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Wildaisy

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The CFIDS Association of America, Inc.
August 9, 2014

This organizations says it represents the interests of people with "CFIDS." Maybe it does. CFIDS is a wastebasket diagnosis that includes people who are simply tired or depressed. However, the disease from which I suffer is Myalgic Encephalomyelitis (M.E.) which is a much more complex illness, with both physical and cognitive symptoms. The symptom of overwhelming fatigue is only one symptom in many. M.E. is defined by the International Consensus Criteria. (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract ).

Most recently, on August 8, 2014, the day set aside by M.E. patients to recognize the existe.ce and needs of patients with Severe ME--Severe ME Awareness Day--this SMCI chose to publicize an article about vacationing while ill. This is a ridiculous slap in the face of every real ME patient. I would like to have made my comment directly to the CAA/SMCI, but they have blocked me from posting there.

If CAA/SMCI actually represented real patients in the past, it does not do so now. Now it is only interested in maintaining the extraordinarily high salaries and benefits of some of its employees and perpetuating the existence of the organization.

These people should be ashamed to be pretending to represent this neglected patient group. They could at least be honest and rename their organization to something which reflects the fact that they really represent tired and depressed people, not people who actually suffer from the all-too-real illness of Myalgic Encephalomyelitis.

Ways to make it better...

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

Dissolve it and replace it with an organization which acts for the benefits of real patients rather than selling out their interests for the organization's benefit. You ask below how much impact I think this organization has. I think it has far too much impact--negative impact. It would be best if they dissolved or at least stopped telling government agencies, media and medical professionals that they speak on behalf of M.E. patients. They do not. They speak only on their own behalf.

More feedback

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2014

MY ROLE:
General Member of the Public

Review from Guidestar
PHOENIX RISING AN NEID CORPORATION
December 14, 2012

This is actually a blog with an internet forum attached which belongs to one individual. I would like to see the financial reports. If Phoenix Rising actually does any charity work, I have never seen it.

More feedback

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

When was your last experience with this nonprofit?

2010

MY ROLE:
Client Served

The CFIDS Association of America, Inc.
December 14, 2012

I have been suffering from Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome) for 30 years. For the last ten years, the CFIDS Assn. of America has served its own interests (large executive salaries and special benefits) rather than the needs of people who suffer from M.E. They continue to misrepresent the serious and life-destroying nature of the illness as merely annoying. They spend the available research money on psychological research rather than researching the physical cause of this very real illness. They are now advocating Cognitive Behavior Therapy and Graded Exercise Therapy for the physical illness which has disabled me and now keeps me bedbound. Further, they refuse to answer questions from M.E. patients about where they get their funding and how they spend it. They are much worse than unhelpful to M.E. patients; they are actively harming us.

More feedback

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

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served

Whittemore Peterson Institute
April 21, 2012

I wrote a glowing review of WPI several months ago, but that was before they fired the only real scientist at their Institute. When they did this, they demolished all hope of any real research coming out of this little Institute. Now it appears their main interest is in making money for the Founder, whose husband is now under investigation by the FBI and who is being sued by his former partners for embezzling millions of dollars. These people havedestroyed any semblance of respectability for themselves or their institute. I certainly want nothing to do with these people ever again, and I will tell everyone I know to stay away from them.

More feedback

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

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served

Whittemore Peterson Institute
October 31, 2011

The situation at the Whittemore Peterson Institute has changed. They have unfairly fired the researcher who was making huge strides toward development of effective treatment for M.E. and it appears they have lost their way entirely. Now they are indicating that they will try to keep the NIH research grants which had been awarded to them because of this star researcher, Dr. Judy Mikovits, and they have no one qualified to continue the research. If they keep the grants, they will effectively end this promising research.

It certainly appears that WPI is now more interested in setting up their clinic and their commercial lab to make money than they are in continuing the research which had the promise of effective treatment for people such as me.

This is a huge disappointment. I no longer feel that WPI is worthy of support.

The Great!

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

I have been tremendously disappointed by their actions indicating greed rather than caring for patients.

Ways to make it better...

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

give the NIH grants and all the research records and materials to Dr Judy Mikovits.

MY ROLE:
Client Served & I have been ill with Myalgic Encephalomyelitis (M.E.), a major neuroimmune disease. WPI says it serves those of us who suffer with M.E., but now it appears to have become an obstacle to getting us help.