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Which I support. But social, political, and economic conditions also play a big part in those two conditions, I think. If you are looking for non-physiological factors affecting human health, then political/social repression and exploitation, physical violence, and poverty – which are (or...

Then wearables which she talked about briefly and very dismissively as unreliable and not validated for ME. Well then the profession needs get to making them reliable and validated. Because inadequately controlled PROMS are not okay.

This.

I would like to see both tracking, and saccade, properly assessed. Along with a bunch of other dynamic stuff, like focus, pupil dilation, blinking behaviour, lubrication/tear production & composition, etc. Including any difference between the eyes (i.e. lateralisation). All properly controlled...

The summary of her lecture to 42 listeners: Since the cause of ME/CFS is not clear and there is no causal pharmacological therapy, i.e. no medication, ME/CFS should be understood as a psychosomatic illness that can be treated with behavioral therapy. This would mean that the psyche plays an...

If the primary goal of therapy is to (genuinely and sustainably) increase patients' overall activity capacity, and it should be (even Wessely and Chalder think so*), then it must be measurable by objective means. That is simply not up for negotiation in my view. I have yet to see a good...

All the best to you and your mum, Ian. :hug:

And be subject to so much defamatory and dismissive abuse for it.

A number of factors, including the lack of a research effort that is scaled sufficiently to meet the public health problem, has led to understandable frustration in the ME/CFS community. Lack of research effort is not the only major reason why patients are frustrated. I understand the need to...

Or within known biases and confounders in this type of research (i.e. relying heavily on unblinded subjective outcomes).

"I suppose we could study individuals with FND who are not anxious or depressed... but they are hard to find." Exactly. Emotional distress is at the core of these disorders. Let's face that, and its implications, and help everybody else face that, too. Again with the arbitrary assigning of...

This.

Performative marketing.

For example, antibiotics, which are not really amenable to that kind of titration and ramping to get to the baseline dose.

I think these need more attention. Pretty sure I have some form of disruption to the water cycle. I seem to process water faster than before, and have had a few bouts of some form of polyuria, even when my bladder is clearly empty, typically lasting a few hours. Whatever the opposite of...

And some pretty extreme prejudice, spilling over into outright bigotry and even a bit of hate.

I don't have an in-principle problem with questionnaires (i.e. self-report). But I have a major problem with how they are currently constructed, interpreted, and used, especially when used on their own in unblinded trials.

It isn't even that much. It is merely reporting that they feel a bit better.

+1 I agree that tactics and strategy have to adapt to changing circumstances. At least one order of magnitude. +1 We don't need large scale funding so much as consistent and well directed funding, that is nimble and can quickly start following up good leads. Though we certainly also do need...

Thanks for your efforts on this @Joan Crawford, and your like-minded colleagues.