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Nevada Center for Biomedical Research

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Causes: Health, Philanthropy, Philanthropy, Voluntarism & Grantmaking Foundations, Science & Technology, Technology, Voluntary Health Associations & Medical Disciplines

Mission: To transform scientific discovery into medicine

Community Stories

80 Stories from Volunteers, Donors & Supporters

GeneLouise General Member of the Public

Rating: 4

03/15/2022

I was infected with a tick in 2014, and since I’ve suffered horrible seizures, extreme pain, cervalgia, & depression and anxiety which makes me suicidal. I’m without a home of my own with my full-time student. I adopted her (she’s my half sister in 2011. My physician can’t use a medical code to input Severe Fibromyalgia so it is in her notes. If you can help, I would appreciate anything. I thank you for your time.

1

Rice K. Donor

Rating: 5

02/07/2017

Have attended fund raising events and visited the Facility. The quality of all they do is superior. With the help of donors and supporters they may see a breakthrough in auto immune diseases.

10

Lois20 General Member of the Public

Rating: 1

09/19/2015

WPI has not followed through on its promised research and clinical medical resources. In checking the bona fides on the WPI website, the organization takes creative liberties with its staff's purported credentials. For example, Mr. Hunter did not ever work for NASA; the man with the same name that did work there is deceased. The laboratory tests that have been offered at various times through WPI and its affiliates are not validated. Accounting procedures are wanting. WPI solicited patient donations for certain projects, but the patient donations were not applied to the projects, which soon fell by the wayside. WPI is publishing purported research that is obviously weakly derived from prior research, and of poorer quality. The facility, constructed with public and some additional funding, appears to be vacant on any given day. WPI had the opportunity to get real answers, but chose appearances over substance.

1

ConnieW Donor

Rating: 5

08/08/2013

I'm continually encouraged by the work the institute is doing to help patients with neuro-immune diseases. The institute is committed to finding answers. I'm proud to regularly donate to the institute.

3

justdotherighthing Client Served

Rating: 1

07/29/2013

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.

2

kati.debelic General Member of the Public

Rating: 5

04/03/2013

The Whittemore-Peterson Institute provides hope for patients with ME through hard work of research. I am thankful for the Whittemore and their research team led by Dr Lombardi because their hard work to build the institute from ground zero is paying off.

Recently Dr Lombardi published a paper in collaboration with other scientists from around the world. This cutting edge work provides new clues for patho-physiology and ethiology of our illmess. i am sure more work is under way and I am looking forward to the next publication.

i am convinced that the work of WPI will make a difference for all patients. Thank you and keep upthe good work!

Comments ( 1 )

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Whittemore Peterson Institute 04/04/2013

Thank you Kati for your very helpful and kind review.

2

pgf1 Client Served

Rating: 1

04/03/2013

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.

Comments ( 1 )

profile

Whittemore Peterson Institute 04/04/2013

The information contained in this review is untrue. The Whittemores and the institute continue to be committed to researching neuro-immune diseases with the goal that the institute’s research will lead to effective treatment strategies and improved patient care. Neither the institute nor the Whittemores “push” supplements as this comment states.

3

Sam Shad Board Member

Rating: 5

04/03/2013

I became involved with the Whittemore Peterson Institute for selfish reasons. My wife suffers from Fibromyalgia and has done so for over 30 years.
Having seen the devastating effects of this disease close up I was excited when WPI came into existence.
Through the passion of Annette Whittemore's efforts to help her daughter I have hope that in the not to distant future there will be treatments and perhaps even a cure for this debilitating disease.
I have never been around a more passionate group than the staff at WPI. They will make it happen for all of us.
Sam Shad

Comments ( 1 )

profile

Whittemore Peterson Institute 04/04/2013

Thank you Sam for your review of Whittemore Peterson Institute. We are very lucky to have you as a board member.

Review from Guidestar

2

David Spangler Client Served

Rating: 1

04/03/2013

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?

Comments ( 1 )

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Whittemore Peterson Institute 04/04/2013

Unfortunately, Mr. Spangler is misinformed on a number of topics, and his comments are detrimental to the reputation of the institute. Dr. Mikovits was a member of a research team, not the only researcher at the institute. She was terminated for insubordination when she refused to return a colleague's research materials. As president and CEO of the institute, Annette Whittemore reported the theft of valuable institute property that was missing following Dr. Mikovits’ termination. The police investigated the matter and the district attorney’s office determined to pursue a criminal case against Dr. Mikovits. Finally, we think that it is important to emphasize that private matters involving Mr. Whittemore have nothing to do with the institute. Mr. Whittemore is a generous donor and a co-founder of the institute, but he has no responsibility within the institute.

