Dear Secretary-nominee Burwell:
As you assume the important role of Secretary of Health, I want to be among the first to welcome you and urge you to fulfill President Obama’s directive to elevate the priority of ME/CFS or (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) at the National Institutes of Health and HHS.
I, and so many sufferers and advocates, prefer the name M.E. (myalgic encephalomyelitis), and prefer leaving off the CFS (which is the more common name). This is because this debilitating disease is actually a multi-symptom illness, and referring to it as a “fatigue” type of illness is doing it, and millions of sufferers, a disservice. Also, it causes the world’s medical and political communities to misunderstand M.E., and to perpetuate this misunderstanding. The World Health Organization (WHO) recognized this disease as M.E. – myalgic encephalomyelitis.
In 2012, President Obama wrote to Courtney Miller saying he asked NIH to do more scientific research on ME/CFS, fulfilling a promise he made her at a Town Hall Meeting in Reno, Nevada. Her husband has been severely ill with ME/CFS for years. President Obama’s Promise was the first glimmer of hope that our government would approach this illness seriously. My daughter suffers from it, too.
ME/CFS affects more than 1 million Americans like my daughter. It costs the U.S. government and our economy more than $20 billion annually in disability, Medicare, lost tax revenue and lost productivity, according to statistics. It is as disabling as end stage renal failure and late stage AIDS. There are no FDA approved treatments to relieve patients’ suffering.
NIH only spends $5 million per year on scientific research on Chronic Fatigue Syndrome – less than when President Obama made his promise – while it spends $115 million annually for Multiple Sclerosis. Because of NIH’s commitment to MS research, there are now 9 FDA-approved treatments and MS patients can lead productive lives. That’s what my daughter and millions of others need. She needs a federal commitment to research ME/CFS. I ask you to immediately execute an important recommendation made by HHS’ Chronic Fatigue Syndrome Advisory Committee — that NIH issue an RFA (Request for Applications) for $7-10 million for researching biomarkers, etiology and treatments for ME/CFS.
My daughter, and millions of sufferers, have cognitive problems, deep pain, extreme exhaustion, immune dysfunction, digestive difficulties, terribly severe headaches and, quite often, cannot tolerate light or sound. You have the power to help her get her life, her health and dignity back. Please commit to a stronger federal response to her health crisis, and that of so many others.
Thank you for your attention.