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Thanks to everyone involved in this important project. I’m sure they’ve been reading this thread so the arguments will probably come as no surprise. It will be interesting to see what they come up with. I hope it’s an actual response and not more of the same “you should be grateful and stop...

Yep. It makes me cringe every time I see it spelled out. When people in real life ask me what POTS is, I always just say postural tachycardia syndrome because the other name is tautological.

Because they don't believe that severe ME/CFS can result in gastroparesis. They are taught in medical schools and on the wards by their consultants that ME/CFS = all bodily systems are operating normally. So a mild case is imagining mild pain and a severe case is imagining severe pain, but it's...

I don’t have any experience of pregnancy but I will say nausea is a major ME/CFS symptom for me triggered by exertion. Very embarrassing in public especially. This thread is horrifying overall. Without even reading the original article I just knew some BPSer was going to say that it’s all due...

Frontiers type journals are major purveyors of this sort of “research”. I don’t read anything that comes out of such journals because the signal to noise ratio just isn’t worth it. So much quackery out there. The only real immunological finding that I know of in ME/CFS is TGF beta and that’s not...

They are willing to provide nutritional support for other conditions with unknown cause and widely believed to be "psychological" like anorexia and depression (the severe end). So why not us? What does lack of evidence on aetiology have to do with letting your patient die?

Huge if true.

Speaking as someone who has had so-called POTS for 20+ years, it’s important to be cautious with the medical advice out there given out by patient orgs and celebrity doctors. I’m not going to name the org but about 10 years ago they admitted on their Facebook page that a study found no effect of...

No one can articulate it clearly. It usually boils down to there being two broad types of brain rot: focal signs go to neurology and the rest gets carted off to psychiatry.

This is a great question, one that I’ve also grappled with. All of the main psychiatric conditions listed in the DSM (MDD, BPAD, schizophrenia, autism, various dementias etc.) are heritable, including the ones you wouldn’t necessarily expect based on folk beliefs/misunderstanding of the world...

Maybe they ran a more conventional analysis like linear mixed effect model and didn’t get the desired result.

I feel like they are reading this and directing this at us.

Overstating the biological evidence does us more harm than good. If you brought n=17 studies like the Nath one to a UK consultant they would laugh. The unfortunate reality is that the is NO replicated evidence of biological mechanism. If there were, we wouldn't be dying of malnutrition in NHS...

This happened to me where ART worsened my muscle deconditioning. However, after just a few weeks of doing my usual small amount of physical activity again, I reconditioned myself to the point of my "normal" ME/CFS state. Then I hit a wall where further exertion only made things worse again. I...

It's both constant and exacerbated during PEM.

Some years ago I did aggressive rest therapy for a couple of years where I did basically nothing, had no PEM and didn’t even leave the house. It made zero difference. I don’t think you can rest your way out of ME/CFS just as you cannot exercise your way out of it.

Come on man.

I've seen the attitude you refer to and it's very dangerous. You will still have ME/CFS afterwards, only without a house/car.

No resources are better than some resources in this situation IMO. The "long sepsis clinics" would just be handing out the same harmful rehabilitation advice that they give us and LC people.

Not surprising. There was a study floating around twitter recently on 20-year follow-up after Long SARS. Out of 50 patients in that study, no one had returned to their premorbid level of activity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9914492/