NIH Director: long haulers “decided to take matters into their own hands”

NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results. #MEAction reported on the survey results in May and has partnered with Body Politic in several efforts, including the creation of an ME/CFS seminar for long haulers.

In his blog Dr. Collins writes, “What’s unique about the survey is that it has been issued by a group of individuals who are struggling with the syndrome themselves. These citizen scientists… [who] decided to take matters into their own hands. They already had a pretty good grip on what sort of questions to ask, as well as online access to hundreds of long-haulers to whom they could pose the questions.”

We applaud the work of Body Politic and their citizen scientists’ group, known as the Patient-led Research for COVID-19 (which includes #MEAction board member JD Davids). By quickly organizing the long-hauler community they were able to contribute to emerging knowledge around long COVID. Dr. Collins acknowledges that these individuals were able to make a unique contribution because they had the disease themselves, and that they “brought a lot of talent and creativity to the table.”

It is great to see Dr. Collins highlight patient-centered (and led) research with the level of respect and acknowledgement it deserves. This is something NIH should embrace across the board in its engagement with ME/CFS and long hauler communities, not just with words, but with action and real collaboration. #MEAction has brought together people with ME to lay out a framework for effective engagement with patients as partners in NIH research, compile community responses to NIH Requests For Information (2016, 2019), and clearly articulated the critical gaps in NIH’s stated plan for ME/CFS research and proposed concrete solutions. The point of the many hours patients have dedicated to engaging NIH research efforts is because we all want to strengthen the science, accelerate research activities, and deliver meaningful and timely outcomes for the people living with the disease.

In crediting the long haulers’ achievements, Dr. Collins noted that they had “decided to take matters into their own hands.” Patient activists and citizen scientists have learned again and again that this is necessary. In 1983 AIDS activists created the Denver Principles which outlined a new standard for self-empowerment and appropriate engagement of people with AIDS.  Their recommendations included that people with AIDS, “Be involved at every level of decision-making… Be included in all forums with equal credibility as other participants, to share their own experiences and knowledge.”  This is the standard that #MEAction will continue to fight for long haulers and all people living with ME/CFS. We reject tokenized participation in the research we depend on: nothing about us, without us.

Dr. Collins, thank you for using your platform to highlight this excellent instance of long hauler- driven research. Now let’s get to work collaborating together across all levels of long COVID and ME/CFS research activities to strengthen the science and accelerate the delivery of meaningful outcomes, including effective treatments for people with ME/CFS and other COVID-19 sequelae. We’ve been waiting for years, and with the high likelihood that COVID-19 is going to increase the numbers of those with ME/CFS, there is a lot of work to do.

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