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Don't think ME has a specific effect. Definitely not like the video above of a specific muscle disorder. Definitely though in the way that being very unwell or sleep deprived does. A sort of slackening of muscles that then turns into a stiffness as it's its too much effort to wriggle free from...

What does 'task specific' mean?

What would be the measurements to know if you're over it?

Awful!

Thanks for writing Jonathan. I'm guessing this reply didn't put your mind wholly at ease.

Yeah. We've been circling the drain for decades. The pull of desperation keeps us here. But if we settle for being subjects for opportunistic profiteers, what else can we expect? Some standards. The bare minimum. It's beyond time.

Yeah.

Good argument well put Andy. I also found JE's argument in his paper persuasive. Do however disagree. CFS has to go. The confusion and creation of confusion around this term and Chronic Fatigue along with chronic fatigue, is more than unhelpful it's extremely destructive. To the relationship...

Sold.

In England I'd say not. I can get a full blood count whenever pretty much but that's it. Thats of course useful but its not sufficient. For tests that the GP could order- that don't require hospital consultant signs off- still doesn't mean that they will agree to if asked, and it's even more...

Or.... They principally require medical treatment for the harms done to their bodies, in an attempt to arrest the damage if possible or maintain life as long as possible. post-pandemic era. Why trust a researcher who fails on the fundamentals.

Bravo! Thank you @Joan Crawford

Yes. Thank you for the detailed messages above. I have enjoyed skimming and returning to re read sections. Such informative writing. Have a good rest I hope you can distract yourself.

I think we'd really know that our illness was diminished by treatment. We'd feel it. Feel better. But maybe we'd not have a way to know whether the symptoms we were left with were manifestations of ongoing disease processes, permanent damage from the disease process or another process. Aging...

Yeah that's not good for us is it? I think the difficulty is we don't know how much recovery is possible for any of us who've been unwell and debilitated maybe since we were children or adolescents. If we were mildly affected, then maybe with a cure or treatment for ME, we could have a decent...

We may have noticed this. While many have chosen not to, and those aforementioned could not possibly admit to as much. So for now, for purposes of securing funding for our necessary involvement supporting this project, we remain the patient.

shared biological mechanisms Scientists haven't actually discovered and validated yet what if any biological mechanisms ME might have. So I'd question that. I wonder what they mean at all by "biological mechanisms" in the context of all the other conditions taken together that wouldn't also...

Yes. It would be But I think the problem begins before lack of evidence for their practices. They're beginning something that they have no business even attempting. Where was or is the evidence that what they do is even worth trying to do? Who has a solid evidentiary basis for treating...

On the one hand this is quite the usual nonsense so ubiquitous that we're essentially forced to tune out of it to survive. On the other this is a simultaneous resurgence and retrenchment that could push us all the deeper into abandonment isolation debility and death. I'm thinking about our...

You're quite right.