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Seems to me that our best option at this point is to concentrate on pushing hard for a full sequencing study. Which mostly means getting the funding for it. Sooner rather than later, so we don't lose the current momentum. Maybe that should be the focus of our donation drives now.

Me too. I certainly get the sensation of widespread musculo-skeletal stiffness, as in difficulty moving, particularly when first waking up (which is when balance is also at its worst). Whether that is actually a mechanical phenomenon or not I don't know.

If the whole shitty ME/CFS saga proves anything, it is that a lack of direct experience of a disease process/state is all too often a major barrier to understanding its nature and consequences, and to finding solutions to it. Indeed, it can be highly misleading.

Can the pain field learn anything from the functional somatic disorder field? Sure they can. But that is the wrong question. The right question is what will they learn, and will it benefit patients? To which the indisputable answer is: how to get it even more wrong, and no.

I remain deeply sceptical that those reporting recovery are actually fully recovered, and not simply lucky enough to be among the minority who get sustained remissions.

When a typo is both hilarious and depressing. :) :(

I have never really understood what is meant by 'self', beyond the obvious and rather mundane point that all of us have unique combinations of major and minor genetically and environmentally driven variables. Even identical twins turn out at least somewhat differently.

ADHD, being one of the poster children for that definitional issue.

Count me among those unconvinced that the adult brain can reorganise to any major degree.

Unfortunately for many diseases the first symptoms the patient experiences are often vague generic stuff, like fatigue or aches or cognitive-sensory issues, which are too easily and frequently misinterpreted by clinicians as being of psycho-social origin. A friend of mine had gastrointestinal...

I have had a number of assessments by various clinicians, including physios, over the years and more than one has noted that I do not lack core strength or muscle mass, plus basic reflexes, coordination, etc. How does this fit into the critical deconditioning part of the psycho-behavioural...

Where's the accountability? Why are people like this so protected? :mad::mad::mad:

The real psycho-social pathology in ME/CFS. Entirely secondary, entirely avoidable.

Thanks. That is encouraging. :)

Still get night sweats sometimes, though nowhere near as often nor to the degree as during the early years.

Same basic stuff underneath. But LP is both more extreme, and more blatant about it. (I sometimes wonder how much damage Crawely did to her own reputation & standing within the profession with that study, and if that had anything to do with her retiring.)

Is it the specific individual signals or the overall pattern of them that is different?

We certainly do, including some in my backyard, like the Death Adder, though the invasive introduced cane toads (also highly toxic) have taken a lot of snakes out of the game, at least until they learn to not eat cane toads. We have a wide range of sometimes lethal poisonous/venomous animals...

In the early days, not often now, I have had the experience of extremely cold feet, including in the middle of a blazing tropical summer (and not in air-con). It was confirmed a handful of times by asking other people to touch my feet and they all said (without my prompting) that my feet were...

I have an interesting feature of ME in that the 24 hours or so before a flu or cold becomes obvious I usually (though not always) feel distinctly better, sometimes a lot. To the point where it has become a reasonably reliable indicator that a flu or cold is about to fire up. Once the flu/cold...