H.R. 7057 – The Understanding COVID-19 Subsets and ME/CFS Act is back. There’s a reason this is taking so long. It’s the same reason that it’s taken 4 years of work to get to this point.
H.R. 7057 provides a new funding stream for ME/CFS – and supports the COVID-19 long haulers as well
This is not just an attempt to get more money for ME/CFS: it’s an attempt to transform Congress’s relationship to our disease – from that of being mostly a bystander to being an active participant. This is getting Congress to take a hands-on approach to ME/CFS and telling the NIH what it wants to have happen.
That’s a huge and potentially historic shift which opens a new realm of advocacy for us. Instead of fruitlessly, for the most part, asking the NIH for more money, we get to ask sympathetic members of congress to support us.
The difference is “pull”. We have very little pull at the NIH – and it’s shown – look at our funding. Congress is another story, though. While congressmen and women are naturally reluctant to tell the NIH how to do its business, they do have oversight responsibility of the agency – a job some of them take seriously – plus they are beholden to their constituents.
They get our story. They get that 1-2/12 million sick people in the U.S. getting $12 million funding a year is a joke. Given that they have responsibility for how the government operates, that bothers them. Plus, they know that a happy voter is a voter in their corner. In other words we have real pull with them. Our message resonates with them in a way it doesn’t resonate with the NIH.
Congress provides the most effective pathway right now for more resources.
It’s Working …
We have come a long way. Four years ago Emily Taylor put forth a long term plan to the Solve ME Board to get Congressional funding for ME/CFS. A year before that, in a striking editorial “A job for a lone Congress member: Speak up for a forgotten disease” published on The Hill, Llewelyn King asked for a lone Congressperson to stand up for this disease.
In four years how things have changed. H.R. 7057 started with Rep. Jamie Raskin – who, in a nice twist, just happens to represent the district the NIH is located in. When the House recess started a couple of weeks ago, we were at around 20 co-sponsors with one Republican signed on.
With 32 co-sponsors now the effort to pass HR 7057 is gaining steam (Image by Wolfgang Eckert from Pixabay)
Now that the House is back in session, we’re up to 32 co-sponsors, and have two Republicans signed on. A big congratulations to the work of the advocates, and, in particular, to those who enrolled the three Republicans: Brian Fitzpatrick of Pennsylvania and Jack Bergman of Michigan. (Republicans, as a group, are less amenable to telling the NIH what to do). The California (7 Congressmen enrolled) and Florida (4 Congressmen enrolled) advocates have been particularly effective at getting their representatives signed on.
This is like a ball rolling downhill. Every person that signs on improves our chances of others signing on.
Here’s what passing H.R. 7057 will do for ME/CFS:
H.R. 7057: The Understanding COVID-19 Subsets and ME/CFS Act
- It will authorize a baseline amount of funding for ME/CFS ($15 million) that the NIH cannot take away – not even if the NIH’s budget is slashed next year to help rein in the tremendous budget deficit the U.S. will be facing next year. (See explanation of “authorize” below).
- It will likely increase funding more than that (see below).
- It will finally, finally – produce a funded grant award – something that’s sure to increase our funding, and bring new investigators in. We’ve been pushing for this for years.
- It directs the NIH to study both people with ME/CFS and COVID-19 survivors who have ME/CFS symptoms.
- It directs the NIH to conduct epidemiological studies (it’s been years since one has been done) that assess the prevalence and impact of ME/CFS in the US and COVID-19 patients with ME/CFS symptoms. These will give us ammo for more resources.
- ME/CFS gets inserted into Medical Education efforts at Health and Human Services (HHS).
- It will produce a report in two years on its work with COVID-19 survivors with ME/CFS.
Taking Action!
The Solve ME/CFS Initiative (Solve M.E.) has pulled out all the stops with this action. They created the bill, hired a lobbying firm to help with it, devoted their Advocacy Day to setting the stage for it, recently did a Legislative Cafe Chat (see below) to help explain it – and created a really nice Action Center to support us in making a difference with this bill.
