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Policy

Funding Fight Against Myalgic Encephalomyelitis

November 2, 2015 | A version of this story appeared in Volume 93, Issue 43

The National Institutes of Health has had major successes funding R&D on major diseases (C&EN, Aug. 3, page 31), as long as they fit “inside the box,” meaning NIH’s existing institutes for cancer, allergy, etc. However, NIH plus the Centers for Disease Control & Prevention (CDC) plus the Department of Health & Human Services equals an abysmal failure that discriminates against millions of Americans grossly afflicted by even major diseases that do not fit into their predefined boxes. Interdisciplinary funding is needed going forward.

An example is myalgic encephalomyelitis (ME), a debilitating neuroimmune disease afflicting 1 million to 2 million Americans and 20 million worldwide, with 25% housebound or bedbound, including people I know. A Senate-proposed CDC budget draft irresponsibly slashes all funding for ME. NIH funds a minuscule $5 million per year for research versus $2.5 billion per year for AIDS, which has a similar incidence.

The quality of life is much worse for ME than AIDS and most other chronic diseases. It is gross discrimination by NIH and Congress that $2,500 is spent per AIDS patient for R&D versus $5.00 per ME patient, and that cannot be tolerated for another 30 years. Developing new biomarkers/diagnostics also represents a great opportunity for many chemists, biochemists, and companies to better define this disease, which is biochemically complex.

I hope diagnostic companies can pursue this, even if NIH remains lethargic responding to this disease, ignoring recommendations for major funding by the Institute of Medicine (see the Feb. 10 report “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness”); the Chronic Fatigue Syndrome Advisory Committee, which met in August in Washington, D.C.; and other government organizations. A superb team, including Nobel Prize winners and top scientists, has formed to attack ME (see end-mecfs.org), but funding is still rejected.

ACS should cover this disease because there is a huge promise for cures, especially with NIH or philanthropic funding. One in 400 or so have ME, so approximately 400 ACS members or past members likely have this and need your help. Finding biomarkers then curing this disease will save our economy $20 billion per year, so funding R&D has a high chance of a high return on investment.

Mark Camenzind
San Ramon, Calif.

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