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Looking good overall. I think the management is a bit understated. Unless I just missed it, it neglects most of the economic aspect of not being able to work. It's fine to self-manage but pwME simply can't do that without support, no chronically ill person can survive on hope alone. Disability...

'I had to leave the nursing job I love because of long-Covid' https://www.telegraph.co.uk/health-fitness/mind/had-leave-nursing-job-love-long-covid/ From the PACE trial manual: "The essence of CBT is helping the participant to change their interpretation of symptoms and associated fear...

Not sure what place this publication in terms of journalism has but people talking about it is probably a good thing no matter what. Front page. Decades ago I think ME/CFS made the front page of Newsweek because of the Lake Tahoe outbreak. How much could have been done if the sabotage hadn't...

That's what I meant. I'm not blaming the participants. It just reads too much like testimonials for LP where the participants are told their success depends on believing in it and their words reflecting that need to be positive. Pure tokenism in this case. There's a trend I noticed in clinical...

Post COVID-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy: a case report https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7502253/ Case report but nonetheless interesting. Thread for this paper is here: Post Covid-19...

Proponents of this approach often talk about how their stuff is beneficial with people who have other diseases, even though they rely on the same process that they use to claim it "works" with us, one we know to be fundamentally flawed. Cancer is a common one, even though the substance is...

Meanwhile in "stuff pwME have been saying literally for years and has fallen entirely on deaf ears": Rejecting reality and substituting your own is not serious work. The obsessive focus on fatigue has never made logical sense. Magical thinking is incompatible with science, part 2926296.

Haven't bothered watching. Some comments that the predictable stuff about anxiety and CBT/GET is there. I'm not expecting the RSM to do anything good so not surprising. Doubtful there's anything worth much here.

Not half bad. It's missing out a lot of the disease burden and overemphasizes excessive exercise as a trigger for PEM, missing out essentially on the severe half of the patient population who struggle with daily functioning, not even close to be able to even attempt vigorous exercise. The...

Those patient comments are very weird, they read insincere, almost fake. Whether real or not, they do not reflect typical patients, at best just tokenism participation. Not to be conspiratorial, it wouldn't even be the worst thing these people have done anyway, but there is a weird quality to...

I don't see any difference between this and the Scientology Thetans-inhabiting-the-body thing. It's literally the same idea, a deus ex machina without substance. How did such ridiculous ideas ever got taken seriously? Let alone continue to be. Emotions being stored in the body? Ghosts of aliens...

:thumbsup::trophy@:party: (before, and now, and for the foreseeable future) Dr Lambert was the primary research on one of the long Covid studies and has been quoted on many articles. Comment on that study...

That "in the past" line does not inspire confidence things will change any time soon. Bit like saying we had problems with pandemics in the past. True. But we very much have those problems right now. It's not just the "now" but especially the "ongoing" aspect that is the concern here. The state...

Hey I did that. Around age 2. And again around age 20. I have no idea if it's worth mentioning, I never did. Whenever I happen to actually have access to medical care anyway.

This whole field is a sick joke. All substance is irrelevant. Burn it all down and salt the ashes, there is nothing of value to preserve here.

Arriving at the arbitrary 6 months threshold...

As I suspected, some of the lowering numbers on the ZOE app are because many post-Covid patients have simply given up using it. In part because it still doesn't include many of the symptoms that have been reported for months, requiring manual input. And since no one knows whether this will be of...

Why indeed? We know why.

This is a wild grab bag of various unrelated things. Even an apples to oranges comparison doesn't give it justice. How is such a trivial evaluation worth being published? It basically amounts to a global evaluation of alternative medicine, all types considered. Other than the underlying...

It seems like the psychosocial aspects are completely superfluous here and basically past pain and accidents make it more likely that over time pain will become more painful. So basically low-level acute pain that does not resolve becomes low-level chronic pain then disabling chronic pain. So...