Along with information on the bill, the Center provides a variety of different actions – from emailing, to social media posts to calling – attuned to different energy levels – and scripts and talking points that can be used in each. I’ve never seen an advocacy effort that is so well spelled out.
Click here to take action on H.R. 7057
Check out the Cafe Chat with Solve M.E.’s Emily Taylor
The Cafe chat lets us know why and how the bill was created.
- Check out ME Action’s support of this bill
Getting Technical About the Bill
Some questions have shown up around the bill. If you’re interested in learning more about it, just keep reading.
The $15 Million Question
“Legislation is the art of compromise; it is a fatal error to think you can use the legislative process to get 100 percent of what you want.” Tom Sheridan of The Sheridan Group
The legislation will protect and add to current funding – and could increase it significantly.
Why just $15 million when ME/CFS needs so much more? Because the goal right now is to set the stage for more funding.
Not once in over 30 years has Congress stepped in to force funding for ME/CFS.
The first step, then, is to get Congress to get its feet wet – authorize some funding for ME/CFS at the NIH – and then, once it’s in the game, ramp it up. This takes time. Legislative efforts typically take several years to come to fruition. As Laurie Jones of ME Action noted, “Congress work is a long game, not a short game.”
Emily Taylor explains why it’s impossible to ask for more than $15 million now – and why that will change if the bill passes.
This is not to say that the bill won’t increase ME/CFS funding – it will – and perhaps by a significant amount. Since NIH funding is about $12 million/year, passing the bill will increase funding by about 25% – not a lot, but you take everything you can get.
If as Emily suspects, though, the two major Institutes (NIAID, NINDS) keep their ME/CFS funding as it is – and the NIH adds on the $15 million from the bill to that – our funding will increase significantly. If the other Institutes stick with their current commitment our funding could double – to $30 million/ year.
“I think these two agencies will continue to invest in ME/CFS and, combined with H.R. 7057, we’ll see a sizable increase in funding.” Emily Taylor
At the very least, then, fifteen million dollars would be our new baseline – and with the budgetary issues the federal government will be facing next year – it might be very helpful to have a Congressionally mandated baseline for ME/CFS.
Authorizing vs Appropriating
We are learning a lot about how things work at the Congressional level. The language of the bill – written the way bills have to be written – is as muddy as can be. The key term in this case is “authorized to be appropriated”.
“There is authorized to be appropriated to carry out this section $15,000,000 for each of fiscal years 2020 through 2024.”
Some people have pointed out that instead of appropriating money, the bill authorizes money to be appropriated.
That is actually how it should be. Getting money out of Congress, it turns out, is a two-step process. Getting the authorization to appropriate money is simply the necessary first step in getting the money appropriated.
Tom Sheridan, in “Helping the Good to do Better”, explains below how this works with regard to a non-profit which got an appropriation authorized, failed to move to step two, and never got any cash. He called authorizations “purchase orders”.
“Once you have a bill that authorizes a program or service, you then need to go through another process to get the cash. (Failing to do that) is a common but fatal error.”
Indeed, if the bill is passed, the next step according to Emily would be to have “our advocacy team and Congressional champions call upon the appropriations subcommittee members to finalize the distribution of money into our newly authorized program.”
(If the bill gets attached to the larger COVID-19 bill, it will authorize and appropriate money at the same time – and that second step will not be needed).
This could be a major game changer for ME – a big thank you to all those members of Congress and all those advocates who made this happen, especially Emily Taylor.
And thank you for explaining it all so succinctly, Cort — it’s a complex process!
I can’t help advocate directly as I’m not a US citizen, but this will help ME patients around the world. I hope the bill is passed.
I second ALLLL of this! Except the ‘not a US citizen’ part I have NOT shut up about this and am not about to!! 😀
Also the part about doing another survey to figure out exactly HOW many ppl seem to be diagnosed, and how many (esp prevalent with more mild cases) are, like myself, walking around (when I can!) undiagnosed?? This was already overdue and of MEGA importance even before rona.
