Government funding for research centers and a data management center for ME/CFS has been made public, and the amount of funding allocated is infuriatingly small.
The National Institute of Health (NIH) plans to issue two Requests for Application (RFAs) in January to fund 2-3 collaborative research centers and a data management center for ME/CFS. The RFAs will provide a total of $30 million over the next 5 years, or approximately $6 million per year. It is not yet clear how the funding will be allocated between the research centers but, if spread evenly, the funding amounts to approximately $2 million per year per center – about the size of many NIH individual investigator awards.
The earliest that funding would begin is in September 2017.
Dr. Vicky Whittemore announced the funding for the RFAs at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting last week. Whittemore is a program director for the National Institute of Neurological Disorders and Stroke (NINDS) at the NIH, and a member of the Trans-NIH ME/CFS Working Group.
Activist Jennie Spotila welcomes the five-year commitment, but says the dollar amount is grossly inadequate because people with ME/CFS have suffered for decades while NIH refused to invest in research into the cause and treatment of the disease.
“When you are starving to death on a cup of rice a day, the addition of another cup of rice sounds like a banquet, but you are still going to starve to death.”
Scientists and activists have long called on the NIH to issue RFAs in order to attract researchers driven away by the stigma and lack of funding. RFAs come with set-aside funding. The last time NIH issued an RFA for ME/CFS was in 2005.
NIH has indicated that the total funding for ME/CFS research in 2017, including the new RFAs, will be about $15M. This level of funding is far below what would be expected based on the disease burden of people with ME/CFS, and it is far less than other disease groups receive.
In November 2015, during a call with patients and advocates, NINDS Director Walter Koroshetz said the RFA for ME/CFS research centers would be comparable in size to RFA’s establishing other research centers. A look at other similar initiatives in recent years shows malaria research centers receiving $14 million per year, autism research centers receiving $100 million over 5 years, and Fragile X research centers receiving $35 million over 5 years for a condition far less prevalent than ME/CFS.
Six million dollars per year for ME/CFS is not comparable to other recent research center initiatives.
The Open Medicine Foundation “wants to raise at least $5 million a year for research. An actual center will cost $10 million a year at least,” said foundation president Linda Tannenbaum.
Thus NIH’s proposed funds for the RFAs will not even pay for one center, let alone multiple research centers and a Data Management and Coordinating Center.
The ME community is tired of false starts. Director of NIH Francis Collins said in an interview with NPR in 2015 that funding for ME/CFS will be substantially greater than the current five or six million a year,” and that “we are going to ramp this up.” The expected $15 million in 2017 research funding is far below the NIH funding levels seen in other diseases of similar disease burden and also far below the $188 million per year that a recent paper estimated would be commensurate with ME/CFS’s burden.
Terri Wilder, a New York ME activist, is frustrated with the RFA dollar amount. “How much longer do we have to wait for our disease to be taken seriously? 30 years? 40 years? 100 years? While the RFA announcement is a step in the right direction, the dollar amount is crumbs compared to what we really need to uncover the basic science of this disease. This is exactly why the average American has a negative view of the government. We are let down at every turn.”
Meanwhile, Collins will continue as director of the NIH under the Trump administration for the time being, but it is not clear for how long, according to Science Magazine.
ME activists will continue to demand that the NIH fund research at a serious level and will fight louder and harder in 2017.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the