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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.

I’ve shared this before but I think it is relevant in this thread https://www.politico.com/newsletters/politico-pulse/2024/04/29/shooting-for-the-moon-is-getting-harder-00154868 “Shooting for the moon is getting harder - Politico US” 29 April 2024 CONGRESS PULLS BACK $$ — President Joe Biden’s...

Thanks for the really interesting and well-thought reponses Kitty and Jonathan. As for that quote you literally made me laugh out loud even though I’ve been non-verbal for months. Thanks for that I needed it :)

I often hear the claim that the reason ME/CFS is neglected psychologised etc. is that we don’t have a biomarker for the disease. In my opinion, it is a possibility that we have a biomarker within the next decade, even though it might only be usable in specialist laboratories. How do you think...

Republicans blocking major sources of funding to “Cancer Moonshot” https://www.politico.com/news/2024/04/29/congress-is-killing-bidens-cancer-moonshot-00154718

Atleast in my personal illness experience, when completely bedridden, no sound or light input, only liquid food etc. No confounding factors. Sometimes simply thinking about a stressful thought, or thinking about something that takes a lotta energy (like solving a math problem in my head) could...

I think any model that explains cognitive PEM could explain sensory hypersensitivity through that same framework.

Yes, criteria for a plausible model becomes a whole lot more difficult if you consider the fact ME/CFS could be a collection of similar or related diseases, with differing or semi-related mechanisms. It seems that current evidence suggests that the immune abnormalities present differently in...

Another thing is the model needs to be able to explain how some people within the same disease category, can live a near normal life, while others are bedridden, unable to speak, unable to move etc.

I love the idea. Just as a thought, would a theory be false if it assumed we needed a trigger that encompasses immune activation from viral/bacterial/fungal trigger? A portion of ME/CFS patients report to get the illness from psychological or physical stress. However, could we hypothesise that...

I wonder if trying to get Nath and Walitt to attend these kind of things would help them “get it” or if it is already a “lost cause”.

Is it a reply to criticisms they have faced which they judge as “unfair”, or are they brainwashed by the narrative that ME organisations are militant and trying to “pacify” them?

have they ever seen/read about someone with very severe ME. This just makes me sad :(

Hi, I couldn’t find a general thread to post this so I’m making a new thread. A small but in my opinion cool way to increase advoacy, an initiative from my girlfriend: My girlfriend is the best. Organising a screening of Unrest at the university I had to drop out of due to severe ME.