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Hmmmmmm. (X) Doubt.

Last visit to my GP, not sure why I bothered but it was mostly for excessive leg pain, we agreed that I probably do but it wasn't put in the record because it's pointless. I wonder how often that happens. I assume it's a lot. I pretty much assume it's the norm, with the weird obsession to reduce...

Just a narrative review so not really worth its own thread IMO. This was among the first disabling symptoms I had. It's barely discussed or acknowledged so far even though it's pretty common in LC. Probably the easiest symptoms to put to "anxiety". What a mess this has been, so many common...

There is no evidence for CBT "improving the quality of life" of pwME, it's way too vague and broad a concept to be evaluated anyway. This is just hopium. We need accurate things to be said, not people's wishes and dreams about what could be if magic existed in this universe.

Seems perfectly rational and directly related to the quality of services offered. Why would people adhere to useless treatments? That would be seriously bizarre. It seems to demand an irrational behavior while framing a rational response as faulty. Somehow the quality and effectiveness of...

Another fight for Covid long-haulers: having their pain acknowledged https://www.statnews.com/2021/12/02/long-covid-pain-not-acknowledged/ A universal problem but adds up a lot to the hypothesis that most, if not all, of the various chronic illnesses, including fibromyalgia, are immunological...

I can confirm, been following her from the start. Not always easy to express that on twitter, but she has the same objections we have. And in part because of how LC is dismissed as "just" that, when it's so much more than fatigue (and a different definition of it). Of course the problem is that...

The conclusion reads more like a vague mission statement from a tech start-up that gushes about "we're family" and stuff like that than a, you know, conclusion. What is "holistic" anyway? Seems about as definable as pornography. It all really seems to derive from the desire to have a healing...

Lots of pwME wear them all the time and have for years. It would be a selective factor for people who can't tolerate them but they're common enough that it doesn't make much sense to get blocked by this. Especially when the "treatment" is an exercise program.

I haven't read in-depth but am curious about how candid they will be about it to the patients, seeing how they define it here. The level of candor from these people is basically "snitch in prison trying to worm out of a bad situation". Then again PACE did the same, explicitly had the illness...

Hey, it's the new Malibu Stacy, it has a new hat! New hat! Well, no actually it's the same hat but it says "New hat!" on the box so it must be true! Either this person has no awareness whatsoever of the history of so-called psychosomatic illnesses and how they have been defined for well over a...

It's the level of evidence below "some people are saying". It's not even that, because no one would say that directly, as there is no evidence, instead it's vague hand-waving as if those things were being "considered" all by themselves, a passive thing one can only observe. It's not so much...

I am unable to find the thread for the NIH RECOVER initiative so have to post it here, or PASC, or however name the thread uses. https://patientresearchcovid19.com/open-letter-regarding-the-recover-initiative-to-study-long-covid/ Basically, the NIH needed oversight for this program. There is...

A randomised controlled trial testing the efficacy of Fit after COVID, a cognitive behavioural therapy targeting severe post-infectious fatigue following COVID-19 (ReCOVer): study protocol https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-021-05569-y Same basic formula as always...

This is kind of funny with how common it is for deniers to say that those "labels", like ME and fibromyalgia, are not helpful. Well, no shit they aren't helpful if they're systematically misused. Even the most useful things are useless when they're used incorrectly. Just look at the genius over...

Not much point to posting this other than there is clearly an organized campaign happening, uses roughly the same wording. The first sentence is identical. Carson is another one of the gang, so it doesn't seem to have much outside support, not visibly anyway. I'm sure there is more coming.

Our only hope is research. It has already been taken away from us. So this argument is offensive twice over. This is the result: millions of broken lives. I honestly can't believe this is happening right alongside Long Covid. Shows how we did not stand a damn chance of there ever being progress...

So NIHR is now hyping the null results of ACTIB, basically lying by omission in suggesting "benefits" when there were none. Clearly paving the way for the commercial venture.

This whole debate is absurd. There are things modern medical technology can see and understand, signs, and things it can't yet, which we call symptoms. That's it, that's the whole of it. The problem is that medical professionals have been speculating on what they can't see for, well, ever...

NICE be like: "let's have meetings and roundtables so everyone can have their say and present their concerns, surely everyone will see reason here about how the process was painfully followed". Meanwhile: Honestly at this point regardless of what this means for us, this guy needs sanctioning...