Tag Archives: medical

Email to HHS Secretary-Nominee Burwell:

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.

Observing National Nurses’ Week – May 6-12, 2014

When I was a young woman, I wanted to study to become a nurse, but, at the time, my health thwarted that dream; however, I never lost my interest in all things medical.  I am so glad that nurses are being recognized for the stupendous job they do.

Observing 2014 National Nurses Week:

“Nurses: Leading the Way”
A statement by the Secretary Of Health and Human Services

Nurses are awesome. Tell us why by tweeting @HRSAgov or commenting on HRSA's Facebood page during Nurses Week, May 6-12.“It is only fitting that the theme for this year’s National Nurses Week is “Nurses: Leading the Way.” After all, nurses lead the way in showing an elderly patient how to manage his or her diabetes. They lead the way in making sure their patients – children and adults – get the vaccinations they need. They lead the way in helping our young moms learn how to care for their infants. And they lead the way in conducting research to promote high-quality life for those with chronic illnesses, and to help all of us stay healthy across the lifespan.

And nurses, our trusted advisers on health issues, led the way in reaching out to their patients, neighbors, and families to make sure they enrolled in health insurance coverage through the Health Insurance Marketplace. Nurses, who are on the front lines of health care, know firsthand how important coverage can be to their patients: to their health, their peace of mind, and their financial security.

We’re continuing to rely on nurses to help educate patients, some of whom had never had health insurance before, on how to use their newly acquired coverage to get the vital preventive and primary care they need. Nurses are also helping patients use new health information technology tools to manage their own care and ultimately improve their health.

That is why this Administration invests in workforce development, education, and training for nurses.

As a result of funding through the Affordable Care Act and other investments, the Administration has greatly expanded the National Health Service Corps and the NURSE Corps, two initiatives that provide educational loan repayment and scholarships in return for practice in the nation’s medically under-served communities. More than 3,680 National Health Service Corps and NURSE Corps nurses – including 1,889 nurse practitioners and 1,475 registered nurses – are providing care across the country to those who need it most.

In addition, during the 2012-2013 academic year, the Administration funded the training of 10,600 nursing students through advanced nursing education initiatives. These are just a few of the initiatives that support the education and training of nurses.

National Nurses Week culminates on May 12, the anniversary of the birthday of perhaps the most famous nurse, Florence Nightingale, the original nurse leader.  Please join me this week and all the weeks that follow in recognizing nurses across the country for following in Florence’s footsteps and thanking them for the critical work they do in bringing better care and better health to all Americans.”