The ME Patient Foundation

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Registered Charity 1181205

I came across this charity that doesn't seem to have had a lot of activity for a while.
advisors Dr Amy Proal @Amy Proal
and Caroline Struthers @Caroline Struthers

trustees: Emma Joy, Dr Claudia Gilberg, Geoff Jones, Adam Joy
https://themepatientfoundation.org/trustees/


https://themepatientfoundation.org/about-us/

eta: FB
https://www.facebook.com/TMEPFUK/?r...S-Zk0f-G2mgx5Bd17I74VzWxEVOFgm-j6ZPbNm15jbWR0

anyone have any more information?

eta:
They are on the NICE guidelines stakeholder list (June 13 2019)
https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list-2
 
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How odd I've never heard of them. They are a UK based registered charity.
I can't see any dates on the website. Perhaps they are new.

The foundation was set up by Emma Joy:
https://themepatientfoundation.org/trustees/
Emma runs an online support group for patients in Surrey and is an ‘Experienced Patient’ mentoring others on Natural Health Worldwide, a portal connecting patients to practitioners. Emma set up the Foundation after seeing a need for a charity that includes ethics at the heart of its work and valuing the large contribution patients have made addressing the injustices they face.
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It all looks good from their site, but I do see that they link to Dr Myhill’s MAIMES campaign calling for a public enquiry into abuse of people with ME. While in an ideal world that would be great I am not sure that she is as science-based as they would want, since they are criticising the BPS research as not science-based.

She is definitely *more* scientific and I would see her above most other doctors but I still have issues with some sweeping statements she makes as if she knows what ME and CFS are and how to treat them. She may have success for some but I don’t think her ways are THE way and have caused harm for people i know.

One of the trustees works on Dr Myhills Natural Health Worldwide site so there is obviously some connection there.

There is a good thread on MAIMES here, and it’s likelihood of success- I will post the link.

https://www.s4me.info/threads/maimes-what-do-people-think.9509/
 
I don't really know what to think about this. I guess time will tell. Their objectives seem reasonable, though RE advocating for ICC I personally am not a big fan of the US ME4ICC brigade and how they approach the issue and go after other charities. Having said that, I do think some of the UK charities need to step up their game.

I find the links with Dr Myhill a bit ironic given the charities stated objective of advocating for ICC.

Still not happy about Dr Myhill leading the campaign for a public inquiry - which we so desperarely need.
 
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InitialConditions said:
Their objectives seem reasonable, though RE advocating for ICC I personally am not a big fan of the US ME4ICC brigade and how they approach the issue and go after other charities. Having said that, I do think some of the UK charities need to step up their game.
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I agree. They are almost always right but I have been put off by some behaviour.
 
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