Chronic Fatigue Syndrome: Wrong Name, Real Illness

Miriam E. Tucker


January 08, 2015

In This Article

Federal Efforts, Funding, and Future Directions

The US federal government is currently addressing ME/CFS on several fronts. A two-day "Pathways to Prevention" (P2P) workshop aimed at identifying research gaps in the field was held at the National Institutes of Health (NIH) on December 9 and 10, 2014. A draft report from that meeting was posted online on December 18 for a 30-day comment period.

The FDA has been sponsoring a series of activities addressing drug development for ME/CFS, and the CDC is currently conducting a clinical assessment to better characterize patients with ME/CFS in seven US speciality practices.

Despite these federal initiatives, research funding from NIH for ME/CFS hovers at just $5 million. This contrasts with the $115 million for multiple sclerosis, which affects approximately 400,000 people in the United States, and over $3000 million for HIV/AIDS, with roughly the same number of affected people, 1 million, as ME/CFS.

Much of the ME/CFS research conducted in recent years has been funded from private sources such as Solve ME/CFS, the Hutchins Family Foundation, and the Edward P. Evans Foundation.

At the P2P meeting, speakers pleaded with NIH to increase the ME/CFS research funding level.

Dr Kogelnik, whose work at the Open Medicine Institute focuses on "Big Data" approaches to unravelling several complex diseases, including ME/CFS, expressed frustration at the lack of funding for applying state-of-the-art genomic, proteomic, and gene expression analyses to larger numbers of ME/CFS patient samples. "We have a lot of interesting pilot data. The challenge for us has been, frankly, a funding issue...We're raising private monies to do these studies...That is not quite right given the nature of data that exist today. NIH really needs to step up with the funding."

Dr Davis told Medscape Medical News, "NIH funds researchers...There are very few [ME/CFS] researchers, so NIH's budget is proportional to that. Of course, the number of researchers is proportional to the NIH funding. So it's a catch-22."

Dr Davis is just beginning to seek funding for the research consortium he envisions. "You have to do something different...When we started the Human Genome Project, they couldn't just fund it proportional to the genome sequencing community, which is very small, so they set up a [new] whole program," he told Medscape Medical News.

Dr Davis is among several investigators who hope to begin studies that will entail making home visits to conduct sophisticated testing on the most severely affected bedridden ME/CFS patients, such as his son. Nearly all of the data that have been collected so far have come from patients who were at least well enough to go to a laboratory and perform on a treadmill or undergo other testing.

"The signals that are in those [severely affected] patients for what's wrong are probably much more pronounced...It's true of many diseases—that if you really want to see what's going on, the severe cases give much more information," Dr Davis noted.

Dr Kogelnik told Medscape Medical News, "In medicine, we tend to like the one-answer solutions. We're great at diagnosing things that have one problem, like a clogged artery. What we're really bad at are complex diseases that have a systemic issue going wrong. With ME/CFS it's the whole system that's broken down, so there may not be one pill to cure everybody. It's more a matter of figuring out the imbalance in the system. We're not good at thinking that way in medicine. I think that's something that we need to change, particularly around this disease."

Dr Komaroff, Dr Kogelnik, Dr Davis, and Dr Montoya have disclosed no relevant financial relationships. Dr Dimitrakoff's team's work was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Institute of Allergy and Infectious Diseases.


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