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50% of ME/CFS patients don't have MS. If they did, half of us would ultimately be dying of untreated MS.

The claim that up to half of ME/CFS patients may also have MS. Is this not an irresponsible claim?

I think the way this is phrased (already discussed in a previous thread when a draft version was first posted) is counterproductive and may damage us further. Elsevier is not going to take these weak arguments seriously. Patient advocacy groups have been making the same arguments for 40+ years...

Nothing new here.

The NIH should not be platforming this stuff.

I’m laughing at the thought of us building nests.

1980s called and asked for their idea back.

“the bastards don’t want to get better”

Yes, even now that the reality of postviral syndromes can no longer be denied, with millions of previously normally functioning individuals succumbing to disability en masse, he finds a way to exclude us.

Fauci isn't some random member of the public. He was the director of NIAID from 1984 until like two minutes ago. It's ok to change your mind and evolve your positions over time. We all do. It's not ok to pretend like you didn't just spend 40 years engaging in minimisation, denial and ridicule of us.

Fauci was singing a very different tune during the Incline Village era of ME/CFS.

Funding is one factor. Another issue is staff moving on. A lot of small/exploratory studies in medicine aren't carried out by professional scientists but rather registrars (residents) who move from one post to the next every 6-12 months. There may be no one left with interest in the same topic...

The responses to Carson's uninformed tweet are just great. He's really getting roasted. It's clear he didn't look at the study and tweeted that to try and dismiss it out of hand. These patients were not on bedrest. I'm sitting here with a similar step count as the people in this study and I'm...

What nonsense. He's going to continue telling his patients their PEM is actually DOMS and they should just push through with "rehabilitation".

Having ME/CFS in a low-income country is extra hell because you can't fall back on govt assistance and you're at the mercy of your relatives who may be abusive or disbelieving.

Sickening.

Most grant reviewers and all major medical school textbooks regard this illness as psychosomatic.

I can't drink a drop of alcohol. Instant nausea, vertigo, general malaise/weakness. I also can't drink coffee. Instant tachycardia.

Also, hypersensitivity to meds, vitamins, lights, noise etc.