ME/CFS -Petition Department of Health and Human Services

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Sign the petition: http://chn.ge/NtYMTU

Department of Health and Human

Services: Formulate a Strategic,

Coordinated and Fully-Funded

Response to ME/CFS

Over the past 25 years, myalgic

encephalomyelitis/chronic fatigue syndrome

(ME/CFS) has devastated the lives of more than

one million Americans. But to date, very little has

been done to help these patients.

We are asking Secretary Sebelius to convene

a meeting between ME/CFS patient represen-

tatives and key representatives from across

DHHS to better understand our concerns and

then work with us to formulate a strategic,

coordinated and fully-funded response to the

challenge of ME/CFS.

We need your help. We will be more likely to get

the attention of Secretary Sebelius and the

Department of Health and Human Services if a

significant number of people sign this petition.

Please do so and ask your family and friends to do

so as well. The petition is open to anyone. For

those outside of the U.S., you will be able to list

your country.

Sign the petition: http://chn.ge/NtYMTU

Additional information

ME/CFS is a complex disease characterized by

neurological, immunological and

endocrine/autonomic dysfunction. Patients

experience profound fatigue, intense exhaustion

after mild physical or mental exertion, cognitive

difficulties, heart rate variability and dizziness,

unrefreshed sleep and pain. The CDC has said that

ME/CFS “can be as disabling as multiple

sclerosis, lupus, rheumatoid arthritis, heart

disease, end-stage renal disease… and similar

chronic conditions.”

Patients can be sick for decades, often homebound

and bedridden or unable to work. Patients are more

likely to die prematurely from cancer, cardio-

vascular disease or suicide. Ten percent of ME/CFS

patients are children, some as young as five years

old.

Compounding the personal devastation is the

financial impact on our economy. ME/CFS drains

our workforce and costs our country an estimated

$18 - $23 billion annually in medical costs and lost

productivity.

In spite of all this, very little has been done by the

United States government for over 25 years. There

is very little NIH funding for research. The disease

definition is inadequate, resulting in misdiagnosis.

Medical education is inadequate, leaving doctors

unprepared to care for these patients. There are no

FDA approved drugs. Some patients are

stigmatized by doctors and family who think the

illness is all in their heads.

Many of us have lost decades of our lives from this

lack of progress. We cannot allow our lives and the

lives of our families to be destroyed any longer. Our

country can ill-afford the economic costs.

It is time for the United States government to

embrace this disease with the seriousness, vigor

and urgency that characterized the fight against

HIV/AIDS.

On June 5, 2012, a group of 14 ME/CFS patient

organizations and 19 patient advocates (listed

below) submitted a letter to the Department of

Health and Human Services asking Secretary

Sebelius to convene a meeting between ME/CFS

patient representatives and key representatives

from across DHHS to understand our concerns and

begin to formulate a comprehensive plan to

address the challenge of ME/CFS. The letter was

sent to Secretary of Health and Human Services

Kathleen Sebelius, Assistant Secretary for Health

Koh, M.D., Deputy Assistant Secretary for

Women’s Health Lee, M.D. and the Chronic

Fatigue Syndrome Advisory Committee (CFSAC).

Please join us in calling on Secretary Sebelius to

convene that meeting and finally begin to help

patients devastated for far too long by this terrible

disease.

A link to the full letter that was sent to DHHS is

available here: http://bit.ly/NtZOzl

Sign the petition: http://chn.ge/NtYMTU

The letter was signed by the following ME/CFS

organizations and independent advocates:

ME/CFS Patient Organizations

CFS Solutions of West Michigan, CFS Knowledge

Center, Inc., CFS/Fibromyalgia Organization of

Georgia, Inc., Chronic Fatigue Syndrome,

Fibromyalgia and Chemical Sensitivity Coalition of

Chicago, Coalition 4 ME/CFS, The Connecticut

CFIDS & FM Association, Inc., Massachusetts

CFIDS Association, Inc., New Jersey CFS

Association, Inc., PANDORA, Phoenix Rising,

Rocky Mountain CFS/ME and FM Association,

Speak Up About ME, Vermont CFIDS Association,

Inc., Wisconsin ME/CFS Association, Inc.

ME/CFS Patient Advocates

Lori Chapo-Kroger, R.N., Lily Chu, M.D., MSHS,

Laurie DeDecker, R.N., Dimmock, Pat Fero,

MEPD, Suzan , Cort ,

La, R.N., MSN, -Majano,

, Mike Munoz, Donna Pearson,

Schweitzer, Ph.D., Meghan MS MFT,

Rivka , Spotila, J.D.,

Visocki, Toby Vokal, Charlotte von Salis, J.D.

SIgners added after June 6, 2012

ME/CFS Patient Organizations

ProHealth, XMRV Global Action, Portland

Fibromyalgia-ME/CFS

ME/CFS Patient Advocates

Rich Carson, Celeste , R.N., Jill Justiss,

Kati Debelic, R.N., Matina Nicolson, Joan

Grobstein, M.D., Leela Play

Note that individual emails will be collected and

delivered to Secretary Sebelius at the end of the

petition drive.