To: Francis Collins, Director of the National Institutes of Health

Fund ME Research Fairly and Equally

Fund ME Research Fairly and Equally

I am writing to demand that, under your leadership, the National Institutes of Health (NIH) increase funding for Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome (CFS) to the level of illnesses with a similar disease-burden.

ME/CFS affects up to 2.5 million people in the United States, over 80% of them women. The disease causes profound neurological, immunological and metabolic dysfunction - resulting in a level of debility that is on average equivalent to congestive heart failure or multiple sclerosis. Many ME/CFS patients end up homebound or bedbound, robbed of the lives they previously knew. Yet, it only receives approximately $15 million a year from the NIH.

That is why I am calling on you to end this huge disparity and increase research funding for ME/CFS to $250 million per year. We cannot discover effective treatments on a timetable to prevent needless disability and loss of life without an immediate, significant investment at this level. With this funding, we can work together to bring an end to this shamefully neglected, under-resourced and misunderstood tragedy.

I will not continue to passively accept the egregious lack of investment in ME/CFS. The care of our citizens is a human rights issue that should not and cannot be ignored. Please let me know what the NIH plans to do to allocate resources to advance ME/CFS research and save lives.

Why is this important?

ME/CFS affects up to 2.5 million people in the United States, over 80% of them women. The disease causes profound neurological, immunological and metabolic dysfunction - resulting in a level of debility that is on average equivalent to congestive heart failure or multiple sclerosis. Many ME/CFS patients end up homebound or bedbound, robbed of the lives they previously knew.


Reasons for signing

  • after seven years,I have not found a doctor to take me and my illness seriously because the research either isn’t there or hasn’t trickled down to clinical practice. There is no biomarker or test to be run confirming my illness and most doctors in the us have no idea how to diagnose it. We need help. We need to be heard. Me/CFS has sent my family into deep poverty and I am unable to “prove” my infirmity to social security disability.
  • 17 years ago I was abducted from my healthy, vibrant life. I cannot work, and am grateful to be able to now take care of myself without outside help--which is great because after all these years, finances have dwindled, husband has left & friends don't understand. I am thankful for the research and new advances--it must come faster though--my life and many others are waiting to resume and return to being productive people again.
  • As an ME/CFS sufferer, am blessed to have a fabulous doctor working in my behalf, however so many of the prescriptions are off label and cost prohibitive due to lack of research studies. I am home bound, like so many other ME/CFS sufferers - so my voice is “small” compared to those w other diseases.

Updates

2017-10-09 13:31:29 -0400

1,000 signatures reached

2017-09-26 10:36:00 -0400

500 signatures reached

2017-09-22 15:24:54 -0400

100 signatures reached

2017-09-21 21:00:12 -0400

50 signatures reached

2017-09-21 15:39:24 -0400

25 signatures reached

2017-09-21 12:17:27 -0400

10 signatures reached