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This is very interesting. What kind of timeframe did they study for disease duration? Also were they able to define patients that said they were fine but had reduced their activity to levels to fit their capabilities, i recall there was discussion or paper on this (does this ring a bell for...

I'm not familiar with that one but the christian right is not an ally you typically want.

This is insane. I do want to know why they did this, there has to be some reason they would go out of their way to torment a family and try to kidnap a patient. It could be as simple as a doctor who feels aggrieved but it merits a full investigation IMO

Of course, thats why i called it informal. I wish it was not progressive "except for a minority" but starting with the conclusion that its not progressive except some then constantly moving the goalposts to maintain that conclusion is not cutting the mustard. GET studies in general seem to find...

Indeed, it seems from the informal poll its a minority that do not progress instead of the other way round. And to get the results they wanted in PACE they had to ratchet down the recovery threshold, not keep it static...

If when your recovered from PEM you are as functional as when you first got ME/CFS and can do as much before getting PEM as when you first got it then there would be no progression. It took me a long time and reading a post on S4ME before i could properly articulate how things worked, years ago...

This is what wikipedia says https://en.wikipedia.org/wiki/Progressive_disease It does not have to result in death to be progressive. I would think that if you get worse even if you stabilize later at a level lower then before the worsening that means it has progressed.

I have started a poll on this here: https://www.s4me.info/threads/has-your-me-cfs-progressed-at-all-since-it-began.5352/

Indeed, i'm going to start an informal poll Edit: done https://www.s4me.info/threads/has-your-me-cfs-progressed-at-all-since-it-began.5352/

That is a good point. Also building upon it will matter, if we prove a disease mechanism for ME/CFS it doesn't help much unless its translated into more knowledge or a treatment.

This is one i totally agree with you on This i also agree with, though i expect better refinement to get past this problem (but its still something to keep in mind).

True enough but its efficacy is not universal, for some people it apparently works but we would not all be functioning normally if it were approved everywhere. Its worth being careful not to give the impression that it will help most or all patients. Essentially we need to communicate that...

Thats my fault, i was working on it yesterday but have not got it right yet. Sometimes i get into a rut where i know what i am trying to say but my wording goes awol. On better cognition days i am a better wordsmith but those are come and go. I don't know if this is me or just an editing quirk...

Thanks. Its not deal breaking or anything but would be a nice step to skip. Perhaps as the admin you need to approve me or something.

Yes, i just made a change and it asked for it again

Is there a way to get rid of the captcha, i signed up for an account hoping that would do it but no dice

I agree, in fact that classification may have a PACE influence we are not aware of Edit: scratch that, it was decades before PACE was envisioned, my bad.

This is not the only field lacking in replication. I would like to see large scale hands removed replication I agree in the grand scheme (though far more then most of our annual incomes) its small but you did state "Replication costs nothing much" So replication teams that only do replication...

I agree but PACE classifies it as psychosomatic and we definitely disagree with that. For a long time without an official reason because we didn't know of the malfeasance. The WHO may not be acting maliciously but the best evidence we have says this is not primarily neurological, pyruvate...

Then we would have no replication crisis, especially in psychology where replication is even cheaper... I believe there is funding being given to replicate Mark Davis' results, if we could do that for free lets redeploy the money. Ok so where replication has failed then we definitely need to...