Previous Stories
19

Client Served

Rating: 1

04/21/2012

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 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!

2

Richie1 Volunteer

Rating: 5

07/26/2012

It's a shame that personal comments by overly emotional individuals are allowed on Guidestar, jeopardizing the rating of an institute that is only trying to help the ME community. WPI's goal has always been to help severly ill people by solving the mysteries surrounding ME. WPI has helped legitimize a seriously debilitating disease and I believe they will continue to make a difference.

Comments ( 1 )

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Whittemore Peterson Institute 04/04/2013

Thank you so much for your very kind review of Whittemore Peterson Institute. Thank you for your hard work and dedication to our volunteer committee as well.

2

BopPop Donor

Rating: 5

07/26/2012

I think that the WPI and its founders/employees are trying their very best in a very difficult field. I am glad that they are persevering despite the theft of their documents and continue to do research regardless of people's misunderstandings.

1

LeslieL. Volunteer

Rating: 5

07/24/2012

I have personally volunteered for WPI and I am confident that they are making a difference. It is sad that there are such harsh and bitter reviews. Just remember that most people review to complain rather than to say something positive.

2

Kristin F Volunteer

Rating: 5

07/24/2012

I am a proud volunteeer and supporter of the Whittemore Peterson Institute. From the day-to-day work to the annual fundraiser event "I Hope You Dance", I have seen how many lives this organzitation positively touches and gives hope to so many people that didn't have answers before.

2

Peter1212 General Member of the Public

Rating: 5

07/24/2012

The Whittemore Peterson Institute is dedicated to finding answers for people with diseases that for most of their lives, were told do not exist. My sister has had ME/CFS for over 20 years, and the WPI remains one of the only places she can turn to for answers and real hope for the future. Thank you WPI for the work you are doing on behalf of my sister, and all the patients looking for answers!!

Review from Guidestar

8

MAQ1 General Member of the Public

Rating: 1

04/27/2012

What a huge disappointment Mr. & Mrs. Whittemore have been on the whole ME (CFS) community. I feel bad for everyone who has invested in them. Hope is still out there, just no longer at the WPI.

Comments ( 1 )

profile

Whittemore Peterson Institute 04/04/2013

We are sorry that you feel this way. The Whittemore's continue to support the WPI, on behalf of all those who suffer from neuro-immune diseases, through their donations and hard work. The Whittemore's past business related conflicts have been settled and have not interfered with the important work of the institute or its critical mission. To learn more about the institute please visit our website. If you have other questions, comments or concerns please write to info@wpinstitute.org. Thank you, WPI staff

13

Jacks Donor

Rating: 1

04/24/2012

Visited the WPI a year ago, but picked up on a few red flags: inquired about Dr. Peterson's office, but there wasn't one. They failed to mention he was in no way benefiting from the institute. And, took our donations. Also; there were no beds anywhere to be found, while Mrs. Whittemore's office had spared no expense! For the Whittemore's to even be associated with the Seeno family speaks volumes... Crooks!

13

barbarak600 Donor

Rating: 1

04/24/2012

The WPI have grossly mislead the ME community. They offered us hope in the form of research being done by Dr. Judy Mikovits. The patient community donated funding in the hope of receiving some treatment, donations many could ill afford but did it in the hope of a better future. We also spent precious energy voting for charitable donations for them.How we were taken in. We are left with no hope of treatment after the firing of Dr. Mikovits. The WPI are unwilling to return our donations which we now believe did not even reach the research lab. To say they have damaged the ME community is putting it mildly and in my own opinion the raise in ME suicides during this time I would cite WPI as one of the causes. Shame on them using their sick daughter to sucker money into an already very wealthy family. How can this fall under a non profit organisation when they were selling invalidated test for PROFIT?

11

Carole C. Donor

Rating: 1

04/24/2012

The WPI has damaged ME Research attempts and many in the ME community have gone dramatically downhill healthwise in the past few months because of the WPI's ineptitude, callous treatment of patients and overall self serving attitude. I was a devoted donar and campaigner for all that I thought the WPI was until they showed their true colours sacking, dragging through the courts and jailing their only real hope of finding what ME really is. I will never support WPI again...it has done so much damage without even realising what they were doing. They are oblivious to this day, continuing to send out thank you cards to people who have openly voiced their dissatisfaction with the WPI. They are not to be trusted!

