The Joint Request from the ME/CFS Community for Action

This is the text of the letter that was read at the CFSAC meeting on June 13th, 2012.

Please read the letter, think about it and give us feedback on it.

Feedback can be submitted here as comments or can be sent to Mecfsaction@yahoo.com. We hope you will provide input.

What do you think of the letter?

How do these priorities mesh with yours?

Is something missing?

Joint Request from the ME/CFS Community for Action Date: June 5, 2012

To: Secretary Sebelius, Assistant Secretary Koh, Deputy Assistant Secretary Lee, and the Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Dear Secretary Sebelius, Dr. Koh, Dr. Lee, and CFSAC

We strongly believe there is an urgent need for the Department of Health and Human Services to undertake a strategic, coordinated, and fully-funded effort to address the critical priorities for adequate ME/CFS research, treatment and provider education. Therefore, we respectfully request a meeting to discuss the concerns raised in this letter and to begin formulating a comprehensive plan to address those concerns. We request your response by August 1, 2012.

For more than 25 years, DHHS has known about the devastating impact of chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS), a disease that the CDC has said “can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease… and similar chronic conditions.”(1) ME/CFS has obliterated the lives of more than one million Americans. Patients can be sick for decades, often homebound and bedridden and more likely to die prematurely from cancer, heart failure or suicide than those without ME/CFS. (2)

Former CFSAC member Dr. Nancy Klimas stated: “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.” (3)

Compounding the personal devastation is the effect on our country’s economic well-being. ME/CFS drains our workforce and costs our country an estimated $18 – $23 billion annually. (4)

In spite of all this, virtually nothing has been done, compared to other similar diseases.

The problems are clear: confusion resulting from the definition and name, paltry and misapplied NIH funding, inadequate CDC physician education and an FDA pipeline that has failed to deliver any treatments to address such a serious and life-robbing disease.

We acknowledge some progress has been made. But it has been far too little and far too slow for many patients who have suffered for decades. To make the progress needed, we require a significant, sustained and coordinated commitment from DHHS to address the following four key priorities:

  1. Resolve the definition, name and classification confusion (5) (6) (7) (8) (9)
  1. Provide a fair share of research funding, focused on biological pathologies, biomarkers and treatment (10) (11) (12) (13, 14)
  1. Educate the medical community (15)
  1. Accelerate the FDA pipeline for ME/CFS (16)

See Appendix 1 for specific details on the issues associated with these priorities.

While there are other priorities, these four are the most critical priorities today. And they have been for the last 25 years.

Many of us have literally lost decades of our lives from this lack of progress. As patients, family and friends of people with ME/CFS, we cannot allow our lives to be destroyed any longer. As a country, we can ill-afford the economic costs.

It is time for the United States government to embrace this disease with the seriousness and vigor that characterized the fight against HIV/AIDS. The Department of Health and Human Services is the one organization positioned to provide the leadership needed to undertake a strategic, coordinated and fully-funded response to the challenge of ME/CFS. We ask you to schedule a meeting between a group of ME/CFS patient representatives and key representatives from across DHHS to discuss the concerns raised in this letter and begin to formulate a comprehensive plan.

Please respond to Mary Dimmock by August 1, 2012 regarding the scheduling of this meeting or if you need additional information.

Signed

ME/CFS Patient Organizations

CFS Solutions of West Michigan New Jersey CFS Association, Inc.
CFS Knowledge Center, Inc. PANDORA
CFS/Fibromyalgia Organization of Georgia, Inc. Phoenix Rising
Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago Rocky Mountain CFS/ME and FM Association
Coalition 4 ME/CFS Speak Up About ME
The Connecticut CFIDS & FM Association, Inc. Vermont CFIDS Association, Inc.
Massachusetts CFIDS Association, Inc. Wisconsin ME/CFS Association, Inc.

ME/CFS Patient Advocates

Lori Chapo-Kroger, R.N. Mike Munoz
Lily Chu, M.D., MSHS Donna Pearson
Laurie DeDecker, R.N. Mary Schweitzer, Ph.D.
Mary Dimmock Meghan Shannon MS MFT
Pat Fero, MEPD Rivka Solomon
Suzan Jackson Jennifer Spotila, J.D.
Cort Johnson Nancy Visocki
Patricia LaRosa, R.N., MSN Toby Vokal
Denise Lopez-Majano Charlotte von Salis, J.D.
Robert Miller
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