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Rod Powell

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
October 26, 2014

"Sadly, instead of showing solidarity with the experts and the patient community it is asserting to represent, PANDORA, following in the CFIDS Association of America’s (CAA) footsteps, chose not to stand with the ME experts regardless of what it is claiming. After much speculation last week by patients on the position of PANDORA on the IOM contract and silence for days, PANDORA went into full-blown damage-control mode on October 14, 2013. It finally released an official statement on the IOM contract (“position paper”). In it, PANDORA concedes that it “turn[ed] in a list of expert nominations.” Even though we pretty much knew, from the information that leaked last week, that this was going on, many patients’ hearts sank." For more info go to http://thoughtsaboutme.com/2013/10/16/opening-pandoras-box-pandora-cozies-up-to-iom/

MY ROLE:
Client Served

The CFIDS Association of America, Inc.
July 1, 2011

another client not served--the CFIDS assn of America has been doing disservice to the people it says it represents for 20 years now, since it was taken over from its founder by Kim McCleary. They say they are no longer a "patient organization," and now they are a "donor organization." They did this when the number of their members was dropping like a stone. I think they did it because they do not want to have to make public how few people with CFIDS actually support them. They have joined with the US Govt Center for Disease Control to make the plight of sufferers even worse, by publishing materials for doctors which tells doctors the disease is all in patients' heads and what they need is behavioral therapy and exercise, which have actually been proven not to help and exercise frequently causes worsening of the disease. This organization should be closed down.

The Great!

I've personally experienced the results of this organization in...

I was on the receiving end of the CFIDS Assn's quest solely for funding without helping patients

Ways to make it better...

If I had to make changes to this organization, I would...

Fire Kim McCleary and Suzanne Vernon, or close down the organization and start over again.

MY ROLE:
Client Served & I used to support the CFIDS Assn under its founder, Mark Iverson, but it has been ruined by Kim McCleary.

Review from Guidestar