15

kravitz Professional with expertise in this field

Rating: 1

04/23/2012

This "charity" is run by a socialite whose husband was one of the most powerful political lobbyists in Nevada. Now Harvey Whittemore's house of cards is falling, and it is taking his wife and her Institute along with it. Before anyone gives a dime to this charity, he should google "Harvey Whittemore" and "Annette Whittemore" and read the results. Even if they wanted to do meaningful medical research, they would not be able to accomplish that since they fired their only competent research scientist in Sept. 2011.

17

Julie50 Donor

Rating: 1

04/22/2012

The WPI entered the world scientific stage in October 2009 with the discovery of a retrovirus, then known as XMRV in patients with ME/CFS. The discovery gave hope to millions suffering from neuro-immune diseases. The controversies that followed attest to the fact that truth is stranger than fiction. No one could have dreamed up what has happened. After encouraging family and friends to donate to WPI as I had, I now refuse to donate. The WPI has broken its trust with patients and I cannot see that trust ever being restored. We should have taken not when Dr. Dan Peterson left WPI shortly after the publication. He knew things the rest of us did not.

27

Wildaisy Client Served

Rating: 1

04/21/2012

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.

Previous Stories
13

Client Served

Rating: 1

10/31/2011

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.

3

marni Volunteer

Rating: 4

04/21/2012

I have volunteered with WPI for many years now. There are many different times during the year to help. Whether it's asking others to donate, advocate on a patients behalf, or help get auction items for the annual I Hope You Dance event, they always appreciate the help. WPI is trying to find answers for my family members who suffer from neuro-immune disease. I am grateful to give back anyway I can as they give so much to me. This place gives me hope. That is a wonderful gift to give and receive.

21

dont wanna say Donor

Rating: 1

10/31/2011

Since the firing of Dr. Mikovits the Whittemore Peterson Institute no longer has a retrovirologist on staff. Other remaining staff members are not qualified to carry out the research.

Since the firing of Dr. Mikovits the Whittemore Peterson Institute has neglected to answer numerous questions to the satisfaction of patients, donors, supporters, and the general public. The closing of the Whittemore Peterson Institute's facebook page has served to further severely restrict patient inquiry and two way communication. This lack of transparency is disrespectful and unacceptable.

I have changed from an ardent supporter to no longer supporting the wpi.

2

Nicola R. Donor

Rating: 5

04/27/2011

The Whittemore Peterson Institute carries out research into Neuro-immune disease and will soon open a clinic to serve patients. People with neuro-immune diseases such as myalgic encephalomyelitis ("CFS"), fibromyalgia, atypical MS and autism have long been ignored or poorly served by medical and research institutions.

I have an MS from Cornell University and an MA from the University of East Anglia in the UK. Contracting ME while working in East Africa in 2007, my career was brought to a sudden halt. I now have hope for recovery thanks to the work of the WPI. Like many other patients, I support them with a small monthly donation. However much larger contributions are needed if research is to continue, and for the clinic to serve the approximately one million + patients in the US with neuro-immune disease.

1

Ross Client Served

Rating: 5

04/19/2011

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.

1

Jo B. Client Served

Rating: 5

04/19/2011

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.

2

Thea F. Client Served

Rating: 5

04/19/2011

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!!

3

Little W. General Member of the Public

Rating: 5

04/18/2011

Other organizations, especially those who deal with chronic illnesses, should take note. WPI gives us something we have never had before: HOPE.
May God bless each and every one of you.
Thank you for all you do.

1

Karen B. General Member of the Public

Rating: 4

04/18/2011

When no one else would do the hard work to help all those afflicted with ME/CFS, this organization decided to tackle the illusive answers. They have been dedicated to helping the sufferers find relief from a life stealing illness even when some in the scientific community did not back their hard work. They have persevered with more science and more research, and are doing incredible work toward helping millions! I am very grateful for these goals and WPI's steadfast dedication.

2

Brian Volunteer

Rating: 4

04/12/2011

I love volunteering with this organization . These are the kindest hardest working people I know. They are so helpful and thankful for anything you can do. They personally write , call and interact with as many people as they can. They receive 100's of emails Amd phonecalls and one person I watched listened to a patient for 30 minutes who literally said she had no one else to talk to. I've volunteered before but WPI makes you feel at home.

