Tag Archives: disease

Letter to President Obama re: National Institutes of Health

Tomorrow, I’m mailing yet another letter to President Barack Obama.  This time, it’s in reference to Dr. Francis Collins, Director of the NIH.  There is a workshop planned for September 2014, which, in my opinion and that of other M.E. advocates, should not be taking place.  Please read on:

Re: M.E. (myalgic encephalomyelitis) and Dr. Francis Collins, Director of the NIH (National Institutes of Health)

Dear Mr. President;

Today, my letter is about the planned Pathways 2 Prevention (P2P) workshop, projected to take place September 2014 to discuss the “Role of Opioids in the Treatment of Chronic Pain.”

My daughter is suffering from M.E. Her quality of life is greatly diminished:  she has body pain all the time; suffers horrific headaches; and many other symptoms.

Chronic pain is a huge national problem, and there are many issues associated with opioid treatment. So you would think that NIH would have made an effort to involve stakeholders from across the chronic pain community, right?

There was no patient representation on the Working Group for the meeting. Working Group members provided their input at a meeting held August 28–29, 2013. Multiple advocacy organizations in the fibromyalgia community had no idea the workshop was even happening, including the National Fibromyalgia and Chronic Pain Association. At least one opioid drug manufacturer was also completely unaware of this Workshop – despite having a regulatory affairs office.

I, and many other advocates for ME/CFS, have asked Dr. Francis Collins to cancel the P2P Workshop and reexamine the best way to collaborate with the ME/CFS research and clinical community. The NIH has failed to engage stakeholders in a meaningful and substantive way. The P2P Program is simply not designed to do this, and now there is more proof of that from another planned P2P Workshop.

I think what we’re seeing is indicative of NIH’s mindset. Unlike FDA, which has made great strides towards incorporating patients’ input into decision making, NIH is an ivory tower of researchers with limited history of engaging patients and other stakeholders. It may not even occur to them that they need to do this. NIH is not just failing to engage with ME/CFS stakeholders in the P2P process; NIH is failing to engage with ANY stakeholders through P2P (Pathways 2 Prevention).

In closing, I would like to point out that this planned workshop’s purpose of discussing opioids in treatment of chronic pain has a direct impact on all patients who experience great pain, no matter from which disease they suffer. As an advocate for M.E., I ask that you investigate why no patients’ input is being included in the planned workshop, and why Dr. Collins has approved this project which may harm, rather than help, those who suffer great pain.

Sincerely,

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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.

How the U. S. Government is Abusing M.E. Patient Rights

Anyone who has been following blogs and tweets that highlight the plight of M.E. (myalgic encephalomyelitis) sufferers will know how desperate this fight is.

Myalgic Encephalomyelitis Awareness Blue Ribbon

Myalgic Encephalomyelitis Awareness Blue Ribbon

The US government through the Health and Human Services Department (HHS) and NIH (National Institute of Health) is doing all it can to push down and stop the fight for proper recognition of M.E. as a neurological, not a psychological, chronic illness.

Please watch this video courtesy of Jeannette Burmeister, to view experts, patients, and advocates addressing the IOM (Institute of Medicine) at its first public hearing (it isn’t a long video, but brings out the important highlights).  The IOM has been charged, by the HHS, and with the approval of the NIH, to come up with a diagnosis criteria.  (BTW, it has been suggested that the IOM might even change the name of the disease to “Chronic Multi-symptom Illness,” like they did with the Gulf War Syndrome – what a fiasco for the veterans that was!)

The HHS contracted secretly with the IOM at a cost of taxpayers’ money of $1 million, to convene a panel of experts and non-experts of this disease (non-experts outweigh experts on this panel), to “work” on the criteria.  This is being terribly mishandled by our government, in the face of medical experts, patients, researchers, and advocates, who say “adopt the CCC” (Canadian Consensus Criteria).  Money is the underlying reason why M.E. sufferers are faring so poorly in more ways than one.  Insurance companies don’t want to pay for all the expensive tests that are required to establish diagnoses.

The CCC has been accepted by many countries around the world as their criteria for diagnosing M.E., and it would give verification and acceptance for the more than 1 million M.E. patients in the U.S. (the same number as HIV/AIDS patients) who are suffering with this debilitating disease.

Please do what you can to forward the advocacy for these patients who, for the most part, have lost their lives (literally) and those who have seen their former rich, qualitative, productive lives taken away by this debilitating illness.

And, what is the ray of sunshine in all of this?  We have hope.  Without hope, all is lost.

 

sunshine

Images taken from bing dot com