Is there a legal basis by which ME/CFS researchers can claim the same funding that long COVID scientists get (Congress awarded LC $1.15 billion)?

[Hip]

The US Congress awarded $1.15 billion in funding over four years to the NIH for research into long COVID (ref: here). So that's about $250 million per year of long COVID research funding.

Whereas at present, the NIH only gives $17 million a year for research funding in ME/CFS.

$17m is a very small amount, as the NIH gives Parkinson's $263m a year, MS $126m, Alzheimer's $3059m, autism $288m, PTSD $142m and ADHD $72m (ref: here).



Given that long COVID is a very similar disease to ME/CFS, is there be any legal basis by which ME/CFS patients and ME/CFS researchers could claim the same sort of funding level from Congress?

Would it be possible to take legal action against the government in order to obtain research funding parity between LC and ME/CFS. Or set up some sort of petition asking the government to review its funding?

Do we have any legal experts here?



Some argue that because LC and ME/CFS are so similar in their symptoms, any research findings and treatments for LC may benefit ME/CFS patients also.

While that may be the case, it is also possible that long COVID may have a completely different pathophysiology to ME/CFS. So in this case LC research may yield treatments that work for LC patients and the coronavirus infection that may be driving LC, but which may not work for ME/CFS patients whose illness is associated with other viruses like enteroviruses or herpesviruses.

Thus a cure or effective treatment for LC may soon be forthcoming as a result of this massive $1.15 billion investment into long COVID research, but regular ME/CFS patients may not benefit from that treatment.

This does not seem right, given that LC and ME/CFS have very similar symptoms, and are equally debilitating. So the ME/CFS patient community may want to start thinking about what we can do regarding this research funding inequality, and how we can get funding parity with LC patients.



Decisions made by public bodies such as governments are bound by certain laws. One of the legal requirements is that decisions must be rational and evidence-based.

It would not be rational to award patients with one subset of ME/CFS (the long COVID subset) a massive amount of research money in order to find the cause and cure of their illness, while awarding 15 times less money to patients from another ME/CFS subset (the regular ME/CFS patients).

How could such as decision ever be seen as rational and evidence-based? Therefore I think we can conclude that there may be a basis for the government acting contrary to law.

 

[Rufous McKinney]

Do we have any legal experts here?

generally, we are told private citizens cannot sue the federal government. (Law School Graduate here, Kindergarten Class). (But still...seems so right)

So the ME/CFS patient community may want to start thinking about what we can do regarding this research funding inequality, and how we can get funding parity with LC patients.

I have written to my Congresswoman before and she supports ME stuff and alot of our Military which might include the whole Gulf War funding issue..

 

[Mary]

Would it be possible to take legal action against the government in order to obtain research funding parity between LC and ME/CFS.

I don't think so. There's no requirement (that I'm aware of) regarding funding parity between illnesses. This has long been a very sore thorn in our sides. MS got $131 per patient last year, compared to $8.50 per ME/CFS patient (based on estimated 1 million MS patients and 2 million ME/CFS patients). I'm sure LC got this huge grant because the people who dole out the money (1) believed it was real and (2) could imagine it might happen to them. We've begged for money. In 2016 or so Francis Collins, then head of the NIH, promised huge funding increase for ME/CFS. Yeah - well, they did double ME/CFS funding from $7.5 milliion to $15 million in 2017. It makes you want to cry.

You can see funding for various illnesses here: RePORT (nih.gov) AIDS gets a bazillion dollars a year in funding. (I looked this up once, it was thousands of dollars per patient, compared to our $8.50)

I like your thinking but I don't think there's any basis for such a lawsuit unfortunately!

 

[Hip]

generally, we are told private citizens cannot sue the federal government. (Law School Graduate here, Kindergarten Class).

Interesting. What about organisations such research institutions, universities, etc who are involved in ME/CFS research. These organisations are desperately short of funding. Could they sue the government?