2

Flo Henson Volunteer

Rating: 5

04/12/2011

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."

Review from Guidestar

1

CFSpatient Donor

Rating: 5

04/11/2011

The WPI is the best institute wordwide to research and advocate for patients with ME/CFS.

Their dedication and honesty should set an example for others in the field.

I support their work 100%.

Review from Guidestar

2

hindssite General Member of the Public

Rating: 5

02/28/2011

WPI discovered XMRV and as a result put to rest the idea that Chronic Fatigue Syndrome and Autism are psychiatric conditions. They want to find the answers for all of us affected. They need the funds to do the science so they may continue their efforst bring new treatments for both of these conditions and possibly all kinds of cancers They are extremely dedicated to finding the answers that will give our children a future.
Marcia Hinds

Review from Guidestar

Zach General Member of the Public

Rating: 5

02/28/2011

WPI's claim to fame is the discovery of XMRV in ME/CFS and a growing list of neuro-immune diseases such as Fibromyalgia, chronic Lyme, Gulf War Syndrome, autism, Parkinson's, etc. The list is growing.

Interesting is that they also found it in the general population at a 4% rate. That's about 12 million people in the USA. This is a sleeping epidemic of Gargantuan implications.

WPI is the right organization to investigate further into the effects of this retrovirus (XMRV) in neuro-immune diseases.

Review from Guidestar

2

Tami Rainmom Volunteer

Rating: 5

02/28/2011

WPI is a small, but mighty group of dedicated scientists and doctors who are one of the few institutions actually looking at the biological basis and science behind many neuroimmune illnesses including CFS/ME, autism, parkinson's, MS, and more. Looking at how the rates of "autism" have soarded- now estimated to be affecting one in every 91 children in the US, it's clear there's an infectious basis. While other organizationss waste time and money looking to exercise the demons from the CFS patients, WPI found a retrovirus that's causing persisten infection. This is a ground breaking discovery that urgently needs and deserves funding. It's esitmated 17 million individuals are living, and dying of CFS/ME- and that's not including other neuro-immune disorders like autism and MS. There is no worthier cause.

Review from Guidestar

1

naname Volunteer

Rating: 5

02/27/2011

I have been on disability over 15 years and until WPI discovered XMRV I had no hope of finding a cause for my illness in my lifetime. I tested positive for XMRV so every time someone tries to bury it the WPI fights back. They are my hero!

Review from Guidestar

1

Ellen Donor

Rating: 5

02/27/2011

WPI is an excellent institution. It is performing cutting edge research into neuro-immune diseases and will be opening clinical faciilities later this year.

Review from Guidestar

1

Pat Mayer Client Served

Rating: 5

02/27/2011

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.

1

lukinamama Client Served

Rating: 5

02/27/2011

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.

Review from Guidestar

1

lulu Client Served

Rating: 5

02/27/2011

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.

Review from Guidestar

1

R--G General Member of the Public

Rating: 5

02/27/2011

The team of dedicated scientists at the Whittemore Peterson Institute is working to find a cure or effective treatment for the neuroimmune disease ME/CFS. They have provided hope to the estimated 25% of suffers who are severely affected, bedridden and unable to communicate or tolerate light and sound. My family has benefited from the WPI's ground breaking research published in Science and its informative lectures delivered over the web.

Review from Guidestar

1

gto3 Volunteer

Rating: 5

02/26/2011

The WPI is a shining star in a very dark world!

Thank you WPI for your groundbreaking work!!

Review from Guidestar

dfratt General Member of the Public

Rating: 5

02/21/2011

Our deepest thanks to the WPI for accepting our Grandson, Ryan Baldwin, for XMRV testing. The results provided to our family were
extremely beneficial . I hope that the WPI also gained additional knowledge concerning ME/CFS through the use of his blood sample.

The results helped in our fight to free Ryan from the Department of
Social Services' (DSS) unauthorized medical experiment that they
conducted for 10 months, attempting to prove that he was not truly
ill and did not have CFS.

