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https://meassociation.org.uk/2023/11/the-me-association-writes-to-the-president-of-the-royal-college-of-psychiatrists-regarding-their-website-information-on-me-cfs/ The ME Association writes to the president of the Royal College of Psychiatrists regarding their website information on ME/CFS

Or even making the service community based and see people at home

Steungroep ME en Arbeidsongeschiktheid (Netherlands) have also signed. Thanks again for your help @Solstice

Many thanks to Steungroep ME en Arbeidsongeschiktheid (Netherlands) who have signed the letter and are supporting the petition

Presumably meaning what is proffered is in lieu of effective treatment therefore can at best be described second rate

Wow I’m gobsmacked by the spread

Yes it will be. https://meassociation.org.uk/wp-content/uploads/2020Health-Counting-the-Cost-Sept-2017.pdf The IoM report claimed 17-24 billion dollars in USA https://www.cdc.gov/me-cfs/about/index.html#:~:text=An estimated 836,000 to 2.5,medical bills and lost incomes.

:thumbup: 10k is definitely achievable. Great help if members who have social media presence, especially folks with blogs and some followers, can share the link regularly every couple of weeks or so

https://studyfinds.org/authors/

Thanks @EndME i will add them to our list

:hug:

We’ve heard back from Lost Voices Stiftung who have joined the letter signatories :)

Many thanks to Lost Voices Stiftung for signing the letter and supporting the petition

I’m sorry your daughter was made worse by it

If they do a study properly it will show either way whether the drugs help. If not then people can stop experimenting unnecessarily.

@Perrier I think most patients have tried LDN is overstating things significantly. I only know of one person. I haven’t tried it and I suspect a fair number here haven’t either.

Yes and this to me is why part of GPs actually treating (in the broadest sense) PWME should involve annual or biennial reviews.

Where is that quote from @Mij

That was successful thanks

Many thanks to Millions Missing Holland who have signed the letter and support the petition.