Check out Geoff’s narration
The Long COVID Moonshot proposal recently introduced by Senator Bernie Sanders is something that everyone with a post-infectious disease – and that includes people with long COVID, chronic fatigue syndrome (ME/CFS), post-treatment Lyme disease, postural orthostatic tachycardia syndrome (POTS), and even many people with fibromyalgia should want to succeed.
Why? Because if you take away the names, they all look like the same disease. The main symptoms (fatigue, pain, post-exertional malaise, cognitive, and sleep problems are identical. Beyond that, though, even the research findings are similar and that’s what’s so darn encouraging. Check out some of the similarities:
- Herpesvirus reactivations have been found in long COVID, ME/CFS, and fibromyalgia.
- Small fiber neuropathy shows up in fibromyalgia, POTS, ME/CFS, long COVID, and post-treatment Lyme disease syndrome (PTLDS).
- Dysautonomia permeates long COVID, POTS, fibromyalgia, ME/CFS, and PTLDS.
- Reduced cerebral blood flows produce problems in fibromyalgia, ME/CFS, POTS, and long COVID.
- Reductions in gut butyrate-producing bacteria indicate similar disruptions in gut microbiomes in long COVID, fibromyalgia, ME/CFS, and possibly PTLDS.
- Evidence of impaired fatty acid metabolism may be hampering energy production and/or increasing pain sensitivity in PTLDS, long COVID, ME/CFS, and fibromyalgia.
- Orthostatic intolerance is rarely associated with fibromyalgia, but it has been found in FM, as well as ME/CFS, long COVID, PTLDS, and, of course, POTS.
The proposal asks that the NIH spend $1 billion a year for ten years on long COVID. That’s real money. That’s long-term funding. That’s a real chance for long-COVID patients.
Just don’t expect the NIH to pick up the slack if this bill doesn’t pass. The NIH ignored long COVID until Congress gave it money to produce the RECOVER program, and then continued to ignore it. Long COVID, like ME/CFS, for instance, is still homeless at the NIH. No infrastructure has been built to support it – and that’s the kiss of death with funding.
The problem is that long COVID shares with ME/CFS, fibromyalgia, post-treatment Lyme disease, mast cell activation syndrome (MCAS), migraine, IBS, and others a suite of characteristics that have been kryptonite for the NIH. These are all complex, multi-systemic diseases that primarily affect women, are largely invisible to the eye, cause enormous amounts of pain, fatigue, and disability, and tend to strike people in the prime of their lives, but rarely cause death.
Despite the fact that they are common – each affecting millions of people – they are also the poorest funded suite of diseases in the NIH.
Millions of people have been waiting for decades for the NIH to help out.
One thing must be made very clear. Please do not think that if you’re a young strapping adult and suddenly can’t work – or if there are a million young strapping adults who suddenly can’t work – that that means anything to the NIH. It means zilch. The NIH does not care how well provided a disease is or isn’t. It has no interest in the fact that millions of people are being left adrift. Those facts simply don’t register for it.
Fibromyalgia is currently getting $13 million in funding for 10 million patients. ME/CFS is getting $13 million in funding for 3-7 million patients. That has been going on for decades. Two generations of patients have been on the waiting list to get adequate NIH funding and there’s no reason to expect that to change. Absent effective congressional advocacy, the most likely future for both is that they will still be getting $13 million/year in 20 years – and another generation will have lost out.
That’s the mess that long COVID has stepped into, and that’s why congressional advocacy is mandatory if any of us expect to get an answer for any of these diseases anytime soon. Do we want to win the long-COVID battle in 5 or ten years, or 30 or 50?
Whether you have long COVID, ME/CFS, FM, PTLDS, or another post-infectious illness, all of us need a long-COVID bill like this pass, and for a post-infectious disease to get the funding it deserves.
Find Out How to Support This Proposal Here
Missing Pieces
Not that that the bill is perfect. This remarkable coherence of symptoms and research findings is why advocates from a wide array of disease groups are fighting this week to establish an NIH Center for Post-Infectious Diseases and Conditions. The Solve ME/CFS Initiative’s recent white paper, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH”, demonstrates how important it is that each of these diseases be studied together in one place.
The Moonshot recognizes that the NIH’s neglect of infection-associated diseases has directly helped create the situation that long-COVID patients find themselves in when they get no help when they go to their doctor’s office.
“Long Covid is one of a number of chronic conditions triggered by acute infection, such as dysautonomia and ME/CFS, collectively referred to as infection-associated chronic conditions (IACCs). The historical lack of
investment in these conditions have in part contributed to the lack of preparation for the current crisis.”
