Hi can any forum members based in Austria or Switzerland help with information about ME Organisations?
We have contacted WE&ME Foundation - https://www.tempi-stiftung.at/ contact@weandmecfs.org https://de.weandmecfs.org/contact Email sent 23 Sep
Österreichische Gesellschaft Für ME/CFS -...
Also should have mentioned if someone would be able to volunteer to translate a message (couple of paragraphs) into German that would be great (I don’t trust my A level German from 42 years ago)
We’ve got some German organisations on our contact list we’re working through for the Cochrane Advocacy.
German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V. have signed. Thank you.
ME/CFS Research Foundation https://mecfs-research.org/
contact@mecfs-research.org we’ve...
I’ve only skimmed, there is some interesting information, a lot could no doubt be interpreted differently by a different reviewer
responses show some services that are keen to demonstrate that what they do is compliant with the new NICE guidelines, some a flavour of we were already doing that...
That’s good news.
When we get new organisations signing and sharing the petition numbers get a boost. It’s also helpful for organisations that have already shared on social media to share again after a couple of weeks as people don’t get to see every post.
19 October 2023
ME Association announces post mortem research partnership with Manchester brain bank
https://meassociation.org.uk/2023/10/the-me-association-announces-new-post-mortem-research-partnership-with-manchester-brain-bank/
19 October
ME Association announces post mortem partnership with Manchester Brain Bank
https://meassociation.org.uk/2023/10/the-me-association-announces-new-post-mortem-research-partnership-with-manchester-brain-bank/
Funding is from government bodies in various countries so that would be a big challenge.
https://www.cochrane.org/about-us/our-funders-and-partners
https://www.cochrane.org/news/news-cochrane-uk
Side effects and timeframe of at least 6 months are very important aspects on any report of individual improvement. I’ve had prescription medication that helped quite a lot with sleep for months then i became aware of the significant side effects and then eventually the beneficial effect...
Don’t know but definitely a positive step, maybe ask for advice about any steps that could be taken within parliament eg the APPG approaching relevant Select Committees to highlight concerns.
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