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Are efforts being made to enrol people who don’t live on the internet? Were any people with a background in epidemiology or statistics involved in designing this project?

That's a lot of steps, especially for severe patients. When I was severe I was doing less than 500 steps per day. Not surprised to see this. I've long suspected that Fitbit is inaccurate and tracks arm movements. Good study, useful results.

I keep thinking I must be misinterpreting it because there's no way in hell something so absurd would pass peer review. But then again, as we've seen before, anything goes when it comes to publishing research that makes ME/CFS patients look stupid or insane.

GTFOOH. This study is utter nonsense.

I had an almost identical experience, and it was the most demoralising year of my life.

Executive dysfunction is also one of my most worrisome symptoms. It makes it very difficult to get a job, even one that permits working from home. Struggling to maintain a 4-digit code in your working memory, or a phone number you just looked up, these sorts of things are really troubling.

Have you had a chance to check out Fig 3? The patient with elevated anti-Ro antibody, it barely declined with treatment, and they still had quite elevated levels of fatigue after 3 months. Bad news for Sjogren’s?

Having waded through the whole paper now, I don’t see any wrong ideas in it such as T cell driven autoimmunity. Regarding citations or lack thereof, that’s always driven by politics.

Elsewhere they talk about how the patients also lost other autoantibodies. I think that’s what they’re referring to, not T cells.

The paper offers an explanation for why rituximab doesn’t work for SLE

Huge if true.

Congratulations to the team on this huge milestone.

Yes. It’s important to remember this is largely a pop psychology / marketing term. It’s not taught in clinical psychology.

Trudie needs to explain why conditioned fear of exercise / standing developed now but not after previous dozens of colds/flus/stressors/whatever the person experienced in their life up to that point. I’ve never met anyone who decided to just take to bed and never get up again after an infection...

She’s lucky. The last thing you’d want as a severe ME/CFS patient is to appear on the radar of UK “services”.

Can confirm. I saw one of those UCL neurologists for POTS and the prescribed treatment was go to the gym. I was almost 100% bed bound at the time.