The Moonshot also recommends the establishment of the Office for Infection-Associated Chronic Conditions Research at NIH to study all of them. Senator Sanders’s bill, however, provides funding only for long COVID. It’s the first proposed piece of legislation that I can remember in which the long-COVID community has chosen to go it alone. Every other bill – which the ME/CFS community has rallied around and supported – has had language that included post-viral illnesses. This is a bad precedent.
There is, after all, no reason to think that the historical lack of investment in diseases like ME/CFS, FM, PTLDS, and others that the Moonshot alluded to won’t continue if the long-COVID proposal is passed (in its current form). The neglect has only deepened with the emergence of long COVID: NIH funding for ME/CFS – the disease most associated with long COVID – didn’t rise after long COVID – it fell 20%.
By going it alone, the long COVID Moonshot will be missing the support of tens of millions of people with post-viral diseases other than long COVID. It will also be a party to the continuing neglect that millions of people have suffered from for decades. There’s no need for that. There’s plenty of room in a billion-dollar-a-year bill to include other post-infectious diseases.
Take these poignant statements from Josh and Adam on the Moonshot website:
Next, think about where Josh and Adam are 10, 20, 30, or 40 years without help. It’s understandable that people with long COVID want to focus on their illness but those are the people this bill is discarding and that is a heavy price. (You can find some of their stories on Health Rising’s Lives Interrupted page.) There’s enough room in this billion-dollar-a-year effort for other post-viral diseases. We don’t need to leave anyone behind.
The fix is so easy and this is the time to do that. Sanders has released a proposal – not a bill and there’s still time to change it. We simply need to insert “and associated conditions” into the proposal. Solve M.E. has created an easy way to support that. Simply sign onto the letter from Solve M.E. President Emily Taylor to Senator Sanders to add “and associated conditions” to the effort.
Sign the Letter Here
and please
Support The Proposal Here
Please make clear that there is no bill yet. There is a “legislative proposal” that Sen. Sanders is seeking input on. The fact that it is so preliminary means the focus now should be on improving it before it becomes a bill.
That’s good news! Thanks for clarifying that. It’s done:)
Important point! Thanks for pointing that out!
The 2 links to support the proposal that I clicked resulted in 404 pages – could you please take a look?
I sent a short letter to longcovidcomments@help.senate.gov (where they have requested feedback until 4/21) explaining how MECFS has dramatically changed my life. I asked that they please make this bill for ME/CFS, long COVID and other post infectious diseases. I’d like MECFS in the title of the bill and this is the time to ask for what we want. I also signed the letters linked to in this blog.
🙂
Tried to sign the letter to Sen Sanders but it requires an american phone number. Only american citizens kan sign?
Hi Cort,
You are making a very good and strong point with regard to NIH funding.
I heard you (from Canada— which is WORSE as far as Ostriches in positions of medical authority go…)
when you said that the NIH noticed the similarity between long covid and long-haul symptoms from lingering infections/viruses from decades ago. And when you said that they considered it “a mature subject” in terms of research and understanding.
But the truth is, as you said, that it is NOT mature as to what avenues and treatments it can explore.
It doesn’t take a rocket scientist to read, in the same day,
that long covid is healthcare crisis that will cost trillions of dollars (oooo… poor baby government)
and to also read that they have no f/n clue as to what is going on.
Here is my 2 cents, since it takes more than 1 to rub together:
We need to ALL STOP looking at symptoms as identifiers of specific diseaseas.
We ALL need to see that there are only so many negative symptoms which can occur, before it becomes redundant.
I put the number at 10. Pain, redness, fatigue, lack of cognitive clarity, poor sleep, reduced mobility, loss of balance etc.
We only have ONE HUMAN BODY. IT ONLY HAS A LIMITED NUMBER OF SYMPTOMS.
THEREFORE: it seems to me prudent to stop subdividing people who respond and who don’t to specific treatments as “subsets” because the source has not yet been determined.
That is OLD SCHOOL !! To say that symptom 1, 3, 5,6, and 9= Kidney failure.
All of the main symptoms of the homeostasis systems becoming dyshomeostatic can happen for a host of reasons (causes) and that is why there is no “known cause” of CFS… or why it is IDIOPATHIC.
Okay. IDIO means unique to the individual or the subset.
But NO ONE has a patent on : pain, poor circulation, low heartrate variability, widespread pain.
NO ONE.
It is POINTLESS to try to isolate one gene or one bacterium or virus.
This has become clear to me as a
SYSTEMIC DAMAGE.
What I mean here is very important:
I don’t mean the PROBLEM is sytemic. That much is already clear.
I mean the DAMAGE occurring to …. trust me on this… smooth muscle tissue
SYSTEMICALLY, or … without exception
is widespread. Not just the systems.. the DAMAGE.
But certain types of damage can be healed.
Certain dysfunctions can be REVERSED.
