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Lobbyists seek new funds for chronic fatigue syndrome research

Patient advocates and scientists joined forces today in a new campaign to boost research funding for the mysterious and debilitating disease chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). The group aims to increase research funds available for ME/CFS from the $5.4 million annually available today. It also wants to transfer responsibility for the disease from an isolated office within the U.S. Department of Health and Human Services (HHS) to the National Institute for Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH).

The coalition hopes to engineer the changes by inserting language into an authorizing bill expected to be introduced in the U.S. Senate; it would be a companion to the 21st Century Cures bill that has already passed the U.S. House of Representatives. That bill aims to speed the development of new medical treatments by streamlining regulations and boosting funding for NIH.

 “We really need NIH to fund research in this area—there are a lot of critically ill patients,” says Ronald Davis, a biochemist and geneticist at Stanford University in Palo Alto, California, and one of the signatories in an open letter to U.S. senators affirming the need for more ME/CFS funding. Estimated to affect between 836,000 and 2.5 million people in the United States, ME/CFS in its severe forms can make it impossible for people leave the house or get out of bed, he says. The groups seeks funding comparable to illnesses with similar patient numbers and cost to society. As examples, they cite multiple sclerosis, which was designated $103 million in fiscal year 2015, and HIV/AIDS, which received $3 billion in fiscal year 2015 research funding.

According to the lobby group, #MEAction, NIH has long justified its relatively low funding for ME/CFS research by citing a paucity of interest among scientists in the disease, and too few high-quality grant proposals. (NIH had not provided reaction as this item went to press.) Davis, however, says he’s among many scientists hampered by an inability to get funding for ME/CFS research, and has had multiple proposals rejected. (Davis has a child who suffers from ME/CFS.)

Although a recent  Institute of Medicine (IOM) review of more than 9000 studies established that ME/CFS is a legitimate disease that costs the United States billions, he says, Davis suspects that lingering skepticism over whether ME/CFS is a “real” disease may play a role in NIH’s reluctance. The “real problem” is that patients don’t look sick, he says. But extensive testing of metabolites and gene expression show significant abnormalities in the ME/CFS patient population that need to be studied in greater depth, he says.  IOM also proposed a new name for ME/CFS: “systemic exertion intolerance disease,” or SEID.

Given ME/CFS’s prevalence, research into treatments should be “proportional to and commensurate with other diseases with similar patient populations,” the letter states. Funding should be handled by NINDS along with other diseases, rather than by the isolated Office of Research on Women’s Health within HHS, #MEAction says. At present, the disease is “kind of homeless,” says Jennifer Brea, a patient advocate.

The future of the 21st Century Cures legislation is unclear. Although the effort has drawn bipartisan support in both the House and Senate, Congress’s election year schedule is tight, and lawmakers may not be able to agree on a final version this year. The White House has expressed general support for the House bill, but also raised questions about a number of details.

*Correction: 17 August, 8:51 p.m.: This item has been updated to reflect the fact that #MEAction is not asking for an increase in research funding to $250 million. Instead, it is asking for funding comparable to illnesses with similar patient numbers and cost to society. ScienceInsider regrets the error.