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John B.

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The CFIDS Association of America, Inc.
June 6, 2011

I am a person who's been suffering with the disease originally known as Myalgic Encephalomyelitis then Chronic Fatigue and Immune Dysfunction Syndrome and now ME/CFS for 26 year. I am embarrassed to say that I have been donating to this association for years through payroll deduction at work.

CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome. It is a complex nuero-immune disease that is poorly understood and trivialized by the CDC by their horrible name: Chronic Fatigue Syndrome . This name has condemned the 1 to 4 million Americans suffering with it to a life of mistreatment and disrespect by friends, family, employers, co-workers AND the medical community.

Among all the dis-services done by the CAA, this organization was responsible for this name to remain as when it was to be changed by a Congressional Order back to Myalgic Encephalomyelitis, they stated that changing the name would make it more difficult for sufferers.

The CFIDS Association, Inc, also known as the CFIDS Association of America (CAA) is the puppet of the CDC and DOES NOT represent the needs of people suffering from Myalgic Encephalomyelitis. They exist to support the high salaries of their officers.

The Great!

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

not being able to receive proper medical treatment.

Ways to make it better...

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

Dis-ban them completely.

More feedback

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

How did you find this group?

Web search.

What, if any, change in your life has this group encouraged?

They have ruined my life by perpetuating the disease Myalgic Encephalomyelitis. Because of their actions I have not been able to receive proper medical care or treatment, I have lost jobs, my marriage dissolved and my children grew up without the benefit of a father who could be there for them when they needed (Boy Scouts, Girl Scouts, Little League, being a friend).

When was your last experience with this nonprofit?

2011

MY ROLE:
Client Served & I mistakenly put my trust and support in the CAA.