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Yidd-ish

The big plus of demonstrating the cost-to-society angle is the political leverage it brings. If the political class think mainly in budgets, then that is how we have to grab their attention. Show them how costly it is (and it is horrendously costly) to do nothing effective to deal with this...

Or worse, we will get re-classified as some form of FND, in order to completely disappear us and the whole shameful chapter from view and accountability.

It is a bit more than 'fatigue', FFS. But otherwise, definitely worth doing in principle. Loss of, or major reduction in both quantity and quality of sexual life, and all that entails, is one of the more painful and life-degrading ones.

I have no problem at all with doing everything we can to piggy back off LC in any (appropriate) way possible. We sure have earned it.

The primary endpoint was patient global impression of change (PGIC) response rate at week 12. Subjective self-report, and short term assessment for a condition well known for being long term, even chronic.

Being the underdogs, we have to be absolutely scrupulous in any of our critiques and claims, and never overstate the situation with biological findings and causal mechanisms. It sucks big time when our psychogenic opponents seem to be able to make any critique and claim they like, and never...

This alone justifies the use of economic measures, at least in Australia. You want important stuff done by the government here? Convince them how much it costs to not do it.

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.