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I strongly agree with you, Ravn. We need to shift the research from why fatigue happens, to why PEM happens. It's the cornerstone of this disease.

Low grade neuroinflammation. In interesting paper is Broken Connections: The Evidence for Neuroglial Failure in ME/CFS (S4ME thread) An infection, another event, or an seemingly spontaneous change causes glial cells in the brain to become hyperreactive to changes in the body (including the...

No, nobody lied. The vaccine phase 3 trials showed very good effectiveness. Real-world effectiveness was lower due to: Immunity fading over time The virus mutating In late 2020, we knew these were possible, but not whether they'd manifest themselves. If we wanted to see before releasing the...

It's surreal to hear people claiming long Covid is psychological, then reading that even a mild Covid infection shrinks your brain.

I had one once. It was terrifying and I had some degree of visual disturbance that lingered for days, and resulted in an ER visit. It never happened again and I won't be that worried if it does, since I know the cause.

This is the deleted post you are discussing: https://www.reddit.com/r/Residency/comments/16zx2or/what_diagnosis_do_you_find_hard_to_take_seriously/

The authors of this paper and the patients who helped them have done superb work. I have several points of strong praise: The entire questionnaire is based around PEM, which acknowledges the most specific and disabling symptom of ME Unlike most questionnaires, the activities given are highly...

I just bypassed the paywall.

The main message of the article is that exercise is recommended for POTS, but it's dangerous if you have PEM. They also discuss how it's not the end-all be-all of treatment, and that anecdotally, most people find medication more helpful.

I will give my own contrasting experience to keep things representative. When I get blood drawn, they don't have problems with it flowing slowly or clotting. However, a decent number of pwME have similar experiences to yours. It's hard to tell if it's normal variation or if we're on to something.

This is wrong. It's better to be addicted to drugs than in terrible pain.

They really wanna do a treatment trial! Yes!

I have no idea what any of those devices are. We're living in the future. They make no mention of PEM, but that her diagnosis of ME/CFS was eventually removed. Maybe she didn't have PEM? It's an interesting paper nonetheless.

I would think ME/CFS is reversible with the right drug (which may not exist yet). Ron Davis also believes this. (He said in one of his research update videos). However, Dr. Nath is privy to the results of the intramural study, which has yet to be published. Perhaps he has strong evidence this is...

I would love that

The same people, pushing the same trash, with the same minimal degree of evidence, using the argument that we should give their nonsensical screeds the same weight as biomedical science in the name of "openness". Nothing new here, move along.

Lolno. I'm not afraid of giving myself PEM because I haven't got LTSE, I've done tons of things I wanted to do that gave me PE., and I've remained severely ill with what they call "mild" ME for 5 years now.

Someone needs to write a reply called "Anomalies in "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis"".

Wow, the CEO of AIM Immunotech takes LC and ME/CFS very seriously. They're clearly devoted to testing Ampligen in LC because they see it as a major potential market.

Restricting participation to people with diagnosed ME is the right thing to do. If this works out (half seriously) we can always do a DecodeLC study later.