Now?? It will tip the scales even further.
IMO there were, pre-rona, already at least the 2.5M if not wayyyy more people who fit at least a broader/milder definition of the disease. I think this is probably low both bc of the lowered dx rates–higher underdiagnosis rate–in BIPOC communities AND the horrifically crappy state of healthcare access in the US generally. in other words, if we already know that BIPOC are definitely underdiagnosed relative to white people, my hunch is that that is almost fully explained by “pure” cases of direct interpersonal racial discrimination (which is also “generally underdiagnosed” LOL by white people/institutions generally), and that the impact of lack of healthcare access is there, but completely obscured bc it affects every group! –in other words there are also a ton of white people who aren’t diagnosed bc they’ve had crappy healthcare both clinically and financially/coverage-ally–even if the system also adds a whole other layer of lowered likelihood that a BIPOC person will be believed/heard/interpreted with any empathy.
Anyway. At leasat 2.5M ppl pre-rona–maybe higher.
And now, If the estimates from actual experts we trust hover around 10% (or even 5%) of all COVID infectees developing me/cfs or a similar illness–and please correct me on that horrifying percentage if my perception is wrong, that’s the “upper” threshold that I think could be higher!!
And we’re fast approaching 7M documented cumulative infections so far in the game…so that’s another 7M*10%=700,000 additional me/cfs patients right there. And that might be based on drastically undercounting: the pre-existing/pre-rona estimate of folx w me/cfs AND/or the # of people who are so far infected with SARS-COV-2 AND/oR the percentage of folx who develop an “ME/CFS-like” illness! That’s a lot of possibilities for this to be low by a factor of 1 or 3 or 5.
What is clear is that even with that relatively conservative low end–3.2 million people now already living/trying to figure out how to “live” with this disease–that is a gynormous proportion of the population!! “This” disease–whether me/cfs is biologically “one thing” or a cluster of “things”–has to account for some substantial portion of the nation’s population. Even just 1 million means that everyone likely knows a few people with it! assuming people know 700-1000 people which might be off on my part!) If it’s 3.2 million, that’s more like it affects every 1 in 60 or 1 in 90 people in the US! To think of something that sickens THAT many people (even mildly!) going so underfunded is INSANE–and that’s excluding the havoc it inflicts on severe patients’ lives here in the real (not hypothetical) world.
One piece of good news is that if the bill passes it includes epidemiological study which should ferret out how many people are walking around sick but undiagnosed.
I think you’re probably right – there are more people ill than we think now. Dr. Bateman, if I remember correctly, has suggested that as well.
One problem with the NIH is that they don’t give a darn about how many people are ill – their systems do not take that into account – but Congress – they do care and they can do something about it – that’s why its so important to get them on board
So if a fresh survey is done?
My money is on a new alarm bell
getting rung.
(reco singing to the tune of Erykah Badu’s cover of Biggie’s GET MUNNY…)
and then calling your local congressperpul.
😀
Because the bill authorizes to appropriate, but not to appropriate, we all need to keep pushing the ‘appropriate’ process. Many bills are passed in Congress–but because of defunding or limited funding, they never are fully actualized.
Moral of the story–keep on bugging your Congress person(s)!!!
I think it’s a good move to attach it to Covid ‘long hauler’ research, but worry that Covid alone could suck up the majority of the money–but I guess you do what you gotta do–same way with Dr. Klimas linking ME/CFS with Gulf War Syndrome.
So let’s keep up the pressure, and pray to God we can get the funding!
Thanks for bringing this to our attention again Cort!
can it be passed as part of COVID funding and also “compare” long haulers to folx who got sick without COVID playing a factor?
Yes! I didn’t know that before. Right now the bill is at the House and Energy Committee energy. We need to get more co-sponsors – get it through the Committee – get it voted on and then move onto appropriations.
