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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..

Good on them then! My bad to judge before digging deep.

I think they skipped the first semester bachelor presentation of the difference between causation or correlation.

I mean the point is to get generally deconditioned people right? Do we need such high precision. If we can find one questionnaire that accurately predicts sedenterism and make that the standard (ie. each study doesn’t make up a new questionnaire) it might be a little less precise than counting...

Nominate the ME Association to get funding https://meassociation.org.uk/2024/05/time-is-running-out-could-you-spare-us-a-minute/

After some criticism on twitter BBC changed the headline of their recent article from Chronic Fatigue Syndrome: Protestors Call for specialist ME services to: ME: Protestors Call for Better Support Good news :) https://www.bbc.com/news/uk-northern-ireland-69000501

I’m sure there must already exist some activity scoring questionnaire and people could be asked to fill it out and selected if they fit into the “sedentary” category.

Statistic from new report, only 3.6% of those applying for disability benefits in Switzerland with long covid were accepted. According to the CH Media Group, more than 5,000 people have applied for support due to the consequences of Covid since 2021. To date, 3.6% of the people concerned have...

Millions missing protests infront of parliament in Bern Switzerland yesterday, featuring some wonderful people (and my shoes) I chatgpt translated the french article on it: Around 400 people protested on Saturday at Federal Square in Bern for better care for patients suffering from myalgic...

The Sick times is hiring two part time writers, and accepting pitches for Commentary/analysis pieces on Long Covid. 400-1200$ is paid per piece. I personally don’t have enough energy to contribute, but for some people here (a lot of you are really smart and have some interesting ideas to...

This is going to sound horrible, but people in rich families getting ME/CFS can really change a lot for the average patient. As WE&ME shows, money, connections, and hard work can do wonders. I’m so grateful for their advocacy.

Hi @EmmaS302, thank you for sharing this. Unless I missed it, I think something useful to say would be to give members here an estimate of how much time it would take to complete the questionnaire.