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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.

From a Workwell Email: This is approximately 160 km (100 mi) northwest of their location in Ripon, CA, meaning more people will be able to reach them. However, it doesn't mean much to anyone on the east coast who might want to get tested at Workwell. (Though they have Betsy Keller)

I also think they did a good job. They must have managed to recruit a significant fraction of all people in the UK with a ME/CFS diagnosis. There's an often-cited estimate that 250,000 people in England and Wales are affected, but I imagine most of them are undiagnosed.

This was the most-read article on Washington Post yesterday:

I share my experiences openly because it helps me feel better, and because it might spark change.

Yeah, medical records are extremely GIGO. I'll give you my favorite example. A neurologist said I might have a certain genetic disorder, and to see a geneticist. I asked my PCP for a referral for a geneticist, to see if I had this condition. They gave me a referral and then put it on my chart as...

Could be useful if effective but would be very difficult to prove any effect.

I don't have much to say. I just hope she is able to get to a better hospital or get care at home.

Psychiatry is absolutely, I mean, fundamentally broken when it comes to issues around informed consent. The minute a patient makes a decision psychiatry doesn't like, they're immediately labeled unable to make decisions for themselves. This has no rational basis and no other field operates like...

I don't know. With anorexia, there's this extreme push to make people eat. With ME, there's the assumption that you either don't want to eat or mistakenly think you can't. But perhaps the causes are the same if you look at the big picture: Both are the result of people not treating patients with...

I strongly support giving people with anorexia the option of palliative care. People with anorexia are absolutely competent to make their own medical decisions. If you don't feel comfortable eating, you don't feel comfortable eating, and you have the right not to, whether it's due to a mental or...

On Sunday I visited the ER for a vision issue. I saw many providers, none of whom asked me about my code status. I wanted them to put a DNR/DNI in, to ensure resuscitation would never be attempted at any facility in this healthcare system. When I was about to be discharged, I told the nurse...

This is pretty good news. Unfortunately no details like staffing or funding that would allow us to estimate how much research they'll be undertaking. Regardless, it's part of a trend of increasing awareness of ME/CFS, long Covid, and similar.