problem. That does not add up to me. Why does reading a book produce the same (or similar) consequences for ME/CFS patients as going for a long walk? Reading does not...

Sometimes you just have to throw a bunch of half-plausible ideas at the wall and see what empirically sticks.

Yeah, I am coming up to 40 years in October. Basically my whole adult life. 2.5 years is a blip on that time scale. (Which in no way dismisses the plight of those having had it for that relatively short time, or any length of time.)

Exactly. Stop with the assumptions, and get to robustly testing them, or discarding them.

Definitely important. But... My experience is that PEM is a permanent feature. It is always there, all that changes is how hard it is cranked up. It is also a non-linear response, I think, which is part of why it is difficult to learn how to predict and manage. Even the best management of it...

The shorter programme is based on a new treatment model based on Acceptance and Commitment Therapy (ACT), where exhaustion disorder is seen as an existential crisis resulting from a lack of connection with meaningfulness. The more things change, the more they stay the same.

I don't see an issue with adding a little extra salt to your diet, and making sure you stay adequately hydrated. Beyond that, as with [checks notes] every other explanatory and therapeutic claim I have ever heard about ME/CFS, I await robust evidence.

Still not allowed to donate here in Australia. (Which I don't have a problem with. Better safe than sorry.)

That was my first reaction. There simply is no excuse anymore for anybody, let alone health experts, to deny there is an extremely serious problem with the general phenomenon of post-infectious complications, and the way they have been so persistently ignored and/or mistreated by the medical...

I have no doubt this problem has massively skewed and corrupted attempts to understand a whole bunch of health issues and their causes, including mental health.

Somebody gets it.

If you don't fulfil your end of the 'bargain' there will be consequences for your social credit rating, with all that implies. Not joking. That is where we are heading, NICE notwithstanding.