My Nonprofit Reviews

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Jane

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3 reviews

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

Rating: 1 stars  

There is no role category for 'client not served' so the role indicated here is misleading. The CAA were originally a patient-led organisation. That all changed a decade or more ago. Now, it's more of a gravy train for the CEO and scientific advisor. They fail to publicise important developments or get behind others in the field that are doing useful work. Their sole raison d'etre appears to be to keep themselves in business, with an ever growing constituency of sick people to milk.

It appears that members of the CAA have been reviewing themselves on these pages - their underserved client base would not write reviews such as I see published here, with five star ratings. See the patient poll here: http://forums.phoenixrising.me/showthread.php?10169-Caa-poll

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

Trying to suppress the truth, and trip up people who are working to bring help to the +/- one million Americans with ME aka CFS/CFIDS.

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

Sack the lot of them

Role:  Client Served & I advocate for people with Myalgic Encephalomyelitis, which is a discrete neuro-immune disease that continues to be obfuscated by the CAA as 'CFS' and 'CFIDS'.
 

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

Rating: 1 stars  

The CAA really don't do what they were set up to do.. Many CFIDS/CFS/ME (all the same illness - silly ain't it) patients are upset and disappointed with their poor track record. One patient forum has a poll up on this here http://forums.aboutmecfs.org/showthread.php?10169-Caa-poll where you can see there is an overwhelming need for the CAA to change both leadership and direction.

For the patients, the Whittemore Peterson Institute (also part of this competition for funds) have done more in a few short years for them than the CAA has ever done.

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

Advocacy, it suck.

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

Get rid of the board, the scientific advisor and the CEO

How would you describe the help you got from this organization?

None

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?

They are the major ME/CFS group in the States.

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

none

When was your last experience with this nonprofit?

2011

Role:  Client Served & I'm ill with ME.
 

Review for Whittemore Peterson Institute, Reno, NV, USA

Rating: 5 stars  

Thanks solely to the WPI, people with Myalgic Encephalomyelitis (ME/CFS) and other poorly understood neuro-immune illnesses finally have hope of understanding the disease processes and treatment that works.

They are almost entirely privately funded, and yet they are doing work that is vital to millions around the world.

The WPI is where the money should go.

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

Changing the outlook for people like me with ME/CFS

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

Give them loads of money to continue doing their important work

Role:  Client Served & I have gained support and hope .