A good example is atherosclerosis resulting from widespread vessel damage
which triggers replacement of elastic cells by collagen cells,
the deposit of calcium,
which sticks to cholesterol,
then plaques.
which altogether squashes BLOOD PRESSURE VARIABILITY.
If you were to ask me,
then I would tell you:
From my research analysis, all the 1900s pandemics had a long-haul subset,
and it has always been 1-2 percent. That includes polio.
While the FLU pandemics have used sialic acid receptors a2, 3 and a2,6,
and while the corona viruses have used ACE2 receptors to enter and infect cells,
BOTH have done serious damage,
NOT ONLY to vessels cells,
but
to ALL smooth muscle cells that use ACE2 receptors.
Lungs spring to mind in Covid, but lungs in covid are only the entry-point.
This leaves us with the mitochondrial dysfunction.
You recently gave a “gist ” from some research that there is conformational mitochondrial change during prolonged infection.
We see fever, reduced energy production, healing.
But when the fever etc. failed to ERADICATE the virus (dormant now in nerves or
CSF),
the autoimmune system persisted in attacking flare-ups of non-eradicated microbes.
Okay.
Bottom line: constant low-grade inflammation PLUS, raised flare-up inflammation.
I am not sure if you have watched or read the latest interpretations of causes of death in the USA,
but 14/15 are from inflammation based diseases,
and 1/15th is from physical trauma.
Heart disease begins as vascular inflammation disease.
Diabetes and obesity speak for themselves.
In conclusion,
I want to say that it is OLD SCHOOL to blame one bacterium or one virus.
It is OLD SCHOOL to use one drug or one lifestyle modifcation
to defeat
a mis-diagnosed “disease” that has been given a name and assigned, say, 8 symptoms that mean YOU HAVE IT.
Instead, the answer lies in treating the MOST FUNDAMENTAL failures in the organ
systems: (gut, kidneys, BBB etc.) and nourish the healing of
SYSTEMIC DAMAGE such as the use of Citrus Bioflavonoids to heal vessel and capillary damage, plus K2 to awaken the calcium system and have it remove calcium deposit on arterial walls/vessel walls.
Get some simple things going.
Lower inflammation.
Correct hydration and electrolyte balance.
Supplement.
TREAT the BASIC SYSTEMS
and forget looking for a drug to surgically strike one gene.
Respectfully,
Chris
HERE ! HERE !
I wonder
If one were to add up all the funding these chronic diseases have EVER gotten from the NIH, would it even reach the amount one of the top funded diseases at the NIH gets in a single year?
On another note, I wonder why I wasn’t emailed about this by SOLVE, I’m subscribed to their stuff and this seems pretty major. Checked “spam” and “all mail” but it isn’t there
I get stuff from SOLVE now and then such as donation requests, newsletters, webinars, stuff about meetups for advocacy such as advocacy week, so I thought I would be alerted to anything about signing petitions and such. I looked over their website just now but, while there is all kinds of stuff about advocacy, there isn’t a simple straightforward way of signing up for email alerts and selecting what kind of alerts. There is a button down at the bottom of the page all the way on the right side for newsletter subscriptions.
You would think they would be trying to get people permanently connected to their organization through email as quickly as they can by, say, having a button on their homescreen that would immediately grab visitors attention and state it’s position clearly instead of it being some unclear part of a dropdown menu or at the bottom of the page. Other charities I’ve been involved in were frequently sending out requests to sign petitions or send prewritten digital letters to representatives, perhaps SOLVE doesn’t do that kind of thing much, so it has slipped through the cracks of their alerting service
Makes me wonder, what if they aren’t alerting lots of people who would be devoted supporters without realizing it?
Lane, it was near the bottom of the “Solve Advocacy Week 2024” email that came in on April 13th.
Re Solve, my experience with Emily from when she first joined Solve was that if you don’t pay, you don’t consistently get emails. Also, I think they’ve been pretty absorbed in the leadership transition there.
Hi Cameron,
Subscription to our emails and newsletters and access to all of our webinars are completely free of charge.
If you’d like to send us your email address, we can check to see that your email/mailing address are current in our system and that you are fully opted-in for all of our correspondence. If you’d like us to check, please send a note to us at solve@solvecfs.org.
Thank you,
Karman (Solve M.E.)
HI Lane,
Thank you for your suggestions for our website. We have sent several emails about the moonshot and our open letter to our subscribers and are happy to send you an email directly now if you’d like to send us your email address. You can send your email address to us at solve@solvecfs.org.
Thank you!
Karman (Solve M.E.)
If I recall correctly, the Long Covid people didn’t want anything to do with ME/CFS from the get go, since they considered themselves to have a real disease but ME/CFS not to be a real illness. I’m not at all surprised that they dumped us. I personally will find it difficult to support this bill as it stands.