Tying to the long haulers only makes sense. Most of the bill is focused on ME/CFS, though. Given all the research done on ME/CFS expanding our research may be the quickest way to help the long haulers.
Comment on Health Rising
I am ALL IN for increased funding for ME/CFS, BUT/AND if the justification for this funding is ‘Long Covid’ than it seems like it must include funding for MCAS (Mast Cell Activation Syndrome) as that is just as likely the cause.
Doctors/Researchers Afrin and Moldering’s, among others, believe MCAS is what is driving ‘Long Covid’, see link paper below, as do I. I also think the distinctions between the diagnoses ME/CFS, MCAS, and even fibromyalgia are perhaps distinctions without a significant difference. Many of us have collected all three diagnoses!
So of course, ME/CFS needs and deserves funding as does MCAS, but if the rationale is about ‘Long Covid’ —MCAS needs to be part of this bill.
Here’s the link to the open access Afrin, et al. paper:
“Covid-19 Hyperinflammation and Post-Covid-19 Illness May Be Rooted in Mast Cell Activation Syndrome”
https://www.ijidonline.com/article/S1201-9712(20)30732-3/pdf
Cate, if their theory bears true, would that be potential Nobel prize worthy?
Do their findings jive with any cfs/me researchers work on mcas?
Hi Cate, that’s a very interesting article. Many of my issues are, I think, inflammatory. I do take 10mg of an antihistamine cetirizine most days, as I believe they keep my immune response less reactionary.
However that may not be the case for everyone.
I think it’s great to see so many people coming together to advocate for people with ME/CFS: Llewellyn King, Solve M.E., and #MEAction.
I’m a great believer in just picking up the phone and calling people, writing to them or emailing them but I realise that is more difficult for others, for various reasons. I did contact Solve M.E., in August, querying them about the level of funding being asked for in H.R. 7057 and was there a reason that they were asking for $15 million and not more? I emailed their contacts section and left a couple of voicemails for Emily Taylor. Initially I didn’t hear anything and I thought Oh well, never mind – they’re very busy.
However I then received an email from Jessica Brown-Clark, (Engagement Coordinator with Solve M.E.) and Emily Taylor responded to my question and explained all about H.R. 7057 – which I thought was very good of them. Unfortunately I couldn’t watch the Cafe Chat live, due to the time difference (as I’m in Ireland it would have started at 10.30pm, I think). However I’ve subsequently watched it a couple of times and I thought Emily did a great job of explaining a very complicated process… If you’re thinking you’d like to contact them, all I can say is I found them – Emily and Jessica very easy to communicate with.
In Ireland we have an Health Service Executive (HSE) Working Group on M.E., which was set up in response to a formal complaint made by Christine Fenton, who has ME. It has been delayed by Covid-19 but I hope to participate, via my membership of the Irish ME Trust.
Christine Fenton has written an update and explains what they are looking at in the Working Group:
http://meadvocatesireland.blogspot.com/2019/05/update-on-hse-working-group-on-me.html
I’ve put a letter together myself (took me ages) and have emailed it to various Ministers. The two Ministers dealing with Disabilities replied, stating I needed to send it to the Minister for Health Stephen Donnelly T.D., so that’s what I have done. I wonder whether my letter will disappear into the depths of the Department of Health, never to be seen again! However, whatever happens it will have been read/glanced at by a number of people and that might raise awareness, if nothing else. I know they received it because I was sent an automated reply – also saying it might take them a while to respond…
Anyway, back to the blog – it seems momentum and a concerted effort is building for H.R. 7057 and that’s great to see.
The FMa test may at least help with an actual diagnosis. Epigenics does the test. It is sponsored by Dr. Gillian and Mass General and FDA approved in conjunction with DCG vaccine which has been around for 50 years and proven safe. Also has been looked at in conjunction with COVID. This is what I remember from article so may not be completely accurate but best I can do for now.