AlNZ General Member of the Public

Rating: 5

02/15/2011

This little organization changed the world for me by coming out with its paper published in Science magazine.I have suffered for nearly 30 years with ME/CFS and having the Whittemore Peterson Institute on our side fighting to legitimize this illness has meant so much.To have this disease is to have suffered in the most part with disbelieved and isolation with little hope of any change that situation.Now they give us all hope.
This is a very hard illness to understand from the outside as we look so well.But like a New car with no engine or battery as good as it looks on the outside we are going no where and nothing works the way it should.
As hard as the illness is and it is very hard and disabling its not helped by the lack of others understanding of just how disabling and hard it is.Hopefully we are a little closer to having the understanding we deserve as a result of the work of the institute and all its wonderful staff.

1 Laura Tattoo

Laura Tattoo Donor

Rating: 4

02/15/2011

WPI stands as our only hope for treatment for ME, for science that doesn't mix in psychobabble, for answers to so many of today's "mystery" illnesses. We are not lying on our couches and beds because we want to; most of us had active, fulfilling lives before we because sick with ME. I had just found a job I really loved and one I was ready to work for until retirement, as a claims adjudicator and benefits counselor at the VA, when I first developed chronic pain and a bit later, a terrible weakness and sickness. I hung on for two years, then cried my eyes out when I had to retire. For 12 year I felt hopeless and uncared for. WPI came along with their XMRV study and gave me the first hope, and I've held onto that hope, even though all the forces seem aligned against us. We will prevail but we need grants for more research. Please, consider donating whatever you can to WPI. Thank you to all. xoxoxoxo

Review from Guidestar

jillnz General Member of the Public

Rating: 5

02/15/2011

In 2009 this tiny non profit organisation published a paper in Science which stunned the world with it's discovery of a new human retrovirus - XMRV- and its high association with the devastating illness- ME/CFS. For too long this illness has been unresearched and underfunded by governments. The WPI has given millions of people hope and stirred up the medical community to finally take this disease seriously. They need all the money they can garner right now - just as they are on the brink of discoveries that hopefully will not only help us - the patients with ME - but also other patient groups with neuro -immune illnesses. I wish they could win the lottery - they an all star crew! Jill , New Zealand

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jlhank80 Donor

Rating: 5

02/14/2011

I am a mother of a child affected by a neuroimmune disease and I am also affected myself. The Whittemore Peterson Institute works tirelessly to serve a community affected by a disease that is forgotten and misunderstood, I have so much hope for a cure because of what they are doing. Thank you WPI!

mariemicheles Client Served

Rating: 5

02/14/2011

The Whittemore Peterson Institute has given hope to over 17 million patients worldwide who suffer from ME/CFS through it's scientific research findings. Their goal in continued scientific research and the development of treatment for many neuroimmune diseases are lofty and yet reachable. I live each day with hope of a better life because of the work being done at the WPI/

Review from Guidestar

Allspice Donor

Rating: 5

02/14/2011

The WPI is the only organisation which gives hope to those of us suffering from ME/CFS. Without them we would feel no hope of ever finding a cause and treatment.
They are truly unique in a capitalist world which only looks to profit.
They work purely to help the very ill patients. The hope they provide is keeping people alive.

Review from Guidestar

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CWhite General Member of the Public

Rating: 5

02/14/2011

Ray of light in a dark world. That's what the research and the ethos of the WPI have given to the area of ME/CFS/CFIDS. They have given an idea of how ME might be viewed in future and given the area of research into the etiology and pathology of ME a new goal, one that is focused on the reality of the disease. There is now hope. Hope for a diagnostic test, hope for treatment and above all hope for ME patients, that the world will see ME in a new light. The light they have known all along with some others that shared this view. The WPI believed in their patients and believed in the goal that one day all would share the same view too.

Thank you to all who helped make the breakthrough possible.

Review from Guidestar

Heidi B. Donor

Rating: 5

02/14/2011

I have had ME/CFS for 16 years and the WPI is the first and only institute designed with pure science to achieve diagnosis, treatment and hopefully a cure for this awful disease. Annette Whittemore and Judy Mikovits have more strength of character and spirit than most anyone I have ever known. They have already rocked the world by the discovery of XMRV's association with CFS, and they will not stop there. This institute is a force to be reckoned with and will not stop until their goal of healing people with neuroimmune diseases is reached.

Review from Guidestar

Paul K Client Served

Rating: 5

02/14/2011

WPI have given Neuro-Immune sufferers great hope for the future, as a sufferer of ME/CFIDS I cannot begin to thank them enough for their hard work and dedication to finding a cure. Paul.