My anecdotal evidence is that friends with long covid or long Vax get real quiet when you start equating cfs/me with their plague. They usually don’t want to get lumped in with a bunch of malingerers who are probably mentally ill. Medical Doctors for the most part have poisoned the water to the point that if a definitive test or treatment comes someday. It will be by accident, while the are trying to fix a cash cow like breast cancer.
I hope they realize there’s power in numbers and that we worked together to get the $1.15 billion in NIH funding. Every year since 2020 the main advocacy goal of the Solve ME Initiative has been to pass long COVID and post-infectious disease legislation. They cofounded the Long COVID Alliance. We’re stronger if we work together.
To Cort’s reply – We certainly are! My initial grumpy reply was to just not support the initiative as it is. Now I’m more interested in knowing how we can work together to improve it.
I hope Solve of #MEAction will propose something. I don’t really have the oomph to take any lead myself.
Thanks for that comment, Cort.
Thank you!
This is ironic.Long Covid is considered a psychosomatic condition. And then these patients look down on ME/CFS? Wow…they still have a lot to learn. What ME/CFS patients already know. Who has an imaginary illness now?
Hi Cort. Thank you for the blog. I was a post-Lyme (recovered) patient until my 2nd PfizerBNT booster and probable C. I am participating in the Yale LISTEN Study as well as a vax injured Study with NIH.
I wrote Senator Sanders last week and asked for other conditions, as well as vax injured, be considered. I concur with the thesis, that to one extent or another, we may all be dealing with the same essential problem or set of problems and what helps one group will also benefit another. But..just to restate, those with vax injury need to be included in the Bill Proposal.
Sorry to hear about the vax injury but good to hear that you’re in those studies. Vax injury is another condition which looks very, very similar doesn’t it? And it makes sense as it’s only a small step from an actual infection to a vaccine that alerts the body about that infection.
Thank you. Yes. I agree it makes sense. The LISTEN Study, which is looking at both LongC and LongV groups finds reactivated infections, disrupted cortisol rhythms and near identical immunological signatures in both LongHaul groups with distinct differences from controls in both groups. Unfortunately, I have nothing to offer from the NIH Study, which incidentally is being lead by Brian Walitt, as I’ve just completed my initial interview to be included in the Study and have received word that I’m in. Happy to keep you posted and share my thoughts as I go forward.
Nice! So glad you’re in that. I hope you can keep us informed 🙂
I will definitely do so. And forgive my own likely neuro-cog deficit at the end of the day, but have you seen the MAESTRO/MIT Study being initiated by Dr. Tal? If not, looks as if a nice dovetail into the “We’re all one big happy family” thought process.
Lyme and Long COVID – that’s the kind of study we could really use.
This is exactly why I believe childhood vaccines may be the culprit behind all these illnesses. I for one have been sick my entire life.didnt know it way back when but when I add up all the pieces to the puzzle,my finger keeps pointing at childhood vaccines.
Mercury in a vaccine…. one of the most toxic elements known to exist and it was in childhood vaccines back in the day!
GASP!!
look at gulf war illness(syndrome),…the soldiers were all given many vaccines. Not much difference between that illness and me/cfs etc.
Is there any scientists looking into these similarities of the two or shall I say…similarities of all of the illnesses?
Thank you for continuing to cover this topic that is vital to affected patients and their families. I hope that children and young adults suffering from infection-associated chronic conditions PANS and PANDAS, many of whom have POTS and other forms of dysautonomia, do not get lost in these discussions.
Recommend putting the call to action (2 links) at the top of the article too. Can easily get lost otherwise.
I asked them to publish a Standard of Care document on how to treat long-covid, with the newest information, at least yearly, and push it out to medical systems, instead of hoping they find it. It needs to include screening for PEM, to prevent physicians from injuring patients with inappropriate exercise and physical therapy levels, driving them into more disability. I hope they decide to do it. I also talked about including ME/CFS.
This is a great idea👍, and (relatively) is an easy actionable step to take!
THIS NEEDS TO HAPPEN!
I remember in early days of Long Covid reading that many Long haulers, in a misguided effort to be taken seriously, wanted to disassociate themselves from the ‘controversial’ illness of ME/CFS. The next thing I noticed, especially on various Long Covid Facebook groups, is how many of them were clearly having difficulty adapting to their new condition emotionally and psychologically, in a way that I don’t see much in long time pwME/CFS. And yet my suggestions that pwME can offer valuable guidance to pwLong Covid didn’t always go over well. (And technically I have both conditions).
Sadly, it seems those problems have persisted. Solidarity is our only way forward but it only works when everyone embraces it. It’s truly admirable that Health Rising turns the other cheek and continues to advocate for the Long Covid community.
Done! Thank you for including the links. Let’s share with friends and family now and get more signatures.