Search results

Yup same

Whether or not Jon Stone is an author is a usually decent proxy for how “useful” an FND study is. Checks out here.

Ah yes Myalgic Encephalomyelitis/Cerebral Spinal Fluid

Nath uses the same terminology and it really erks me.

The authors seem to be a mix of psychiatrists and neurologists. Only the last author seems to be french-speaking, all other german-speaking, so I wonder how this piece came to be…

Wow, not every day you hear about ME from the francophone side of Switzetland, we have less than 5 practicing doctors who take the illness seriously at all. Abstract seems like the paper is gonna claim lots of unproven stuff as proven though.

Disabled people like us on limited income are likely the last who will have access to those drugs unfortunately. (Given both the political system, and the ableism that permeates healthcare.)

A significant subset (NIH CPET study estimated at 25%) of people with ME experience a phenomenon colloquially described as an “adrenaline rush” during and after overexertion, but before PEM begins. This is characterised by a rush of “fake energy” giving symptoms such as tatycardia, muscle...

That’s crazy. Thats like if by 2028 the NIH allocates 80 million to ME (in terms of precentage increase over 4 years). That would be a massige deal. Obviously if it isn’t well spent it would not lead to much immediately, but thats probably a doubling or even tripling of the global yearly...

To me I get similar warning sign symptoms when overexerting in other ways, when in an upright position. And then I get delayed PEM. Because of this I’m 100% horizontal.

Thanks for the explanations. I definitely feel it has something to do with PEM in my case, but yes at the end of the day PEM is such a vague concept anyways.

Do we have enough evidence to “refute” the assertion that: “Orthostatic intolerance in ME is nothing more than PEM. The body uses more energy when upright than horizontal. In some people this will trigger PEM, including immediate warning sign symptoms.” To me that seems like a plausible...

RCT of Low Dose Apiprazole. Small cohort of severe people. Follow patient made protocol. Titrate from 0.1mg - a couple mg as tolerated. Don’t increase activity levels for first 6 months. Long trial, 1.5+ years, to measure “poop out” effect some describe. Primary outcome measure = Fitbit...

Are there any planned / ongoing LDAbilify studies that have a control group? A lot of people have reported positive effects, it seems worth investigating.

Yes I was similarly confused reading that exchange with Todd

This is extremely true. But also, this replies end up influencing public sentiment. Long term I’m planning on completely leaving twitter but I’m finding it really hard to get a similar reach on Bluesky or Mastodon.

I think Todd Davenport said they were planning on publishing them in the next year or two.

Ever since Elon Musk took over twitter, looking at the replies of any political tweet is just bullying and far-right conspiracy theories.

I see that point. But I think there’s a counterpoint in that society and medicine does not take PEM seriously at all, or even really believe it exists. And pwME are constantly forced into PEM through interacting with these two systems. If we’re gonna have people in PEM we may aswell advance the...

If this hasn’t already been done before. I want a large cohort of people who’ve been diagnosed with ME or “CFS”, them to all go through questionnaires for major diagnostic criteria: IOM, ICC, CCC, Fukuda, Oxford. And a couple questionnaires that might be good at predicting ME, such as FUNCAP...