The ME Patient Foundation

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

 

Claudia and Geoff:

https://uttingwolffspouts.com/who-we-are-2/

 

Charity Commission:

http://apps.charitycommission.gov.u...teredCharityNumber=1181205&SubsidiaryNumber=0

Governing document
CIO - FOUNDATION REGISTERED 17 DEC 2018

 

Claudia and Geoff are on Twitter, as well as the https://uttingwolffspouts.com/ blog.

They are good people.

 

Claudia has authored papers for the Centre for Welfare Reform

https://www.centreforwelfarereform.org/about-us/centre-fellows/dr-claudia-gillberg.html

 

In addition to the website and Facebook page there is also an associated, but not yet active Twitter account:

https://twitter.com/mepfuk

That's an easy Twitter handle to remember - mepfuk

 

Charity Objectives:

https://themepatientfoundation.org/charity-objectives/

Ethics:

https://themepatientfoundation.org/values/

 

I had a word with Claudia, yesterday. This nascent organization is preparing to officially launch very shortly.

There is a list of Objectives: https://themepatientfoundation.org/charity-objectives/

 

I am on the Surrey ME FB group that Emma runs. Always seems to have good info/responses.
Emma did the excellent tweets from IiME conference in 2018.

It will be v interesting to see what they are planning, sounds very much in line with "our" approach.

 

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.

 

I agree. They are almost always right but I have been put off by some behaviour.

 

I’ve just been reading about them and am pleased, they’ll be able to contribute a great deal and move forward on issues so I’ll be keeping a close eye.

Australia often follows UK policy so what happens there matters here.

 

They have launched
https://themepatientfoundation.org/...27fBm7xF2BnUxtAh3OJKBcehR9IvucE9-uGOVqFTgXIt0

 

They've just launched but were stakeholders in the ME Guideline review process - how does that work?

 

This surprised me. Is it true? Biomarkers or diagnostic biomarkers?