Review from Guidestar

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Fred General Member of the Public

Rating: 5

02/08/2011

This institute has made breakthroughs in research that nobody else could in 25 years. They gave patients hope where there was none. Please support the WPI so they can continue their groundbreaking research, and find the cause, treatments and cure for ME/CFS.

Review from Guidestar

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Garrett W. General Member of the Public

Rating: 5

02/07/2011

I got sick with mono my senier year of college. I never recovered. It took 7 years of Dr.'s visits to get diagnosed with chronic fatigue syndrome(ME/CFS). It's been 10 years, I still live at home with my parents and my college degree is meaningless considering my poor health. The problem is general physicians and many specialists have never herd of ME/CFS.
The Whitmore Peterson Institute has helped illuminate this misunderstood neuroimmune illness with their ground breaking research. They have shown the world that this illness is real and people really are suffering greatly. The Whitmore Peterson Institute has given millions of people hope to hold on just one more day. I keep telling myself that there will be a light at the end of this tunnel all thanks to the WPI.

Review from Guidestar

Lisa F. Client Served

Rating: 5

02/06/2011

Our family cannot thank WPI enough for their wonderful work. They assited our family in 2010 and have continued to bring hope to many people throughout the US and world with their research in neuroimmune diseases. We must find funding to assist in their world cause and I ask that people support them and their continued groundbreaking research.
When it comes to assisting people- WPI deserves the recognition and thanks for helping people who at one point stood hopelessly awaiting research in their otherwise unrecognized, ignored and serious debilitating conditions.
Lisa Baldwin, BSW

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Nancy General Member of the Public

Rating: 5

02/05/2011

The Whittemore Institute (WPI) made a remarkable medical research breakthrough within two years of its existence. It should be remembered that Whittemore Peterson Institute have input from scientists with decades of experience in retrovirology with the National Cancer Institute. WPI fully deserves Federal funding for its breakthrough high quality work on the human retrovirus XMRV. I must say that our british research is put to shame by the advanced work from the Whittemore Peterson Institute, which is a model of the new human-friendly approach to high quality bioresearch that should be followed elsewhere.

Bona Donor

Rating: 5

02/05/2011

The work done by the WPI is vital to so many people, perhaps 50 million world wide with neuro-immune disease. They are caring, clever, and world class. They need the money!

Review from Guidestar

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hope4treatment Donor

Rating: 5

02/05/2011

WPI is working very hard to find the cause and treatments for neuro immune diseases like ME/CFS. I have been bedridden for over 25 years from this devastating illness. A couple other friends became ill at the same time I did. Another close friend of mine died from this disease. Most do not understand the seriousness of the illness -- WPI does.
The vast majority of the medial community ( yes ! there are a handful of wonderful exceptions) turned there back on this illness which effects over 1million Americans. WPI is on the forefront of groundbreaking research w/ linking XMRV to ME/CFS. There is now hope for all who suffer from this and other neuro immune disease. Keep up the hard work WPI and don't let the medical politics get you down. We need you !

Review from Guidestar

1

Debbie A. Volunteer

Rating: 5

02/04/2011

I am impressed with The Whittemore Peterson Institute because of the Whittemores dedication to finding a cure for M.E., along with other neuroimmune diseases such as autism, MS, Fibromyalgia, etc. The Whittemores have personally donated over 3 million dollars of their own money to fund the research into the cause, cure, and/or treatment of M.E.

For the first time in 27 years, patients with M.E. have hope, and this is because the WPI has dedicated themselves to finding a cure for M.E. WPI is the one true organization who truly represents all of us with M.E. worldwide.

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Reynolds General Member of the Public

Rating: 5

02/04/2011

The Whittemore Peterson Institute has accomplished a great deal in a very short amount of time. They have the greatest respect for those suffering with this debilatating disease. I admire the work that they do and hope that they will be blessed financially so their work will continue.

Review from Guidestar

kbaker1288 General Member of the Public

Rating: 5

02/04/2011

This organization has given my husband hope for treatment through it's excellence in research. It is the only institution in the world completely ocused on curing ME/CFS a very disabling NueroImmune disorder affecting between1-4 million US citezens.

Review from Guidestar

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Jean Grant Volunteer

Rating: 5

02/04/2011

The WPI is our best hope at this time. They continue to try to help people with CFS in spite of not receiving grant money from the government. They have given me hope that answers will be found in my lifetime. I thank God for the WPI and give them as much money as I can afford. The new clinic they are starting will not only give good care but the money they make will go directly to research.

