Austria: WE&ME Foundation

[Kitty]

can you name three of the most assumptions/ theories still sticking around not grounded on robust science.

This is from one of the principal UK charities, the ME Association, purporting to show where research has shown 'levels of dysfunction'.

Almost none of it has been confirmed, and the charity doesn't understand that even suggesting it's reliable science can cause harm to patients.

Here's the source, for info: https://meassociation.org.uk/information/what-is-mecfs/

 

[Chandelier]

From Twitter:

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Christoph Ströck @cstroeckw
Remarkable things are happening on Science4ME.

As part of the process developed by @weandmecfs with Science4ME, researchers who have advanced to the second round of the WE&ME Projects Call are voluntarily presenting their proposals for discussion with forum members.

They’re testing their ideas against the knowledge, experience and questions of scientifically minded patients.

If you’re scientifically minded yourself, have expertise in research, methodology or a relevant field, or bring an informed patient perspective, consider joining. Your experience and questions could help strengthen ME/CFS research.

The forum is sometimes criticised as “negative” or “pedantic”. That’s hilarious, because people who question assumptions and scrutinise details are exactly those you should want to test your ideas with if your goal is scientific progress. It’s not a panacea, but it should certainly be part of the process.
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[MSEsperanza]

From Twitter:

A huge thank you to Christoph Ströck.

To facilitate sharing, would be great to have a Bluesky and a Mastodon version of that message.