NIH Comes up Short Once Again

No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers

The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC) program, first launched in 2017, beyond its initial 5-year lifetime. They have issued a $7.1M annual funding opportunity for the ME/CFS CRCs, and another $500K annual funding opportunity for a supporting Data Management and Coordinating Center (DMCC). These awards will also run for a 5-year term. Previous research center awardees will need to reapply along with any new applicants to compete for this next round of CRC funding. 

While it is good news that funding for ME/CFS research centers will continue, unfortunately, the bad news is that NIH is not increasing the amount of funding available to CRCs beyond the previous award levels set in 2017. The plateaued funding levels also means the total number of research centers studying ME/CFS is unlikely to increase. Moreover, it appears there will be at least a 7-month funding gap between when the prior awards end (August 2022) and the earliest the new awards will begin (April 2023). That could mean currently funded research centers will have to find alternative ways to cover continued research and staff expenses during this funding gap.

The CRCs themselves have previously stated they do not have the necessary funds to carry out their mission. Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS) and Chair of the Trans-NIH ME/CFS Working Group, has also repeatedly said that ME/CFS research needs to be accelerated and has even acknowledged that we need as many as 20 research centers and 10 to 20 times as much funding. ME/CFS researchers have expressed strong interest in forming additional NIH-funded ME/CFS clinical research centers. In 2017, there were 10 applications to NIH for CRC funding, but only 3 were awarded due to limited funding (plus the DMCC). The reason there are so few ME/CFS research centers today is because NIH has refused to increase funding for this program beyond all but a handful of awardees.

#MEAction has repeatedly called on NIH to increase funding for CRCs in 2018, 2019, 2020, and 2021; but NIH continues to ignore our calls for action. Augmenting the existing funding stream for the CRCs is the simplest and most expedient mechanism to inject needed investment into the ME/CFS research program. Yet, NIH is unwilling to take this easiest possible action to accelerate ME/CFS research. 

The Reality of NIH Funding for ME/CFS Research

In fiscal year 2021, NIH received yet another funding increase from Congress. It was the sixth year in a row the agency has received a boost of over $1 billion. Yet, while overall funding for NIH has increased year over year, actual funding for ME/CFS research has flatlined since its peak in 2017.

As cases of Long COVID continue to mount, a sizable fraction of these people have symptoms consistent with ME/CFS, and many will go on to acquire an ME/CFS diagnosis. The sad truth is: if NIH had been more committed to funding research on ME/CFS and other complex, chronic post-infectious illnesses prior to the COVID pandemic, we would be better informed in dealing with Long COVID now.

In the past year, #MEAction has urged NIH to better integrate ME/CFS expertise and comparison cohorts into its Long COVID research, to expedite clinical treatment trials of repurposed ME/CFS drugs in patients with Long COVID, and to accurately identify and consistently track ME/CFS cases among people with Long COVID. But, at the same time, NIH also needs to be making deep and direct investments in ME/CFS research right now, not just perpetuating its stalled status quo funding. 

People with ME deserve better than this, and we need so much more. We need NIH to issue multiple, multi-year ME/CFS-specific funding announcements, with set-aside funding for research into critical issues such as investigating underlying pathophysiological mechanisms and establishing biomarkers in more homogeneous subgroups. We need multiple clinical treatment trials for ME/CFS. We need regional “Centers of Excellence” for integrated research and treatment of ME/CFS across the country. Yet, time and again, NIH has said no to all these proposals. 

Now, NIH has again said no to increasing funding for the only dedicated ME/CFS grant mechanism they do have – the Collaborative Research Centers. It begs the question, when will NIH ever make the serious investment needed to accelerate help for our community?


7 thoughts on “NIH Comes up Short Once Again”

  1. The NIH is run by a corrupt, self centered, ignorant bunch of people. These people need to be fired. I’ve been suffering with this disease for 35 years now and I don’t see any hope.

  2. This is meaningful worse than “flatlining” the funding as our highest inflation in 40 years means the renewed funding is approximately 20% less value than 5 years ago. With this heightened inflation continuing, it is quite likely it will translate to almost 50% less value over the next five years compared to its value five years ago. There are virtually no words, at least that are appropriate for a public space, to describe how indespicable the NIH’s continued failure to address ME.

  3. This dynamic will never ever change unless drastic, unconventional, guerilla-style tactics are undertaken by MEAction and other advocacy leaders. As I’ve been saying for years, we need to find a “celebrity” voice, and then embark on a press tour which literally shames the NIH into action, and, specifically, in their own backyard (aka Washington Post). We have so much more wind in our sails now with being included in high-profile articles, being integrated into the national conversation, and having science writers, cognoscenti and other media influencers on our side.

  4. As Cort said in his latest blog – it’s become crystal clear now that the NIH cannot be trusted to help ME/CFS patients. If a global pandemic causing 10s of millions to get an ME/CFS-like illness doesn’t make them change their ways re ME/CFS (they completely ignored ME/CFS again) then nothing will.

    It’s time to forget NIH completely and focus all advocacy efforts on Congress – on getting them to force NIH to take ME/CFS seriously.

  5. I’m all for guerilla tactics, making noise, naming names and embarrassing them. An ACT Up model for ME. Even if, as Cort says, the NIH will probably remain oblivious, others will hear. That paradox of ME—people like me are so affected by ME that we ( I ) CANNOT act. But where are the celebrities, rich folks, healthy parents, and others (including broke and dispossessed, thanks to ME, like me) people who could do this???? Not a rhetorical question!

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