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Flo Henson

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2 reviews

Review for Whittemore Peterson Institute, Reno, NV, USA

Rating: 5 stars  

Most research organizations exclude severely ill CFS patients from their studies, by making participation difficult for patients who are unable to leave their homes or their beds to donate specimens. The WPI includes these patients by sending phlebotomists into the homes to collect the specimens. The WPI understands that CFS is not caused by "false illness beliefs."

Role:  Volunteer & I send money, when I can. If I could, I would give them a billion dollars.

Review for The Cfids Association Of America, Inc., Charlotte, NC, USA

Rating: 1 stars  

The CFIDS Association of America (CAA) does not fight for the patients. The organization needs to make clear and consistent statements about:
(1) the harm that exercise can do to severe patients
(2) the need for an accurate case definition, such as the Canadian Consensus Criteria
(3) the harm the CAA and government policies are doing to children
(4) the quickly approaching government plan to reclassify CFS as a mental disorder
(5) the unqualified, inappropriately educated people the NIH and CDC use to award research grants, and
(6) the miniscule amount of money set aside by the government to study this sometimes life-threatening disease.

Role:  Donor & I was a donor and supporter of the CAA for many years, until it became clear that the organization’s work was harmful to CFS patients—especially to the most severe patients. It started with their public criticism of Hillary Johnson’s bombshell, Osler'.