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July 29, 2013
1 person found this review helpful

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July 29, 2013
1 person found this review helpful

In 2011 my son and I were notified that we had been awarded a full Scholarship/Sponsorship to travel to. be seen evaluated tested and treated by WPI and their staff including Dr. Fredericks. All costs were covered and we only made the long trip up there because we had been chosen and awarded this from WPI and we were very ill and it presented a ray of hope for recovery of some life quality to my son and me. We made the long exhausting trip with my parents paying for all the fuel lodging and food. They have not yet been reimbursed for their costs. We were not received well by the staff at the WPI clinic and thus went directly to Annette Whittemore office. She personally assured us we would be treated with the utmost courtesy from then on. that we would receive our promised Sponsorship and all that it entailed and had been promised to us. She said to have ALL bills sent to her directly.We returned home and were discouraged to find that they were not going to fulfill the treatment for us. We were made more ill by the stress of the long trip.Then began receiving bills for blood draws we never gave permission for. These totaled over 4600.00 EACH. We forwarded to Annette as we thought the WPI Clinic had just made an error. These bills stated 4600.00 in costs for blood drawn from my son and from me and were marked " OTHER" and no explanation was ever given as to why and what they drew this amount of blood from us for. What they did to us was unethical and we just want them to do what they promised in awarding us the full Sponsorships.I am holding them to their promised Sponsorship and ask that they be held accountable to uphold as well what they awarded us in full.I worked hard for my good credit rating and am hoping WPI and Annette Whittemore will do the right thing and restore this to me.Thank you for your help in resolving this for us. WPI and Annette Whittemore need to honor the full Sponsorhips they awarded to my son and me and restore my good credit rating to me.

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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?

2013

April 3, 2013
1 person found this review helpful

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April 3, 2013
1 person found this review helpful

Odd, isn't it that the Whittemores backed the research until their own daughter had recovered, then they decided not to reveal what cured her and switched to pushing supplements instead of research. Obviously, their real interest was in their own daughter's health, not in helping others who suffer from neuroimmune disorders.

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

None

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

No

When was your last experience with this nonprofit?

2013

April 3, 2013
1 person found this review helpful

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1 previous review
April 21, 2012

These are the same people who owned VIP Dx which sold useless XMRV blood tests to people with Myalgic Encephalomyelitis (M.E.) for hundreds of dollars--AFTER they knew the tests were worthless. Now t... more

April 3, 2013
1 person found this review helpful

This Whittemore Peterson Institute gave people suffering from Myalgic Encephalomyelitis (M.E.), sometimes erroneously called "Chronic Fatigue Syndrome" hope for effective treatment when they published their research paper on XMRV retrovirus being implicated in M.E. However that hope was dashed when Mrs. Whittemore summarily fired the dedicated researcher who had made the research possible, Dr. Judy Mikovits. This was worsened when the Whittemores filed criminal charges against Mikovits for theft of her own notebooks. (That charge was later dismissed.) The saga continued when Harvey Whittemore, Annette's husband, was criminally charged for making illegal political campaign contributions to Sen. Harry Reid, among others. This federal criminal charge is still pending against Mr. Whittemore. Does anyone need to know more to understand that this is not a reputable charity?

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?

2013

April 21, 2012
18 people found this review helpful

These are the same people who owned VIP Dx which sold useless XMRV blood tests to people with Myalgic Encephalomyelitis (M.E.) for hundreds of dollars--AFTER they knew the tests were worthless. Now they say they are doing research and treatment for people with "neuroimmune disease," but I don't believe it. They are the same money-grubbing people who sold the worthless tests. So far they have done nothing to help the people they say they are serving. And now they have their relatives posting good reviews on this website. Unbelievable!

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

April 21, 2012
26 people found this review helpful

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1 previous review
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 t... more

April 21, 2012
26 people found this review helpful

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

October 31, 2011
12 people found this review helpful

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.

April 19, 2011

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April 19, 2011

ME/CFS is a life sentence to a living death. It can be extremely debilitating and torturous and can go on for decades before one has an early demise due to the resulting organ failure. It has robbed so many good people of their lives. It affects children, adults and people of all races, ages, and gender. It is estimated to affect at least 1 million people in the US, which makes it more prevalent (and often more debilitating) than HIV/AIDS. The economic loss of productivity is estimated to be over 10 billion dollars annually. People with ME/CFS are scoffed, ridiculed, and at the very least, not believed. This prevailing attitude permeates society, the medical profession, and our government health agencies. Finally after 25+ years of this abuse, lack of research, and being left for dead, we have the beginning of the first ever translational research/treatment facility. The WPI is a beacon of hope. Not just because they have chosen to take on a very unpopular and politicized health crisis, but also because they are motivated by compassion and all the right reasons. They are truly a light in the darkness.

The Great!

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

Following all the news on ME/CFS for 17 years now. Also being intimately involved as a patient.

Ways to make it better...

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

Nothing needs to be changed with the organization. Rather the world, and especially our government health agencies need o recognize, respect, and fund their work.