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Jill McLaughlin Volunteer

Rating: 5

02/04/2011

The WPI has accomplished more for patients with ME in the past few years than all organizations or the federal government combined had accomplished in the past 20. It represents the best of innovation and sound science which, along with the dedication of the Whittemore family, has provided the first real hope for appropriate diagnosis, recognition and treatment. And with the scientific momentum that has been achieved in a relatively short time, even a cure may well be in sight.

Their breakthrough discovery of gamma retrovirus in many patients with neuroimmune disease has profound implications for public health and the safety of the blood supply as well. It is imperative to provide the utmost support for this institute and their research to ensure that their work continues as rapidly as possible.

Review from Guidestar

1 wingfingers

wingfingers Volunteer

Rating: 4

02/04/2011

Although everyone who catches this disease (ME) knows it is a caused by a virus, and in fact we have known it is a retrovirus since Dr Paul Cheney showed his MRI scans of patients to an MRI expert 25 years ago, this has been suppressed by both the US and UK governments for reasons we can only speculate on. It's thought that it suited them to keep the disease in the dark and call it "psychological" as this would be cheaper to deal with for the insurance companies (although the British NHS is not insurance-based so it has cost us a lot more). Along comes the Whittemore family and they recruit Dr Mikovits who immediately sees the disease as a retrovirus. She found it, classified it, cultured it, and even sequenced its genome. All scientists and doctors worldwide should be jumping up & down with glee at the discovery. But the Black Force is at work to delay & suppress it. It happened once before - 20 years ago, Elaine DeFreitas at the famous Wistar Institute found the retrovirus and they succeeded in suppressing that. The Whittemore Peterson Institute deserve full credit in the face of adverse conditions such as total lack of State funding and also much resistance from denialists and psychiatrists.

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joy1 Advisor

Rating: 5

02/04/2011

My persona before ME was that of a scientist, looking at the effects of violent films on children under 10 years of age. It was new then and no one took it seriously. So I rate the research for the WPI as brave, uncompromising, and above all compassionate to the ME world. I can give them no higher accolade, because there are no words for the bravery, knowing how their research could be vilified by those who do not want the truth about ME made public.
In my family we have three ME, one suspected case, and Parkinson's disease.
Having ME in the UK means no support, and many are economically affected, and are socially islolated.
I work on a ME help line and run a group for ME people, and it would appear that the numbers of ME people in my area are raisng exponentially.

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Merry General Member of the Public

Rating: 5

02/04/2011

Having been ill for decades with ME/CFS and seen my government do next to nothing about this illness, I had given up hope that I would see any real progress in research in my lifetime. But when I heard in the fall of 2009 about the WPI and Dr. Mikovits's XMRV research, my hope was restored. WPI's commitment to the ME/CFS community is inspiring. I am very grateful to everyone at WPI.

Review from Guidestar

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lorddarkhelmat Client Served

Rating: 5

02/03/2011

The WPI and it's research team has made one of the great discoveries of 2009 linking the retrovirus XMRV, and related viruses, to Myalgic Encephalitis {aka CFIDS}. What they have accomplished is astonishing and will sure to benefit many people worldwide.

Review from Guidestar

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moigo General Member of the Public

Rating: 4

02/03/2011

I have not had a direct experience with Whittemore Peterson Institute. But the research of Drs. Mikovits and Lombardi at WPI into the link between human gammaretroviruses and neuroimmune illness has given me hope for validation and treatments. I had a slow crash with what is belittlingly known as Chronic Fatigue Syndrome. This dramatically restricts what one can do and imposes heavy flu-like symptoms. In addition to benefits for patients, it is also vital that society become aware of how these retroviruses are transmitted and how best to test for them so as to protect the blood supply. The Whittemore Peterson Institute is at the forefront of such research.

Review from Guidestar

frenchtulip Client Served

Rating: 5

02/03/2011

Although the WPI has been in existence only a few years, it has already found a link between ME/CFS and the third human retrovirus, XMRV. A high percentage of persons with ME/CFS tested positive for XMRV. This research was done in collaboration with the Cleveland Clinic and the National Cancer Institute. This has created much interest within the scientific community, with other researchers eager to study XMRV. Harvard, Cornell, NIH, and the FDA have done research confirming the findings of the WPI and collaborators. The WPI's findings have focused much needed attention on ME/CFS, a poorly understood neurological illness affecting one million Americans.

