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.
Freedom from Fibro Summit Encore Weekend – Watch Any Presentation
Watch any of the 40-plus presentations from Dr. Murphree’s Freedom from Fibro Summit for free this encore weekend. If exploring alternative health options is something for you – or if you just want to explore what’s out there – Dr. Murphree’s Summits provide a great overview of the possibilities this large field of medicine presents.
The Summit provides simple techniques to reduce pain and anxiety, provides updates on the latest research, diet options (one of which has helped me greatly), ways to boost energy, the latest on fibromyalgia research (my presentation), etc.
Click here to check out the encore weekend and here to see a prior blog on it.
The last day to register for Advocacy Month and ride the Long COVID wave for it and ME/CFS is April 24th
Register for Advocacy Month!
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. :).
Register for Advocacy Month!
Aftern 38 long years of this DD, we need a cure. I would hate for my grand children, or anyone else, to suffer this disease everyone lauhged at it’s name, CFS, Do something NOW. PLEASE,
I am 59 I got sick really aT age 9 bed ridden since age 23..
unbelievable what has been done ..,,not done to us for us.
Just our lives.
It is hard to fathom. It’s amazing how easy its been for the medical profession and organizations like the NIH to just swept us under the rug – and for decades! I remember thinking decades ago that if I – a strong, very healthy young man – could get this sick – that surely there must be a team of people in the federal government working to figure out what happened. How disillusioning to find out that was not true.
Then the same thing happened with long COVID – it was clearly going to get swept under the rug again – until Congress intervened – so, it’s to Congress we have to go – and Advocacy Month is our chance to do that so that more people will not suffer.
Our daughter has been disabled for the past 38 years with ME/CFS. Does anything else really need to be said?
Almost an entire lifetime…She deserved so much more from our medical profession and the US government. I hope they are reading this.
I had covid and then was injured by my chiropractor. The symptoms started after all of this. Been checked for everything. Now going to long haulers clinic to determine if it’s long haulers covid or fibromyalgia.
Good luck Vonda. I imagine it may be both. The long COVID left you susceptible to a chronic pain condition when you got injured. Don’t expect too much – the clinics probably don’t have a lot to offer right now – but I expect that will change.
This is the first glint of real hope I have heard of since I got ME about 30 years ago. I’m keeping my expectations low but keeping my eyes on the progress! Thank you Cort, again and again, for your outstanding research and reporting on these critically important issues!
I have had ME for 34 years. Housebound for the last 10. Cort thank you so much for all you do for us. You and your information are a God sent. It means so much to me that we are not alone with this awful disease.
This all sounds very exciting that at last people like us with Long Covid, CFS, Fibromyalgia & Myalgicsephalomyalitus might have the chance to get well. My concern though, is that I live in Ireland & Not in the US. Will I have access to the assistance as set out here?
Hi Yvonne, I live in Ireland and Denis Naughten TD, has been trying to raise awareness on the lack of care for people with Long Covid. This is a link to a video of Denis Naughten TD questioning the Health Minister Stephen Donnelly TD. He brings up ME towards the end.
“The HSE is saying that they’re going to build on the existing level of service provision that’s there. Now, anyone that has suffered from ME or Chronic Fatigue Syndrome will tell you there aren’t the services there at the moment, so we’re building on very dangerous foundation.”
first see and then believe…
but also, it is incredible…i am alone, i feel alone…I feel after reading and trying even more alone…I thought we live in 2020 in a world… for solve not… i can severelly ill from my bed not even register for advocacy because of solve because i live in europe…if you can call it living, yes living like death…
It is always solve who exludes other continents… unbelievable… while like for excample OMF is with there researchers affiliated with, was it Sweden in Europe… thank you solve! i would like to say to solve: ME/cfs/long covid/fm/and so much more are world wide deseases!!!
It’s hard for everyone but it’s harder for people outside the US where it will take longer for the results to trickle down. Even here it’s going to take time. It took the NIH almost year to get its long COVID program set up and beginning and it will take time for those studies go really get going, then the results need to get published, etc. It’s going to take time but finally, we can see the potential for substantial progress.
I’m sure Solve wishes they had the resources to advocate worldwide. By advocating in the US, though, they can impact things worldwide given the money and support that the US Congress and only the US Congress can bring to the fight. That billion-dollar-plus in long COVID funding is going to help patients everywhere. If I was to think of one place to concentrate my resources for the maximum impact it would be here – so I think its a good thing that they do that.
I am even so ill, I wrote 2020 istead of year 2022!!! 🙂 or 🙁
Thank you, Cort, for your excellent reporting and for the way you continue to inspire hope.
Dear God in Heaven, Please cover all of this Horrendous suffering, of all these patients, the whole world over!
52 years EBV == 37 years bedbound
Cort you have earned your crown in Heaven for what you have done here.
37 years Pattie – if anyone knows the costs you do. Let’s hope we get some answers – the sooner the better. Thanks!