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I frankly don't mind this temporary attempt at segregation, ME is a black hole of criminal neglect and despair, it will lead nowhere anyway, but it would be fantastic if it lead to the acknowledged debunking, in fact, of the stupid "illness seeking label" trope that is widely cast on us. It is...

The irony of medical professionals rejecting ME, or even PVFS, because they reject a psychological explanation for their illness is predictable and illuminating. Especially the language: "this is real", "this isn't psychological", "this isn't just anxiety" and, obviously, "this isn't just...

Long Covid: What is it, what are the symptoms and what help is there for sufferers? https://www.itv.com/news/2020-08-12/long-covid-what-is-it-what-are-the-symptoms-and-what-help-is-there-for-sufferers Denial has consequences. No excuses for this failure. It's the same failure going back...

The doctors still crippled by Covid-19 six months after they caught it https://www.dailymail.co.uk/health/article-8782513/The-doctors-crippled-Covid-19-six-months-caught-it.html It mostly consists of short testimonies. Interesting to notice how typical they are to the ME experience, just...

Funny that, it's not anxiety. Where have I heard that? Doublethink is such a bummer.

‘It’s Not in My Head’: They Survived the Coronavirus, but They Never Got Well https://www.nytimes.com/2020/09/28/us/coronavirus-long-term-effects.html But muh secondary benefits of the 'sick role'. As much as they continue to be illuminating, that most reporting continues to be limited to...

MAIT cell activation and dynamics associated with COVID-19 disease severity https://immunology.sciencemag.org/content/5/51/eabe1670.full

MAIT cell activation and dynamics associated with COVID-19 disease severity https://immunology.sciencemag.org/content/5/51/eabe1670.full

And now to know where all that PACE money went. The last few years, some of the BPS gang have basically made the case that online versions of their stuff has the same outcomes as the most intensive highly-trained in-person versions. That outcome is null but still, same outcome. And the claim for...

We already know most people recover from PVFS, so it wouldn't change much here. If medicine were to acknowledge and deal with the fact that it is actually common to take months to recover from infectious diseases, it would still be a massive improvement. Right now medicine is in that weird spot...

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...