Review from Guidestar

bakercape Client Served

Rating: 5

02/03/2011

The WPI is the only real hope in the world at the moment for 17 million patients with ME and Chronic Fatigue Syndrome. They are nothing but pure excellence.

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Kristi M. General Member of the Public

Rating: 5

02/03/2011

I have been sick with ME(CFS and Fibromyalgia for 4 years. In 2009, the Whittemore Peterson Instute published an important finding that my illness may be linked to a retrovirus like HIV. In August of 2010, I visited the Whittemore Peterson's Grand Opening on the Campus of the University of Reno. I was so impressed with the facility and research taking place. I met the Whittemore's, Dr. Mikovits, Dr. Lombardi and many of the volunteers. They all gave me a new sense of hope and confidence that I will be well again one day soon. They have changed the lives of millions around the world suffering from Neuro-Immune Diseases like mine in just two years! Please show your support and donated to this important institution! http://wpinstitute.org/

jimbob General Member of the Public

Rating: 5

02/03/2011

The Whittemore Peterson institute has basically kept me alive since October, 2009 with their discovery of a new human retrovirus. This has given me new hope, that possibly I won't have to feel this sick for the rest of my life. They are the most caring and compassionate people one could hope for when suffering from a terrible illness. I can't thank them enough for all their hard work during such trying times. James Hall

Review from Guidestar

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MEKit Donor

Rating: 5

02/03/2011

Millions of people world wide are debilitated with an illness that has no treatment, and little meaningful research and funding from our federal health agencies.

The Whittemore Peterson Institute has taken it upon themselves to conduct solid research and seek effective treatment for M.E. Because of the work they do, I have hope that I may be able to recover from M.E. and one day lead a normal life.

Review from Guidestar

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Sarah Lawry Donor

Rating: 5

02/03/2011

WPI stands alone in it's approach to the science of ME and the suffering endured by millions - as a result of the disease and the policy of UK and US governments. Those with ME have been their own researchers, physicians and donors for research for decades. I have very little state benefit but send what money I can to WPI whilst doing all I can to campaign for a change in policy. To say that the WPI is like a beacon in the dark is an understatement - and there are more than 17 million ME sufferers that are hidden from most people's view. Please help the WPI to help us, the sufferers, for there is virtually no other organisation/ charity that can do such an effective job. The Lombardi et al 2009 paper was groundbreaking research and may lead to treatments for other folk effected by XMRV/ MLV such as those with autism, prostate cancer, atypical MS, Fibromyalgia, Lyme Disease and others.

Review from Guidestar

Jane Client Served

Rating: 5

02/03/2011

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.

Review from Guidestar

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Mark General Member of the Public

Rating: 5

02/02/2011

This institute has done stunning work in the face of much adversity. The best thing to have happened in the US in the past 50 years.

Review from Guidestar

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Sasha General Member of the Public

Rating: 5

02/02/2011

I am one of millions worldwide diagnosed with myalgic encephalomyelitis (also known as CFS), and have been mostly bedbound or housebound for 25 years. Such severity and chronicity of illness is not unusual for this condition yet despite the enormous burden for sufferers, families and society, little research is done and we are left without any effective treatment.

In a short period of time, the WPI has discovered the possibility that a new retrovirus (XMRV) might be causing our illness. This has transformed the situation; suddenly, top-level researchers such as those virologists who discovered Hepatitis C have entered the research field and for the first time in my lifetime, I feel that there is a chance of some help for us all.

I live in the UK and like other countries around the world we are looking to the WPI to help. Our own governments and research institutions are doing nothing. It is impossible to overstate the importance of the WPI in the hopes of millions of patients all over the world.

Review from Guidestar

Justin Reilly Professional with expertise in this field

Rating: 5

02/02/2011

Just a couple of years after its founding, WPI is the clear world leader in the science of neuro-immune diseases including ME. They were founded with a $5M donation from the Whittemore family, whose daughter Andrea suffers from ME. They do incredible high-level science, collaborating on studies with NCI and Cleveland Clinic. Their work has been also been confirmed by NIH, FDA, Harvard and Cornell Med Schools.

Unfortunately, NIH has not granted WPI any money, so it must rely on patient donations. PLEASE SUPPORT WPI any way you can including financially!

Review from Guidestar

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