ME/CFS Orgs Push Secretary of Health Sibelius For Strategy Meeting

Posted by Cort Johnson

Federal government ignoresFor more than 25 years, the Department of Health and Human Services (DHHS) has known how debilitating chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS) can be.  Studies have shown that ME/CFS is common, afflicting perhaps 1 million people in the U.S. and the CDC reports ME/CFS “can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease… and similar chronic conditions.”

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.

ME/CFS has devastated the lives of more than one million Americans along with the lives of their families. Patients have been left sick for decades, often homebound and bedridden with no help and little attention from the federal government.

Yet virtually nothing has been done. All the studies showing high rates of prevalence and high economic costs haven’t made a dent in the governments commitment to ME/CFS.   Twenty five years later, there is still confusion around the definition, NIH funding is lower in real terms than it was 20 years , the CDC Physician Toolkit is abysmal, and no FDA approved treatments exist.

It’s time to take a stand;  it’s time for the United States government to embrace this disease with the seriousness and vigor that characterizes it’s fight against many other chronic illnesses.

Organizations and Advocates Request High Level DHHS Meeting

advocating for me cfsOn June 6, 2012, a group of 14 ME/CFS patient organizations and 19 independent advocates submitted a joint letter to the Department of Health and Human Services requesting Secretary Sebelius to convene a meeting between the ME/CFS community and DHHS to discuss the our concerns patients and to begin formulating a strategic, coordinated and fully-funded response to the challenge of ME/CFS.

The letter was sent to Secretary Kathleen Sebelius, Assistant Secretary Howard Koh, M.D., Deputy Assistant Secretary Nancy Lee, M.D. and the CFSAC. The full letter can be read here.

The letter constituted the largest joint advocacy effort that we can know of.  Phoenix Rising  signed the letter because we strongly believe that only by working together will we win the battle to end government neglect and give us the opportunity to get our lives back.

FDA Stakeholders Meeting

You may be wondering how this letter fits in with the  successful letter writing campaign to request the FDA to convene a stakeholder meeting.  Accelerating the delivery of drugs through the FDA is one of the 4 priorities outlines in the DHHS letter we’ve sent to federal officials and all of those involved in the FDA action signed the DHHS letter.

The First Step – Sending this letter to Secretary Sebelius requesting a strategic, coordinated and fully funded response to ME/CFS is just the first step. We must now prepare more fully for the requested meeting and also define other efforts to advance our cause. If you have any suggestions please let us know at

The Petition

Please take a minute to sign the petition calling on Secretary Sebelius to convene the meeting and formulate a strategic response to ME/CFS and please ask your family and friends to sign the petition on your behalf. This is important. The more people who sign the petition, the greater our chances of success.

ME/CFS doesn’t have to be a neglected disorder; other disorders have risen from neglect to prominence and we will too. Together, we can make this happen and change our futures!!


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