WPI is excited to host Staci Stevens, MA Physiology, Founder and Director of the Workwell Foundation. Staci is an expert in managing post exertional malaise or PEM, a hallmark symptom of ME/CFS. Staci knows from her own personal journey that a key to managing life with ME/CFS includes learning how to conserve the limited energy that is available to those suffering from this disease. Over the years she has found very specific actions that one can take to help avoid relapses or “crashes” of the illness and its many disabling symptoms.
We hope that you will join us on September 22 at 12:00 PM (PST) for a 60 minute webinar, on Energy Management in Chronic Illness.
Note: The recorded webinar will be available at a later date, for those who are unable to watch at that time.
During this time of worldwide crisis, it is important that you know the WPI remains steadfast in our mission to find answers, provide support to those who are ill, and to educate the world about the devastating impact of neuro-immune diseases.
As responsible and concerned citizens, we must also protect one another from the ravages of coronavirus disease and the loss of life.
Finding effective solutions to very real emergencies requires calm and steadfast attention to the advice provided to all of us through the consensus of experts.
While we wait expectantly for solutions to COVID 19 we should do all we can to support those who are risking their own safety to keep essential services running smoothly. Thank you to the brave doctors, nurses, and frontline responders, and to all of you doing your part to protect the vulnerable.
Your well being is important to us. To better protect yourself and others, please remember to stay safe by wearing a mask, practicing social distancing, and washing your hands.
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Happy New Year,
Thank you for your support of the institute and its mission to conquer neuroimmune disease. While we continue our search for cures, we remain dedicated to caring for the neuroimmune community, through medical care, education, advocacy and outreach.
Because of your generosity, WPI continued to support a medical clinic for neuroimmune diseases in Nevada. This clinic is home to Belgian medical expert Dr. Kenny De Meirleir. After extensive review of his patient charts, Dr. De Meirleir was able to identify and publish a set of biological diagnostics to aid him in the creation of effective treatment protocols for patients at the clinic.
With your support WPI was able to create a patient centered medical fund, begin a collaborative educational initiative for doctors, and gained congressional support for greater research funding. We moved an experienced and growing neuroimmune research program into the University of Nevada’s research community and planned an educational support group to begin later this month.
WPI has created greater public awareness of chronic, complex diseases like ME/CFS, post treatment Lyme, and fibromyalgia through newsletters, emails and online social sites.
Your follows and shares on media sites helped neuroimmune patients around the world know that they are not alone in their fight for disease recognition and medical care.
We are so thankful for you and everything that you do to support our efforts to bring significant progress to this field of medicine.
We hope that 2020 brings you and your loved ones renewed health and greater happiness.
With deepest gratitude,
A Year in Review
WPI is pleased to share some of our key achievements for 2019.
February: Raising awareness and funds through Nevada’s Big Give
Informational memes, created by the institute, provided public awareness of the institute and its mission to find answers for those who suffer from ME/CFS and other complex, systemic, diseases, in addition to raising funds for the work of the institute.
March: Open House at WPI
A large group of interested members of the community attended WPI’s informational open house at the Institute. An interview style discussion with researcher Vince Lombardi and Dr. Kenny De Meirleir followed the opening message by Annette Whittemore in which she described the impact of ME on patients and their families. Attendees were given a tour of the medical offices, laboratory, and executive offices before drinks and food, were served. We hope to make this a yearly event.
April: Lobby days
WPI successfully sought and acquired Nevada’s congressional support for CDC and NIH increase in research funding. We represented WPI at the first NIH national conference on ME/CFS in Bethesda, MD., giving us the opportunity to stay connected to other major leaders in this field while learning more about new research findings in ME/CFS.
May: Governor’s proclamation in support of ME/CFS awareness
WPI requested and received a copy of Governor Sisolak’s proclamation declaring May as ME/CFS Awareness Month. We are deeply grateful to our state leaders and Governor Sisolak for their outstanding commitment to those who are impacted by complex neuroimmune diseases.
Medical Research Breakthrough: Diagnostic markers
The Institute participated in a recently published retrospective study identifying specific biomarkers from hundreds of patient tests that were conducted as part of Dr. De Meirleir’s medical evaluations. These four blood tests, which were found to separate ME/CFS patients from controls with a high degree of specificity and sensitivity, are available to the medical community.
WPI began discussions with the Bateman Horne Center of Utah about future collaborations in an effort to expand medical educational programs within the United States. Plans have been made to offer medical lectures to the local hospitals and a university physician’s group. The feedback from these talks will provide direction for a future medical conference in Northern NV.
