The U.S. Senate HELP Committee held a historic hearing about Long COVID last Thursday to discuss advancing research and improving patient care. #MEAction contacted the press to alert them to the hearing, and issued a follow-up press release sharing highlights from the hearing, and explaining the connection with ME/CFS. Our Scientific Director worked behind the scenes to advise a number of committee members on their testimonies.
There was a large show of support from Senators from both parties, with several Senators sharing their own experiences of being affected by Long COVID. The Senate heard testimony from two patients, a parent of a child with Long COVID, and three health experts. Several panelists spoke about the connection between Long COVID and ME/CFS, and the imperative that we build on the existing ME/CFS research and include infection-associated conditions, like ME/CFS, in our country’s quest to solve Long COVID.
Former President of Body Politic, Angela Vázquez, testified about her experience with Long COVID, and emphasized the need to ground Long COVID research in the expertise that already exists on infection-associated diseases like ME/CFS. Body Politic is a Long COVID grassroots organization that is now a project of #MEAction.
“Research [on Long COVID] needs to build on the existing research,” said Vázquez. “Long COVID is not a new thing. ME/CFS is not new. Dysautonomia is not new. Mast cell activation is not new. Those conditions have historically been very under-funded compared to the disability that they have contributed to over generations.”
Dr. Ziyad Al-Aly, M.D. called for the establishment of an Institute for Infection-Associated Chronic Illnesses with a budget of at least $1 billion per year within the National Institutes of Health “to address the complexity and multisystemic nature of Long Covid, ME/CFS and other IACC.” Studies show that nearly half of the Long COVID community meets the diagnostic criteria for ME/CFS.
“ME/CFS affects 4.3 million people in the U.S. (1.3% of the U.S. population),” testified Dr. Al-Aly. “These patients have been ignored and marginalized for decades. Had we connected these dots (between acute infections and chronic disease) before the COVID-19 pandemic, we would have been in a much better place to address the challenge of Long Covid.”
Chairman Bernie Sanders opened the hearing saying that “we as Congress have not done anywhere near enough and we hope to turn that around.
“When I hear of Long COVID, you have not my sympathy but my empathy,” said Ranking Member, Bill Cassidy, a Republican, in his opening statement. “My understanding that this is something that can be devastating… Let’s get the research better.”
The Long COVID community has called for a “moonshot investment” into Long COVID – at least $1 billion annually over the next ten years. Long COVID and ME/CFS advocates sent a letter at the end of last year urging President Biden to establish an NIH Office under the NIH Director with an annual budget in the billions of dollars to coordinate and fund research on Long COVID and other infection-associated chronic conditions, including ME/CFS.
Our communities are calling on Congress to act to make the appropriate investment into researching Long COVID, and to prioritize ME/CFS as part of the research focus. We will continue to fight to make this happen.
#MEAction Editor & PR Manager