Dakota15
Senior Member
- Messages
- 337
- Location
- Midwest, USA
Yale Medicine: 'When Long COVID Worsens Preexisting Chronic Conditions'
'As someone who suffers from both ME/CFS and Long COVID, Billy Hanlon—in his role as the director of advocacy and outreach at the Minnesota ME/CFS Alliance—also advocates for advancing research into these conditions'
"...I instead want to focus on actionable items that anyone reading this can do to help support future care for this rapidly growing group of people affected by these illnesses."
"First, Sen. Bernie Sanders (I-Vt.) recently announced a legislative proposal for The Long COVID Moonshot Act. This proposal is aptly titled as the advancements needed surely warrant a moonshot—the term used when Congress marshals resources across the federal government to expedite progress. These infection-associated chronic illnesses have historically been left at the end of the queue for research funding.
"You can reach out to your elected official and ask for their support on this proposal, which will help accelerate and prioritize research, diagnostics, and treatments. This proposal would provide $1 billion in mandatory funding per year for 10 years so that the National Institutes of Health (NIH) can respond to this crisis with the sense of urgency that it demands. Recently, Reps. Ilhan Omar (MN-05) and Ayanna Pressley (MA-07) have also introduced a companion bill for the Long COVID Moonshot in the House of Representatives"
"Second, an ME/CFS Research Roadmap Report was approved in May by the National Institute of Neurological Disorders and Stroke (NINDS). This is a step in the right direction toward clinical trials, but now we need the NIH to robustly fund it. You can contact your elected officials and ask that the NIH help make this a reality. These are also efforts that could pay dividends toward an ME/CFS platform clinical trial. This was recently recommended by Senior Investigator and Clinical Director Dr. Avindra Nath following the completion of the NIH ME/CFS Intramural Study. A platform trial or advancements in the Research Roadmap Report could potentially yield a lot of intel for Long COVID treatments and help inform the RECOVER Initiative, a research program by the NIH that aims to understand, diagnose, prevent, and treat Long COVID."
"Lastly, Long COVID and ME/CFS were highlighted in May at the Senate Labor, Health and Human Services, Education and Related Agencies Subcommittee FY25 NIH Hearing. During the hearing, NIH Director Dr. Monica Bertagnolli stated, “… I want to say about Long COVID and ME/CFS—we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do. Now we just need to deliver for them.” Millions of people would agree. A crucial step would be to establish a dedicated Center at the NIH focused on Long COVID, ME/CFS, and infection-associated chronic conditions and illnesses."
'As someone who suffers from both ME/CFS and Long COVID, Billy Hanlon—in his role as the director of advocacy and outreach at the Minnesota ME/CFS Alliance—also advocates for advancing research into these conditions'
"...I instead want to focus on actionable items that anyone reading this can do to help support future care for this rapidly growing group of people affected by these illnesses."
"First, Sen. Bernie Sanders (I-Vt.) recently announced a legislative proposal for The Long COVID Moonshot Act. This proposal is aptly titled as the advancements needed surely warrant a moonshot—the term used when Congress marshals resources across the federal government to expedite progress. These infection-associated chronic illnesses have historically been left at the end of the queue for research funding.
"You can reach out to your elected official and ask for their support on this proposal, which will help accelerate and prioritize research, diagnostics, and treatments. This proposal would provide $1 billion in mandatory funding per year for 10 years so that the National Institutes of Health (NIH) can respond to this crisis with the sense of urgency that it demands. Recently, Reps. Ilhan Omar (MN-05) and Ayanna Pressley (MA-07) have also introduced a companion bill for the Long COVID Moonshot in the House of Representatives"
"Second, an ME/CFS Research Roadmap Report was approved in May by the National Institute of Neurological Disorders and Stroke (NINDS). This is a step in the right direction toward clinical trials, but now we need the NIH to robustly fund it. You can contact your elected officials and ask that the NIH help make this a reality. These are also efforts that could pay dividends toward an ME/CFS platform clinical trial. This was recently recommended by Senior Investigator and Clinical Director Dr. Avindra Nath following the completion of the NIH ME/CFS Intramural Study. A platform trial or advancements in the Research Roadmap Report could potentially yield a lot of intel for Long COVID treatments and help inform the RECOVER Initiative, a research program by the NIH that aims to understand, diagnose, prevent, and treat Long COVID."
"Lastly, Long COVID and ME/CFS were highlighted in May at the Senate Labor, Health and Human Services, Education and Related Agencies Subcommittee FY25 NIH Hearing. During the hearing, NIH Director Dr. Monica Bertagnolli stated, “… I want to say about Long COVID and ME/CFS—we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do. Now we just need to deliver for them.” Millions of people would agree. A crucial step would be to establish a dedicated Center at the NIH focused on Long COVID, ME/CFS, and infection-associated chronic conditions and illnesses."