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Encouraging people to accept their illness is hollow unless society has already done everything possible to prevent, treat, or cure it. It may be reasonable to accept that nothing can be done if you have a disease on which billions has been spent. But that's not true of many disorders, ME and FM...

Good point. Letting peME suffer costs nothing, but adequately supporting them is expensive. In America, the average person with multiple sclerosis incurs far more costs than the average person with ME, because there are drugs for MS, but they're very expensive.

Yes, the effectiveness of the current vaccines is disappointing. The CDC says the bivalent booster is around 40% effective for those age 18-49. (To find, Search 'Table 2'.) But that's a naturalistic study where I believe many of the unvaxxed had some immunity from previous infections. And...

Despite being steeped in confusing language, there's definitely a kernel of truth here. Many people with complex illnesses are disbelieved because it isn't visible, and this struggle to express their sympoms and feelings in a way others understand.

I knew of one person who experienced that. An ME/CFS specialist told her, "Don't join any support groups or you'll get worse." It's absurd. Joining support groups and reading ME-Pedia has helped me receive better medical care. Because of advocacy, I'm able to describe my illness in ways people...

The source appears to be this:

Agreed. Using modern definitions of ME should be a requirement for research. Nobody should fund anything that uses Fukuda, etc.

Scientific papers on LTSE are lacking. It's a hard subject to research because it can be hard to tell if overdoing it was the cause, or someone just got unlucky.

That's...depressing. They haven't funded anything biomedical except DecodeME?

My mom said she's particularly angry about this sentence, because how can you actually predict that? I like that the article said that, because it's one of the few concrete claims she makes, and could well be disproved in the future. And if it is, the entire article's logic collapses like a...

A hash is when you take a bunch of data (could be text, numbers, a large computer file) and you run it through an algorithm that "scrambles" it to create a random number. The number you get will totally change if the data changes even slightly. Which means you can't tell what the input to the...

*Chucks the paper into the wastebasket*

Sounds like they're hashing your personal info

I've heard nothing good about how Australia manages ME or LC. I hope their plan involves doing something, and that it's not just talk.

I haven't pushed for a GWAS because DecodeME exists. Hope I can trust the British scientists this time ;). But seriously, we need a GWAS for long Covid. Design would have to be careful because LC isn't one disease or even one syndrome--there are multiple clusters of symptoms.

I can't believe they still use terms like this. Not understanding what's wrong is equated with nothing being wrong.

Wow, I've never seen Ron Davis speak about CBT/GET before. He doesn't talk about advocacy much, as if the idea the ME is mental illness is too absurd for him to even engage with.

6 million for a single project would allow for a large and rigorous study to reproduce previous findings.

The biggest flaw is that they're not similar at all. Subtle changes in the brain? Sure. But it just doesn't jive with things like POTS/OI, SFN, or abnormal CPET results in pwME.

I'm gonna be sad if there's a vaccine for HIV, but I'm too sick to need it because there isn't a treatment for ME. I think that's likely.