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I personally would not donate blood/organs for several reasons: Donating blood could harm my health. PwME may have low blood volume for example. There could be something in my blood that makes someone sick. I tend to think more chemicals than pathogens, but maybe we have high levels of common...

POTS being more common in the long Covid group is pretty unexpected. I wonder what could explain this? Maybe Covid is causing POTS at a higher rate than other viruses for some reason. Anecodotally, I hear of a lot of long haulers with POTS or POTS-like symptoms.

Here's another article in the series, a comic about a woman who went from being highly athletic to being disabled by POTS. I was an athlete – now I’m 30 and in a wheelchair thanks to long Covid

I started a thread about it here: Outcomes of SARS-CoV-2 Reinfection (Preprint)

Outcomes of SARS-CoV-2 Reinfection Preprint, Open access: https://www.researchsquare.com/article/rs-1749502/v1 Discusses the risk of long Covid from reinfection. They find that a second infection carries additional risk for long Covid. Abstract: First infection with SARS-CoV-2 is associated...

That's looking really good.

No, these drugs aren't ME-related. One is for Alzheimer's and another is for ALS. Not my check personally. The fact that the gov't expected to have to give millions of people Aduhelm caused the Medicare part B premium to increase significantly for everyone this year. Awkwardly, Medicare later...

As morbid as it sounds, you're right. We need to consider survivorship bias when looking at suicidal thoughts in pwME. Otherwise, we might get some absurd results, depending on the rate of actual suicide.

Rock solid article. This is the kind of research we need to see. The paper presents ME and LC as inexorably linked and certainly biological. It gives good advice to mental health professionals for helping clients live with either condition. In short, it's the good kind of psychosocial research.

Yikes. Then I wouldn't be considered to have ME. Then what?

Stigma is a major factor, increasing risk of suicidal ideation by roughly 4 times. No surprise there. Receiving disability benefits increases the risk of suicidal ideation? That's strange. Is it because people on disability have worse functioning, maybe more social isolation? Their conclusion...

Cort Johnson covers the trial, along with a history of Ampligen and AIM ImmunoTech, in Health Rising: Longtime ME/CFS Drug Ampligen Gets Its Shot with Long COVID

The FMT study is potentially interesting but they insist on weird outcome measures. I think an FMT would be easy to blind so why not just use symptoms scores or something? The SGB is also hard to blind because it causes certain side effects. Wust's research on microclots probably won't find...

I'm lucky to have had a different experience with family. They believe me. My mom even reads about ME from biomedical sources.

I can't believe she's letting people get antibiotics over the counter. This is gonna drive resistance. I can't believe she's serious.

Postacute sequelae and adaptive immune responses in people with HIV recovering from SARS-COV-2 infection Open access: https://journals.lww.com/aidsonline/Fulltext/2022/10010/Postacute_sequelae_and_adaptive_immune_responses.1.aspx Abstract: Background: Limited data are available on the long-term...

They're so close though! Using the term ME/CFS, then referring to it as a disease. "All publicity is good publicity." We should be grateful this and advocate for better.

Unfortunately, I can only read the abstract, but if they didn't they really should have looked at whether having doctors or family who believe you're actually sick has an effect. I bet it does.

That's completely at odds with how I describe my condition to others. For example, I was once on the phone with someone at a physical therapy clinic, and I said "I have no physical limitations in the conventional sense..." then described PEM. The way I've seen it described by others is that if...

The also use the Hospital Anxiety and Depression scale to evaluate mental health, which only asks about emotions, not tiredness or autonomic symptoms.