REPORT SUMMARY: WHAT NIH IS (AND ISN’T) DOING FOR ME/CFS & LONG COVID RESEARCH

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As more and more COVID-19 survivors report disabling, multi-system symptoms lasting months on end, the National Institutes of Health (NIH) is finally beginning to openly acknowledge the serious health risks ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) poses to the public. In the past couple of weeks, Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH, has highlighted this issue in multiple interviews, explaining that some COVID-19 “long hauler” patients “have a post-viral syndrome that’s very strikingly similar to ME/CFS.” 

The NIH is taking some important actions to fund and conduct research on the long-term health effects of COVID-19, sometimes referred to as “long COVID” which include but are not limited to symptoms characteristic of ME/CFS. Observational “cohort” studies tracking groups of COVID patients for one to three years are being developed both intramurally and extramurally. These actions are seizing on opportunities to understand post-viral chronic illnesses like never before. 

But while these efforts offer some hope, when we look below the surface we find a disturbingly familiar story: NIH leadership does not have a coordinated, outcomes-focused strategy for developing diagnostics and treatments for the many who will likely develop multi-system illnesses from COVID-19. While NIH Director Francis Collins is personally ensuring a coordinated, fast-tracked research strategy for the development of diagnostics, vaccines and treatments for acute COVID, research on long COVID is developing in a piecemeal, undirected fashion. Without a strategic, large-scale, treatment-focused research effort on par with the one being executed for acute COVID-19, a large number of those developing long COVID will remain ill indefinitely.

We in the ME/CFS community know what it is like to remain sick, untreated and dismissed for decades. We know that if NIH leadership had systematically funded and pursued ME/CFS research into diagnostics and treatments over the past few decades, or even the past few years, we would likely not be witnessing the current long COVID crisis on such a devastating scale. As Ed Yong, science writer with The Atlantic, said in a recent powerful NPR interview, not knowing how to diagnose or treat long COVID patients presenting with symptoms very similar to ME/CFS is “a wholly preventable tragedy that could have been avoided had people with similar problems not been … gaslit and disbelieved for many decades.”

We also know that ME/CFS researchers have produced the most advanced knowledge on multi-system post-viral illness to date. As David Tuller and Steven Lubet wrote in their recent article for STAT, “ME/CFS could hold keys to understanding the long-term health consequences of COVID-19.” Still, little is being done by the NIH to fund or conduct ME/CFS research into diagnostic biomarkers and treatments, or to advance it on an urgent timeline. Doing so could lead to critical interventions for those with some kinds of long COVID, and yet the NIH, as usual, is refusing to do what is needed. 

NIH leadership—and specifically Dr. Francis Collins—has the resources and responsibility to create the change we need. But the under-funded, piecemeal approach of the NIH’s efforts to understand both ME/CFS and the long-term consequences of COVID-19 threatens to leave patients behind yet again. Their medical providers will tell them there are no treatments for their illness. And unlike with acute COVID-19, there is no promise of a therapy coming. NIH leadership will have failed yet another generation of people with ME/CFS and other multi-system, post-viral illnesses. And it will be because Dr. Francis Collins chose not to do anything about it again.

WHAT #MEACTION HAS BEEN DOING

From the beginning #MEAction has been clear in our demand that the NIH and other US federal agencies must do more to address the ME/CFS crisis and make up for decades of research neglect and mishandling. We protested the NIHWe met with Dr. Collins. Last year we participated in a NIH working group to recommend changes and solicited suggestions from the community. When the NIH working group didn’t go far enough to recommend the necessary changes we called them out for not doing enough for MEAgain. And again. And again.

This year we had to put plans for our largest protest yet in Washington D.C. on hold when the coronavirus pandemic swept the United States. We fully expected this development would cause a surge in post-COVID chronic illness, including ME/CFS and sprang into action by joining COVID-19 coalitions, connecting with COVID-19 Long Hauler groups, and planning educational programs on the topic.

For the past several months, #MEAction staff and volunteers have gathered more information about what changes the NIH has—or hasn’t—made to its research efforts in light of COVID-19. We’ve worked hard to organize this information, and make it available to the community so that it might inform both our insider advocacy and our outsider activism going forward. 

We thank the NIH program staff for the time and effort it took to answer our many questions, and we strive to be accurate and fair in our assessment. 

We have organized the information we’ve gathered into two parts:

Part 1 is a review of the state of ME/CFS research at the NIH in the era of COVID-19. 
Part 2 explores the new NIH research initiatives to study the long-term consequences of COVID-19 (i.e. long COVID).Part 1: ME/CFS ResearchPart 2: Long COVID Research

WHAT COMES NEXT

We recognize that there is a lot of information to digest, but the most important thing for all of us to remember is that you are not alone. We are in this fight for health equity together, and it is by mobilizing together that we can create the power necessary for real change. We invite you to join us for a community meeting on Wednesday, August 5th to discuss what the NIH is and isn’t doing, and what we as a community want to see changed.

The following week, on Tuesday, August 11, the NIH will host the first meeting of the Interagency ME/CFS Working Group. #MEAction will participate in this meeting which will be livestreamed to the public. But the conversation doesn’t end here.

As we’ve said repeatedly, what matters is whether federal agencies like the NIH are delivering the urgently needed diagnostic biomarkers and treatments for people living with ME/CFS and long COVID. So we will meet again on Wednesday, August 19, to debrief as a community about what we learn from the Interagency ME/CFS Working Group meeting, and how we are going to hold our federal agencies responsible.

Join us for these upcoming events:

RSVP MEAction Community MeetingWatch NIH MeetingRSVP MEAction Community Debrief

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