August: Current research discussions
We met with the Chair of Immunology at the University of Nevada, Reno, Dr. David Au Coin, to discuss current research in ME/CFS and Lyme disease. Dr. Au Coin is interested in creating a more precise test for early Lyme detection. He has agreed to meet periodically to discuss his research progress and to continue to mentor Dr. Lombardi in his ME/CFS research.
October: Medical conference planning
We began planning a medical conference for 2021 with the help of university personnel and the Medical School Dean. The conference will be held in conjunction with the Bateman Horne Center of Salt Lake City, Utah. The goal is to further educate family practitioners about the disease by pairing symptoms with the appropriate scientific research.
November: Patient support group
WPI began planning a new in-person and online support group for those with ME/CFS and their care-givers the hour long program will focus on various practical issues and will include a variety of guest speakers. This institute sponsored support group is set to begin in late January.
December: Fundraising campaign
WPI’s campaign to raise money for the Gift of Health for ME initiative was a great success. Thousands of dollars were donated and are already beginning to help first time patients who come to the institute to be seen by Dr. Kenny De Meirleir. WPI is also excited to welcome and lend financial support for a new employee of the medical practice within the Center at WPI. He will be the medical practice administrator and assistant to Dr. De Meirleir, making it possible for the doctor to expand his Nevada medical practice.
The Gift of Health is a patient centered grant created to help offset the cost of the initial visit with Dr. Kenny De Meirleir in his medical practice at the WPI Clinic. This medical grant will support patient access to expert medical care in addition to aiding the search for more effective treatments. The Gift of Health grant will be administered on a first come, first served basis, beginning January of 2020. It will exist as long as funding is available.
The Gift of Health grant will cover the first $500.00 of the doctor’s fee for any patient who expresses a need for financial assistance at the time of their first appointment. It is a one-time grant. You may request grant support toward your first visit by filling out the grant form at the time of your medical appointment with Dr. De Meirleir. The doctor’s office will deduct $500.00 from the initial diagnostic fee at the conclusion of your appointment. The patient will be responsible for the balance that is owed the doctor on that day. Patients are responsible for all medical expenses beyond the $500.00 grant, including all medical appointments, laboratory and treatment related expenses.
*It is important to note that diagnostics and treatments of this spectrum of neuroimmune diseases have not been FDA approved and therefore may not be reimbursed by health insurance companies.
*Should the funding be unavailable the doctor’s assistant will notify the patient at the time of a patient’s request for an appointment.
To make an appointment with Dr. De Meirleir, please email his assistant Nossa Van den Vonder at firstname.lastname@example.org.
The Whittemore Peterson Institute held an open house on March 6th for approximately 45 invited guests. In addition to allowing the Institute to thank its generous donors in person, the occasion served as a unique educational opportunity to highlight its medical research efforts.
During the educational portion of the evening, President and CEO Annette Whittemore talked about the origin of the Institute and the negative impacts of neuroimmune diseases on millions of people throughout the world. WPI board member Sam Shad led an informal interview, followed by a question and answer period, with Dr. Kenny De Meirleir, WPI Medical Director and Dr. Vincent Lombardi, University of Nevada, Reno, research scientist. The interview explored the importance of the Institute’s collaborative research program to the discovery of effective medical treatments.
Touring the WPI’s offices, clinic, and laboratory, on the third floor of the Center for Molecular Medicine, allowed for additional engagement and learning opportunities for attendees.
Whittemore Peterson Institute (WPI) representatives joined with hundreds of ME/CFS community members including patients, many of whom risked their health to raise awareness of the critical need for greater levels of research funding from the National Institutes of Health (NIH).
Currently, ME/CFS funding amounts to only $6.50 per person per year, despite the fact that millions remain chronically ill and disabled at a loss of billions of dollars in lost productivity each year. If research dollars were based on the severity of disease and the number of people impacted, the NIH would fund ME/CFS at levels that are 50 to 100 times greater, similar to those designated to MS and Lupus.
We are grateful to Nevada’s members of Congress including Congressman Mark Amodei, Senator Jacky Rosen, and Senator Catherine Cortez Masto; and their staff, who spent valuable time learning about ME/CFS and the many reasons why levels of research funding must be increased. Their support assures us that our voices were heard.
We know that, as research funding levels improve, so too do scientific and medical interest in a particular disease. Interest fosters breakthroughs. Breakthroughs result in treatment discovery and eventually a cure.
With our community’s help, WPI will continue to seek funding equality at the national level.