American ME and CFS Society - new national ME/CFS organisation, now live

[Sasha]

I've always found it a bit odd that the US had no national ME/CFS society (although Solve has become the de facto organisation, lately).

Erica Verillo, whose name I recognise from ProHealth, is the contact. She's also the author of 'Chronic Fatigue Syndrome: A Treatment Guide' from a while back.

The site is here: http://ammes.org/

There's an #MEAction article about them here: https://www.meaction.net/2017/11/10/a-new-non-profit-for-me-cfs-comes-online/

 

[dannybex]

There used to be one, now archived, but made up mostly of dated theories and hypotheses (IMO):

http://me-pedia.org/wiki/The_ME_Society_of_America

 

[Trish]

It looks like this is the brainchild of Erica Verillo. The website is very impressive, with all the sort of sections you would expect on the website of an active organisation and a very extensive library.

It seems the website has been in development for 4 years, and has just been launched, but there is no indication that they have members yet. The only people mentioned are Erica and a Board Chair. They are looking for other board members.

I note that their supporters are listed as Solve, OMF and Health Rising, with Cort Johnson (described as founder of PR and HR and writer of blogs) and David Tuller named. It implies support of HR as the provider of active patient forums.

 

[Scarecrow]

The only people mentioned are Erica and a Board Chair. They are looking for other board members.

The board chair is Marcie Zinn

http://me-pedia.org/wiki/Marcie_Zinn

 

[Trish]

I know nothing about the politics of ME in the USA. Does anyone have any opinion or knowledge of how this organisation is likely to fare, especially given that they seem to promote HR as the active ME patient forum.

 

[Scarecrow]

I know nothing about the politics of ME in the USA. Does anyone have any opinion or knowledge of how this organisation is likely to fare, especially given that they seem to promote HR as the active ME patient forum.

I know very little too. They've listed Cort as a supporter on the 'about us' page, mentioning his blogs and HR and PR. I don't think is a surprise, since Cort seems to be adept at cultivating links.

In the support section they promote the following forums:
Phoenix Rising
Health Rising
ProHealth
ME-CFSCommunity
ME/CFS Forums

Weird to have given a link to ME/CFS Forums because the link is defunct and AFAIK that forum packed in a while ago.

 

[Little Bluestem]

Given that the website has been in development for 4 years, I am not surprised that they have a defunct link or list connections with people whose behavior has since become questionable. Perhaps that relationship is defunct as well.

I know nothing about the organization, so can offer no opinion. I'm just saying don't be too quick to judge.

 

[Sasha]

Given that the website has been in development for 4 years, I am not surprised that they have a defunct link or list connections with people whose behavior has since become questionable. Perhaps that relationship is defunct as well.

I know nothing about the organization, so can offer no opinion. I'm just saying don't be too quick to judge.

Apparently the website has been live since September and the only sign of it that I'm aware of has been that article on #MEA. It gives the impression of being short of people and energy at this stage, which is understandable for PWME.