The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to work and 25-29 percent housebound or bed-bound; and the disease takes an annual $17 to $24 billion toll on the economy.
And yet, the NIH clearly needs a political incentive to address the crisis of ME/CFS with real commitment. On May 12th, we plan to give the NIH that incentive by mobilizing thousands of people in every state across the country to show up for #MillionsMissing – whether from their homes because they are not well enough to leave, or on the streets – to show the NIH director, Dr. Francis S. Collins, that this disease deserves urgent attention.
Their Track Record is Abysmal
For decades, the NIH has neglected people with ME/CFS, regulating the disease to the bottom of its funding priorities. The failure of the NIH to address this disease is unconscionable given the number of people affected, and the immense burden it has on our lives and on our families.
For the past 20 years, NIH funding has averaged about $5 million annually for ME/CFS. In 2017, the budget for ME/CFS finally increased to $13 million annually after the NIH announced research funding for three Collaborative Research Centers and a data center.
Based on a report detailing the disease burden of ME/CFS – meaning the number of people affected and the effect of the disease on their lives – the annual research budget for ME/CFS should be a minimum of $200 million per year. This is a reasonable request in the context of funding for other diseases. For example, funding for multiple sclerosis was an estimated $100 million last year whereas ME/CFS is two to three times as more prevalent than MS, and has a lower quality-of-life.
ME/CFS patients score more poorly on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers.
The NIH is Well-Aware
The dire nature of the disease is not lost on the directors at the NIH who have publicly acknowledged the necessity of focusing attention on ME/CFS. In a Jan. 2018 interview, Collins, singled out ME/CFS as one of the priorities at the NIH that is “desperate for treatments.”
The director of the National Institute of Neurological Disorders and Stroke, Walter J. Koroshetz, M.D., said that “ME/CFS is fifty years behind,” in an interview on the White House Chronicle last fall. He made a similar comment last June, saying that ME/CFS “has been completely under-investigated,” during an NIH advisory committee hearing (see video at 2 hrs 25 mins).
It’s in their Power
The NIH has the money to fund research. In the last two years, overall NIH funding increased by $5 billion, including $3 billion in this March’s omnibus bill. The NIH also has the ability to jumpstart research for diseases that are deemed a public health crisis. For example, the NIH just announced a $1.1 billion investment into funding for opioid misuse / addiction research – a doubling of the budget with the support of Congress.
We need a results-oriented plan
In order to make tangible steps forward in improving the lives of people with ME/CFS, the NIH must focus on the end-goals that will provide relief for patients. Without a commercially-available diagnostic biomarker for ME/CFS, doctors continue to misdiagnose and mistreat patients. We are calling on the NIH to work towards a comprehensive, aggressive plan that delivers:
- A validated diagnostic biomarker which can be used within the research and clinical communities within 3 years.
- The start of NIH-funded clinical drug trials of one or more drugs as treatments within 1 ½ years.
- FDA approval of at least one drug for specific usage in ME/CFS within 3 to 5 years.
In order to achieve these goals, we are calling on the NIH to accomplish a list of initiatives over the next twelve months that will move us towards these goals. More about those initiatives to-come.
Seize the Day
On May 12th, we will speak out with a unified voice to demand justice. More than 200 visibility actions will take place across the globe – check out the map at millionsmissing.org. Now, is the time to join the rallying call to force our governments to address this health crisis.