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My main problem with long covid and ME/CFS advocacy these days is that much of it revolves around clamouring for more allocation of resources and supposed lack of access to healthcare services. But staying as far away as possible from the medical system may be a good thing in this instance...

Exactly. Was the dystonia REALLY the presenting complaint in these patients? Or was it one of myriad symptoms they have but since it looks “objective” (unlike something not readily observable like fatigue and pain), the doctor latched onto it. I am noticing a huge swell of diagnosis of FND on...

It looks like establishment “scientists” are already laying the groundwork for controlling the media narrative when the tsunami of new disability claims hits them.

It sounds to me like they are disabled by their ME/CFS, fibromyalgia and other primary problems. The dystonia is just what landed them in a neurology office, probably because the GP was impressed by it.

Well said. If they call this sad state of affairs progress, I’d hate to see what they’d consider stagnation.

Most people seem entirely influenced by media narratives. In recent months I've had some interactions with doctors who have for the first time ever acknowledged the gravity of my illness after totally dismissing it for years. Why? Because they saw first-hand the effect of long covid on their...

Some posts on this thread have been moved from the vaccination experiences thread and the long covid thread. Note also there is a separate thread here for discussing the science of the vaccines. We've also retitled the thread to broaden its scope from just Covid vaccinations...

Obviously if you are locked up in a concentration camp and are taking in fewer calories than you need you will lose weight. This trivial observation has nothing to do with free-living individuals in the uncontrolled environment of the real world where decades of research shows that people in...

The three peaks in 2000, 2009 and 2012 coincide with economic crashes, recessions and/or sovereign debt crises. In every recession many people lose their jobs, and some of these job losses are permanent. Some of these people end up on disability.

I know a guy who took part in a clinical trial of this drug for diabetes several years ago, years before this trial for obesity was published. He has battled weight for years and remarked that he was surprised to discover that it was the first thing in his life that got rid of his constant...

This guy is so lucky to have recovered from his postviral fatigue syndrome. He has no comprehension of just how lucky he is. Those of us long haulers who have had periods of remission, sometimes lasting YEARS, know that the rug pull can come at any moment and you can find yourself sicker and...

Completely agree. Also, psychotherapy trials should be at least single-blind. There is no excuse not to at least blind the rater who scores outcome measures such as observer-rated depression scales. Also, better control groups are possible. Instead of waitlist control or treatment as usual (aka...

Pretty astonishing claim, for which there is no evidence. I have seen Stone et al mention the 30% figure in the context of new referrals to neurology clinics and how poor neurologists are swamped by these nonpatients. These sorts of people seem more interested in blame apportioning...

Pretty ironic seeing one of Lancet’s subjournals publishing an editorial calling out the unregulated nature of psychological interventions. https://doi.org/10.1016/S2215-0366(20)30414-4

Every time I get disheartened about how bad thing are here in the Anglosphere for PWME I see an article like this and realise things can be MUCH worse in many places. I find that the society I live in is too passive-aggressive and hypocritical for people to just straight up hurl abuse at me like...

Brutal. My best wishes to patients in Japan.

What they are implying here is that these people are somatisers.

Spot on. I think the ethos of western can-do individualism plays a role here. Anything bad that comes your way is probably your fault because you didn't take care of your health. You can achieve anything as long as you pull yourself up by the bootstraps. You can be anything you want! (Anything...

Yeah, this makes no sense. Recruiting sick and healthy participants for studies which are of no direct benefit to them is hard but not impossible. I’ve done it as have millions of other scientists despite not being allowed to offer financial incentives where I am. I find it very hard to believe...

There is a cult of exercise in our society. People have been led to believe it has magical healing properties. One of the reasons ME/CFS is heavily stigmatised is because we tell doctors and ppl in general that exercise makes us worse.