Over the next month, we’re going to try and ride the long-COVID wave once more – and bring home the goodies for both it and ME/CFS.
Long COVID is a hot item right now. It’s in the news and multiple bills supporting it are up for consideration in the U.S. Congress. Strike now and we could help to change our future. Let this moment pass and we’ll be in for more of the same for longer than we might have been.
Catching the Political Winds
We’ve seen what it’s like to ride the political winds, and to get blown away by them. We rode the coronavirus pandemic winds to an astounding $1.15 billion in funding for long-COVID research. We got squashed when a sharp uptick in CDC funding got blown away by other priorities, and when our attempt to get Congressional control of ME/CFS funding at the NIH ran into a highly partisan environment.
The only thing that is certain in dealing with Congress is that the stakes are high – in this case about $100 million high – that nothing is guaranteed (we have to fight), and that timing is critical. Right now, the long-COVID iron is still hot. Six months later, Congress may very well have other emergencies to deal with.
The last thing we know is that when Congress moves, it can literally, in the flick of pen, transform the future of a disease.
That happened with long COVID when, to our utter shock, Congress gave the National Institutes of Health (NIH) $1.15 billion to study it – thus virtually guaranteeing breakthroughs in understanding, and hopefully, treatments lie in our not too distant future.
That’s why if your goal is to end this disease as quickly as possible, then you simply have to go to Congress. It’s the only institution that can rewrite your and my future with a flick of the pen.
The last day to register for Advocacy Month and ride the Long COVID wave for it and ME/CFS is April 24th
The three efforts being undertaken during Solve M.E.’s Advocacy Month include:
The Treat Long COVID Act
The core of the long COVID Act for people with ME/CFS and other post-infectious diseases lies in its almost constant refrain to provide up to $2 million per grantee to support or create “multidisciplinary” centers which have expertise in treating long-COVID symptoms and “other complex post-viral conditions“.
My reading of this is that for a long-COVID center to get federal funding, it must also treat people with ME/CFS. That’s potentially a huge bonus for people with ME/CFS given the many long-COVID centers that are opening up.
Not only should this bill prompt long-COVID centers to snap up people with ME/CFS and related diseases, but it should also give existing ME/CFS centers like the Bateman Horne Center, the Institute of Neuroimmune Medicine, the Stanford ME/CFS Center and others the opportunity to get federal funding and expand their services.
The COVID-19 Long Haulers Act
The $90 million COVID-19 Long Haulers Act from the House of Representatives focuses on long COVID at first by providing $30 million to create a nationwide patient registry that tracks symptoms and the effectiveness of treatments for long COVID.
But then, in the last section – bang! – in hops ME/CFS. That section states the bill will fund registries that track “relevant issues related to individuals who experience “related post-viral illnesses overlapping with PASC“. Plus, the bill also requires the Department of Health and Human Resources to survey existing patient registries that include individuals experiencing post-acute sequelae of COVID–19 (PASC) – thus ensuring that our one patient registry that includes both ME/CFS and long-COVID patients – the You+M.E. Patient Registry – is included in the mix.
The bill also gives the Agency for Healthcare Research and Quality (AHRQ) $30 million to fund research on the United States health care system’s response to long-term symptoms of COVID–19, including “post-infectious disease treatment“.
The report that ensues – from one of the most respected medical assessment groups in the world – which can only report how little effective treatment is available to people with ME/CFS – is going to provide manna for ME/CFS advocates trying to get more support for better treatments.
After several sections that specifically focus on long COVID, the final section of this part of the bill again provides an “in” for ME/CFS and other “post-infectious” diseases by requiring the AHRQ to provide recommendations on ways to ensure that “access to quality post-infectious treatments” is provided.
Since no “quality post-infectious treatments” are available, the only logical response the AHRQ can provide is that much, more funding is needed to understand and treat post-infectious diseases. With that, we have a valuable thing – a federally produced report – like the IOM report on ME/CFS that doubled our funding at the NIH – will actually have some legs.
ME/CFS Experts Must Be Included
Plus the bill requires that the AHRQ consults with ME/CFS experts as it comes up with treatment plans for long COVID. It ensures that:
“PASC patients have access to medical professionals educated about post-infectious disease and treatments” and “provide guidance on PASC diagnostics, treatments, and care”.
That puts ME/CFS experts like Dr. Bateman, Dr. Peterson, Dr. Klimas, and others potentially right smack in the middle of the long-COVID guidance from the feds.
Long COVID / ME/CFS Public and Doctor Education Program Launched
ME/CFS experts should finally get their say to the broad public, as well. The bill states that the Secretary of Health and Human Services will disseminate to the public and health providers information (including treatment information) on diseases including “myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia (FM); postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia; connective tissue diseases, MCAS and others”.
All told, this federal effort will surely highlight the need for better treatments for ME/CFS, PASC, and related diseases – giving us ammunition to push for more funding for clinical trials, more research, etc. Plus, ME/CFS experts should be front and center helping to educate doctors on best-care treatment protocols, providing help for the many people with ME/CFS and related diseases who don’t have access to them.
In the end, this act further institutionalizes and embeds a disease – ME/CFS – that has had a lot of trouble getting traction in the traditional medical community. Getting ME/CFS institutionalized – integrated into the broad medical infrastructure of diseases – is something we’ve been after from day 1.
The Care for Long COVID Act
Finally, there’s The Care for Long COVID Act. This Senate bill from Tim Kaine, similar to the House bill, also creates a nationwide patient registry for people with long COVID and “related post-viral illnesses or conditions” which assesses symptoms, demographics, disability, and treatments”, that identifies obstacles to access for treatment for both long COVID and post-viral diseases, that provides recommendations to ensure that both groups have access to “high-quality treatments”, and creates a program to disseminate information to both the public and to doctors about long COVID and ME/CFS. It also requires that people with ME/CFS play a role in determining what information is provided.
The NIH already got more money for long COVID than it probably knew what to do with. As we continue to ride the long-COVID wave, the next opportunity is for treatment, the development of patient registries, and widespread education and recognition.
What’s on the line this time is about $100 million to fund: Centers of Excellence that serve both long COVID and people with ME/CFS, huge patient registries that include ME/CFS and long-COVID patients in long-term tracking efforts, and efforts to educate the public and doctors about both conditions.
If these bills pass ME/CFS gets embedded in these efforts – raising its profile and assuring that everyone knows just how darn devastating it is and how poorly it’s treated – and both diseases get more ammunition they can use to press for more funding and support at the crucial federal level where the really big progress can be made.
So hop on your board and join us as we ride the long COVID wave. :).
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