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I feel quite sad for her, seeing the awful state she was in last year (and is still in). I'm glad to see she's getting a little better. We should also be grateful of the amount of energy she's expended to remain in the public eye as an activist through all of it.

It means the loop that creates PEM could involve signals going through the brain, or that the mechanism for PEM is present in all organs. I highly doubt PEM is entirely generated from the brain, although the brain can do a lot. But there could be some sort of immune or inflammatory signal that...

This may be a little bit helpful, it's not a complete waste of time. We need to get better at psychologically supporting people with post-infectious syndromes, by affirming their illness and helping them cope (as opposed to buying into the delusion that you can think yourself better).

Thank you for explaining all this. I don't always pay close attention to ME/CFS, especially the big picture, so I appreciate your article.

This is a great idea. if I were an ME charity, I would be digging though my couch cushions to fund this, because I expect it to teach us things that are well worth 7 million quid.

Judging by the graphs, there's no real difference between groups A and B. If the drug worked, you would see group A improve, then group B, but I don't notice anything except that group B seems a little healthier.

This sounds like what investment people call "activist shareholders". When a company is doing poorly, sometimes new or existing investors will campaign for replacing the leadership and reform. And indeed, AIM Immunotech is following the typical path of biotech startups. Investing in biotech is...

I agree strongly with the main premises of the article. Medical trauma is widespread and causes severe harms, and is disproportionately likely to hurt those who are already vulnerable, such as people with developmental disabilities, with pre-existing trauma, or living in poverty. It caused me a...

Very good article that highlights the value of PLRC. I didn't know (or didn't remember) that they funded the study on PEM and muscles, which I think was a novel and important one. I'm very grateful for them because the big institutions still simply don't know how to help us.

If none of the outcome measures show a meaningful change, crumple it up and can it. It doesn't work and scientists need to spend their effort on other treatments for long Covid. That being said, I'm a bit sad seeing it fail after all the dramatic testimonials of it curing long Covid. A couple...

It's been about a year since I last posted this. Much more research has some out, but I still believe the same. They've found precious little evidence for it. It's very unlikely that ongoing infections or viral persistence drive ME or LC. The one trial of Paxlovid in LC that completed failed...

This trial was completed and found Paxlovid didn't help. Source: Paxlovid fails to improve long-COVID symptoms in small study

The decline in income prior to diagnosis is stunning and proves what we knew all along: Many pwME have a delayed diagnosis, despite being very sick. It took me about 3 years 9 months.

I hope they publish something because a negative result could rule out a mechanism. On an unrelated note, I now wonder what the people who raised money to conduct a trial of BC-007 in ME/CFS are going to do with their funds.

The authors must think ME feels like being a little tired and that people with ME are just too weak-willed to get on with life. It's extremely arrogant and ableist. It makes me sick. Many times in my life I didn't exercise or sleep enough, and it's incomparably different. When I was sleep...

This paper might be important by making the viral persistence hypothesis more difficult to support. If the authors are right, then some people have remnants of the spike protein but it has little to no influence on the disease.

We must try to get our voice heard no matter who is in office, even if they're wrong on a bunch of science issues like RFK. He's expressed a desire to take ME more seriously in some of his books, so you never know.

He's still an AIDS denier?!

I worry about this a little because people with severe ME don't tolerate travel well. If doctors are understanding, it's better to care for them in their local hospital than in a central location like London. It's probably necessary if it means better care though.

Your observations are spot-on I think.