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As of January, over 17,000 people had completed their questionnaire and over 9,000 were asked to give a sample. That's the most recent update I know of. For context, they want the DNA of 25,000 total pwME. Not everyone is asked to give DNA, perhaps due to comorbid conditions etc., but the...

PaxMedica, Inc. Provides Business Update and Reports Fourth Quarter 2022 Financial Results https://www.marketwatch.com/press-release/paxmedica-inc-provides-business-update-and-reports-fourth-quarter-2022-financial-results-2023-03-29 Takeaways: They want to get suramin approved in the US for...

AIM ImmunoTech Announces Central IRB Approval of Phase 2 Study Protocol Evaluating Ampligen® for the Treatment of Post-COVID Conditions https://www.tmcnet.com/usubmit/2023/04/04/9788662.htm They've gotten approval from the group that reviews studies' ethics. The estimated start date on...

I'm not sure if you could get me to drink celery juice, even if it was the cure to ME lol.

This is horrible. It recommended CBT/GET for someone totally bedridden due to severe ME:

I'm now playing with it extensively. It think CBT/GET is the answer to everything apparently. I tested its response to being tole CBT/GET made someone worse: How would it view my case, considering my mental health history, the presentation of my illness upon its onset, and my inability to...

Glass AI--AI that generates differential diagnosis and clinical plans Recently I learned about this AI tool, which is currently available for anyone to use without cost or registration. Edit: Darn I forgot the link: https://glass.health/ai I'm playing around with it to see how well it...

Pretty bad phrasing. Severe LC is every bit as bad as cancer or a stroke. Getting a debilitating case of LC at a young age will cut more good years off your life than cancer when older.

Rebuking someone's immoral behavior isn't abusive.

I knew you'd have a thorough criticism of this. Any research based on health records will be biased through the lens of doctors, which means some symptoms will be missed or recorded as something else.

There's many ways to assess the current situation and I've reached the opposite conclusion. Long Covid hasn't heightened interest BPS. In reaction to long Covid, people have brought BPS ideology into the light of day and mocked it. Just this February, David Putrino was on national TV here...

This sounds like a real mess. This reform would only give you UC without requiring you to work if you get PIP, right? But PIP is supposed to be for people who have trouble taking care of themselves, which is a more stringent standard than being unable to work full-time. If you're ill enough that...

I can really empathize with that. While having children was never in my life plan, ME stopped me from getting a partner.

Was I wrong to assume? It sounds like they know how to take care of PwME. But maybe their role is smaller than I thought? I'm sorry for getting it wrong.

I'm very, very proud for the people of the Island of Man working together for so long to open this service. I'm proud that they created a clinic that has biomedical doctors improving care by listening to patient experience, and that recognizes the heavy overlap between ME and LC by merging them...

Video transcript: Announcer: ME Support (IOM) was established in 1988 by Barbara and Robin Proctor, parents of Ean Proctor, after their horrific experience on the Isle of Man. [Video from Frontline, Channel 4] Interviewer: At 12, Ean got ME and became paralyzed and mute. But because no...

Gosh, you gave me a brilliant idea! We just need to apply this to everything. You ever notice how sick people are always going to the doctor? All we need to do is get rid of doctors, then they'll stop being sick. We'd save a ton of money too.

My observations suggest that my grass is wetter when it's raining, where's my Nobel prize?

They're getting tired of ableism and moving onto racism.

This is a joke. Only two mentions of PEM, no mention of pacing. Claims fatigue is the hallmark symptoms. Make it sound like lifestyle modifications will do something.