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Flo Henson

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Whittemore Peterson Institute
April 12, 2011

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."

The Great!

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

I’ve personally experienced the hope engendered by this organization, which takes the disease seriously and is fighting to find a treatment.

Ways to make it better...

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

This is the best organization in the history of this disease--the sort of organization I dreamed about for years.

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

Review from Guidestar
The CFIDS Association of America, Inc.
April 12, 2011

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.

The Great!

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

Every time I interact with doctors, family and friends, I personally experience their disbelief. One thing that has added to this hurtful attitude over the years is the CAA's public willingness--demonstrated in their Continuing Medical Education course--to support exercise and cognitive behavioral therapy as treatments for the disease.

Ways to make it better...

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

If I had to make changes in this organization I would replace the CEO. The Board has given their CEO a hugely excessive salary, while giving a pittance to science research. I would also replace the Scientific Director, who has never apologized for her part in establishing the CDC’s adoption of the broad, sloppy, revised Fukuda definition and who publicly addresses patients in a condescending manner.

MY 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'.

Review from Guidestar