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This is good. They seem to have improved the clarity of their writing, and the ideas are spot-on. People with ME demand to be treated according to the standard of care, just like everyone else. And doctor can face legal action if they don't bother to provide that.

I always heard Ampligen had a pretty benign safety profile. I think this is a positive development. If it gets approved for LC it will see immediate, widespread off-label use in ME, but that doesn't mean it will work.

Thought this was gonna be an interesting paper, but we've been let down. They make no connection between LC and ME. They neglect the importance of PEM. And why don't they look at unrefreshing sleep? It's a main symptom of ME, and I bet many pwLC have it too.

Solve ME has also covered this: Breaking News: FDA clears Ampligen to start a clinical trial in Long Covid

Merged thread AIM ImmunoTech Announces FDA Clearance of IND Application to Evaluate Ampligen in Phase 2 Clinical Study for the Treatment of Post-COVID Conditions AIM Immunotech will be doing a Phase 2 trial of Ampligen for long Covid fatigue. Here is a press release from the company: AIM...

It will. It definitely will. Just providing every pwME with sympathetic doctors and the supports they need to survive would drastically reduce suicides. Disease-modifying therapies will reduce that even more.

You don't need a doctor's permission to apply for SSDI. A doctor who provides detailed info about your functioning will help you get approved, but this stat tracks applications. However, you may be right that people aren't applying because their doctors don't support them, hence, they don't...

That's very strange, given the wave of LC. Maybe many pwLC aren't even bothering? Also, SSDI applications seem to be correlated with the economy. They drop as unemployment drops--presumably people in marginal health are shifting towards work. Maybe an increase in long haulers is being offset by...

You're hitting the nail on the head. Science is prioritizing quantity over quality. To answer scientific questions, you need the opposite. One large, rigorous, definitive study has more value than 100 small poorly-controlled ones, in the same way one sharp photo is worth more than 100 blurry...

I read the chapters on sleep. I can't comment much on it because I don't even understand it! It's incomprehensible.

Agreed. Skimmed a few pages before I reached the limit of how much I could roll my eyes :). This paper is such garbage it should be retracted. I should dig into the sleep section to see how laughable it is. We all know it's not wanting to sleep. It's sleeping 10 hours and feeling like you slept...

My favorite quote from the video: He understands that people were willing to suffer for the important research he's doing. His empathy actually brought a tear to me eye. I watch these videos to learn, but also to feel safe. Hearing biomedical doctors talk about ME makes me feel validated, that...

Thank you so much for advocating for us @Tom Kindlon . The article turned out to be solid.

There are very strong correlations between childhood trauma and serious illnesses. For example, the ACE study. The current hypothesis is that ACEs adversely impact brain development, which leads to mental impairments, making it harder for people to take care of their health, increasing the risk...

This paper is almost word salad. I bet an AI could write a better paper about ME. Actually, I attempted this is GPT-J 6B. In fact, it did. The prompt was "myalgic encephalomyelitis" and the computer wrote the rest. I bolded some phrases where the rhetoric is quote biomedical. Edit: This was...

Good because it rebuts the notion that people in developing countries don't have complex chronic diseases. BPS say things like, "If these people were in Africa they'd have to work and get over it" or "If they just took a nice vacation they'd forget about being sick." (Never mind that those seem...

13,500 done with the questionnaire. That's really good. I hope you hit your goals quickly. PwME around the world are watching this study, and hoping it provides answers, or at least lets us ask questions intelligently.

I watched this whole presentation. Nothing in it was totally new, but I liked it. It was a solid overview of PEM and useful for educating doctors and PTs. Dr. Davenport is insightful and empathetic. Repeatedly, he emphasized that PEM and deconditioning have both entirely different causes and...

That's horrible. The "focusing too much on symptoms" bit needs to be fought against hard. I've done so many fun things that made me completely forget about my illness, only to get the exact same PEM afterwards. Heck, I didn't even know I was ill for 3 years, I thought I was just having...

This is concerning, to say the least.