Dear Dr. Francis Collins,  

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.



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