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How, specifically?

It's amazing what these people are willing to do to patients just to save the NHS some money.

I've been wondering about this too. Maybe they saw how successful SW and Crawley's approach to career-building has been. If these people had gone into internal medicine or something, they would have been a nothing nobody that no one's ever heard of. But by spotting a niche very early on - a...

Any article that mentions the three p's is BPS. No one else formulates a diagnosis in this way, not even psychiatry.

Low body temp is correlated with PEM for me and when I was severe my temp was low most of the time.

They put me on the same drug 20 years ago and my reaction to it was as you describe because, in hindsight, the issue was postural. I think a lot of these long covid patients will find themselves being treated for "anxiety". The average doctor really doesn't know anything about this stuff and...

Certainly possible that people are gagged from speaking out. That was a horrendous case but what stood out for me at the time was that it seemed unusual unlike in the UK where families of kids who can't attend school due to long-term illness are subjected to this sort of terror all the time.

Thank you for bringing these patient reports to our attention. Those are incredibly disturbing posts which to my mind discredit this retrospective chart review. It would seem, based on these reports, that at least some patients attending that clinic feel under immense pressure to say to this...

In other words, there are no papers showing what it does at 0.25 mg.

How do we know this? Where are the pharmacodynamic studies of these near-homeopathic doses? I'm not talking about "low dose" aripiprazole as understood in psychiatry, I am talking about these ultralow doses being used in ME/CFS.

I also get the impression that things are worse in the UK. There is a lot of pressure in the US to never take days off, a toxic cultural belief that every problem has a solution and every illness has a cure, weird lack of worker protection laws etc. but at least in the US the healthcare system...

If people are claiming positive effects from very low doses, does it not logically follow that side effects could occur at those same doses? ME patients are very sensitive to medications.

Years ago Stanford affiliated folk were enthusiastically pushing antivirals, then a gout drug, then naltrexone. Each was claimed to help many. Of course none of these treatments do anything beyond wishful thinking.

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...