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Really impressed by this piece. Given it’s published in a Viennese journal, I’m suspicious WE&ME have something to do with it. Hope this will lead to some change :)

Some translated quotes: In the distinction from other diseases, the leading symptom of ME/CFS, post-exertional malaise (PEM), is of decisive importance. It is absolutely necessary for the diagnosis [6] … Secondary - mainly due to the lack and/or incorrect medical care, stigmatization, social...

Glad to hear it is going so well!

Axios Article: https://archive.ph/2024.05.14-183609/https://www.axios.com/pro/health-care-policy/2024/05/14/senators-push-long-covid-research-boost A group of Democratic senators backed by patient advocacy groups is pushing for over $1 billion in new spending for long COVID research in the next...

Couldn’t find any on s4me although it does seem like a very basic question so you are probably right. I thought it would be interesting to see with a sample that has ME (as opposed to Fukuda CFS).

Post-covid, I think the general estimate if you very roughly put together a lot of studies and surveys is around 1 in 100 people. I think pre covid it was more like 1 in 200. Those are very rough estimates and more like an order of magnitude estimate than anything precise. That gives you about...

I’m curious.

I would guess that biomarker is something unique to the disease that consistently differentiates between that disease and healthy people/people with other diseases. A biological abnormality might be more of an “abnormality” found on “average” in patients, ie. the average patient has a larger...

I don’t personally understand this well myself, but I think it’s important to distinguish between a biomarker and biological abnormalities. Because as far as I know we have consistent findings of a couple of biological abnormalities, such as in T-cells.

More research funding will surely get us more data that we crucially need. And the rise of statistical analysis using more sophisticated regression or other machine learning techniques will help find these kinds of abnormalities. However, as this thread discusses, I would be concerned such...

Out of curiosity, how close can you come to proving a physical symptom has a psychological cause. Is there ever a case you can be 100% certain about this?

I think the problem is also that very wealthy people who get ME are likely to be diagnosed and told to rest very early on. Since they have the money to get very good medical care. This increases a lot the chances they will recover within the first few years or follow a very mild illness...

Totally agree! It might just be hard to find the sweetspot between of someone bedbound but that can also tolerate a nurse present for blood draws and filling questionnaires. As a bedbound person, the idea of someone new in my room who might make noise is terrifying (all noise makes me crash —...

Thanks Hutan! I must confess I never actually watched unrest myself, because i was already to severe to watch stuff when I learnt about it. I just used it because it seemed to be the default everyone used…

please do I am curious. and tell me if there is an alternative you would recommend :)

i definetly understand. I think that’s why the MS comparison is often good too. I wonder if elderly people who are “unhealthy” (and deconditioned) because of age but not disease would be a possible help.

Obviously type of long covid is not the full picture but it helps to mention something people understand and tweet length limits make it hard to add any nuance

Do clinical trials usually have Healthy controls? I am not well versed in medicine at all but I was under the impression it was usually a Placebo group and a Drug group for drugs.

Obviously not expecting this to be seen, but without hope we have nothing.

Man can someone pitch her ME and LC? With the whole neglected illness that primarily affects women angle. Someone put Unrest on her watch list..