April 19, 2011
1 person found this review helpful

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April 19, 2011
1 person found this review helpful

Previously in excellent health, I was diagnosed in UK with myalgic encephalomyeltis (aka chronic fatigue syndrome) in 1992, was told there was no treatment for it and that it would work its way out of my system in about a year. 19 years later I still have ME and there is still no treatment for it. I had to give up work due to the level of disabilty it caused, as it affects almost every organ and system in the body. It is a most insidious disease with devasting effects on health, life-style and livelihood. ME is indiscriminate - anyone can get it, including children as young as 2 years of age. It is heartbreaking that children and young people lose their lives to this disease yet no public funding is provided for biomedical research to find root cause and treatment. I totally trust the dedication and integrity of Whittemore Peterson Institute - their only vested interest is in finding cure(s) for neuro-immune disease. It was set up because the founders' daughter has ME so what better motivation could an organisation have to persevere and succeed? WPI has my full support and gratitude for giving millions world-wide hope for a cure at long last, through its ground-breaking research and now moving on to translational research with the prospect of treatment if it can get the necessary funding.

The Great!

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

I monitor the developments in WPI's research and will glady take part as a test subject if required. I believe that WPI is our best hope for a cure for ME and other neuro-immune diseases.

Ways to make it better...

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

have them receive government funding for their work. The biomedical research they are doing is so long-awaited - for decades now - by so many in US and around the world.

April 19, 2011
1 person found this review helpful

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April 19, 2011
1 person found this review helpful

I've been a ME patient for over 23 years and there was no one that could help me. Since the foundation of the WPI I can have hope again to get back my life...because they are the only ones that really care for patients with neuro-immune diseases and prepared to work very hard to help each and every one of them. I'm from the Netherlands and there's no hope at all for us in not ONE country in Europe.....words will never be enough to express my gratitude to the Whittemore Peterson Institute and everybody that works or helps there!!

The Great!

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

My contacts with them - they take all the time and efforts needed to help you and don't even forget husbands/wifes and children!

Ways to make it better...

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

Not change ONE thing - I only wish I could donate more money, because I'm sure they can use it to do more research thereby helping millions of people worldwide!!

February 27, 2011

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February 27, 2011

Without the amazing discoveries of the Whittemore Peterson Institute, I might have given up. When the publication of the XMRV paper in the journal Science came out, I was so sick and desperate and had no hope. Through their discoveries and their determination to find an answer to ME/CFS, I have regained my hope and my ability to go on.
I will be forever grateful to this organization. They are a shining example of how an institute like this should operate. They put the welfare of the patients first and foremost. That's how it should always be. I thank them from the bottom of my heart...as do my huband, three grown sons and four grandchildren.

The Great!

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

I found out that ME/CFS probably comes from the retrovirus XMRV for which I tested positive. I now know why I've suffered in agony for the last 15 years.

Ways to make it better...

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

I would make sure that they are totally funded so that they could continue doing their amazing work.

February 27, 2011

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Review from Guidestar
February 27, 2011

My huge THANKS to WPI for all they do to find answers and treatments to a range of neuroimmune diseases affecting so many (including several members of my family), which include Chronic Fatigue Syndrome/ME, fibromyalgia, Gulf War Sydnrome and autism. The work WPI does has world-wide influence and provides solid direction for future bench-side research and clinical treatment.

The Great!

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

The work that WPI carries out has such wide-ranging importance and influence that myself and my family members are already benefiting from it (even though we are not patients and have not taken part in their studies). Their work so far, as well as sheer dedication to finding lasting and tangible solutions, provides real hope to myself and my fellow patients.

Ways to make it better...

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

I would not make any changes but would like what they are doing to be duplicated many times over!! Their new clinic will be providing care to people who can travel to Nevada - in an ideal world WPI would have enough funds to open similar clinics in other parts of US and the World.

February 27, 2011

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Review from Guidestar
February 27, 2011

A little over a year ago, I became very ill. Migraine like headaches every day, feeling like I had the flu with body aches, low grade fever and my memory started to deteriorate. I was 43 and finishing up my dissertation for a PhD in history. It took several months before a doctor mentioned "Chronic Fatigue Syndrome" and that day, when I got home, I cried. What an embarrassing diagnosis! Isn't CFS a name for lazy hypochondriacs? How can that possibly explain the seriously debilitating condition I find myself in? My doctors did not think much of the diagnosis either: "It is a wastepaper diagnosis" one said. I spent a lot of time on the internet, trying to understand what was happening to my body and to find a "real" diagnosis.

Eventually I stumbled onto information about the WPI. The WPI was created by a parent of a child with ME/CFS and a doctor who has worked with ME/CFS since 1984 when the major outbreak in Incline Village occurred. They had funded a scientist, Judy Mikovits, who had discovered a new retrovirus in most of the CFS patients she tested.

This retrovirus explains how patients with ME/CFS can have so many symptoms- gamma retroviruses can penetrate genes that control homeostasis.

Less than a year after the WPI published it's major study in the journal Science, scientists at the NIH and FDA confirmed that XMRV is definately associated to a high degree in ME/CFS.

The WPI has continued its research for ME/CFS patients as well as those with autism, chronic Lyme, and other neuroimmune diseases. For such a small operation, they have made a huge impact in the world of these diseases.

They are now getting ready to open a clinic that can treat people with ME/CFS. They are transparent about where they get their funding and what they plan to do with it. They are the model non-profit- putting their constituents first and doing cutting edge research in the face of a lot of institutional naysaying on the part of other organizations that have given little serious attention to this disease.

The Great!

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

This is the only organization that is seriously researching ME/CFS. As such, they have given me the only hope I have that there may be real treatment sometime in the future.

Ways to make it better...

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

Make sure that they had a lot more funding and many more grants.

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