 

[BrightCandle]

I seeing quite a lot towards "viral persistance" for Covid 19 and thus the treatment for that is likely going to be Paxlovid or something similar, its almost certainly going to be specific to that virus. The mechanism of determining this hopefully would help researchers ascertain which viruses underpin ME/CFS but the treatment wouldn't help us. This is looking likely at this point unfortunately which means all that funding is not going to help much at all.

But maybe what it does it spurs the moment of proof of cause and that may bring funding for the development of vaccines and anti virals but it means a much longer wait than for Long Haulers.

 

[Wishful]

$17m is a very small amount, as the NIH gives Parkinson's $263m a year, MS $126m, Alzheimer's $3059m, autism $288m, PTSD $142m and ADHD $72m

Hmmm, do you think that the funding correlates with how likely the politicians think they are to need treatment?

AIDS gets a bazillion dollars a year in funding.

Yah, I can imagine politicians/upper managers feeling that they're more likely to get AIDS than ADHD.

 

[Mary]

Interesting. What about organisations such research institutions, universities, etc who are involved in ME/CFS research. These organisations are desperately short of funding. Could they sue the government?

I don't think so. You need a legal basis to file a lawsuit and again, there's no requirement that the government have parity in research funding. Actually there's something called disease burden, and based on disease burden, ME/CFS is waaayyyyyyyyy underfunded compared to other illnesses.

Also, lawsuits cost a gazillion dollars and research institutions and universities do not have thousands and thousands of dollars to spend on lawsuits like this.

However, you made me think of something - perhaps universities and ME/CFS researchers could APPLY for some of that long covid money, making the argument that ME/CFS research would benefit LC patients due to research already in place across the decades - they could come up with a good basis for this. I have no idea of the likelihood of success, though it seems this could be worth pursuing.

Hmmm, do you think that the funding correlates with how likely the politicians think they are to need treatment?

That's exactly what I said about long covid above, why they got so much money - I think the people who control the money can imagine it happening to them, unlike ME/CFS. If they only knew how much these illnesses have in common!

 

[godlovesatrier]

I mean even if you did do all that. They could still block any changes from happening. I think it would be difficult to get them to change their approach to funding it.

I think a sea change in general is needed. Sadly I grow a tad despondent about when this is going to happen.

 

[Rufous McKinney]

, its almost certainly going to be specific to that virus.

Some of the long covid research seems to Id other viruses reactivating... I just saw something about 20% its Eppstein Barr, also our other viral friends to lessors percentages...

 

[BrightCandle]

Some of the long covid research seems to Id other viruses reactivating... I just saw something about 20% its Eppstein Barr, also our other viral friends to lessors percentages...

There is always potential it comes out common, by no means is covid persistence the only explanation for what is going on. But if it turns out to be the case that research isn't going to help ME/CFS patients at all.

 

[Mary]

generally, we are told private citizens cannot sue the federal government. (Law School Graduate here, Kindergarten Class). (But still...seems so right)

Actually, you can sue the federal government under certain circumstances - e.g.,

The Federal Tort Claims Act (FTCA) holds federal government agencies and employees accountable. Under the FTCA, citizens can sue the federal government in certain wrongful act and negligence claims.

Can You Sue The Government? Lawsuits Against State & Federal Agencies (torhoermanlaw.com)
It gets complicated and I'm sure there are other grounds for lawsuits against the federal government. but for any law suit against anyone, you have to have a legal basis or cause of action and just being unfair isn't one of them unfortunately.

btw, what is the Kindergarten Class of law school? ( I went to law school for a year and a half when my kids (twins) were 4 years old but dropped out, and then I worked for attorneys for 25+ years until ME/CFS hit. They (my kids) used to get out their books and copy what I was doing, underlining paragraphs etc. very studiously - they were (and still are) very smart! )

 

[Rufous McKinney]

btw, what is the Kindergarten Class of law school?

I decided to go to law school, but my Senior Professor talked me out of it. And I worked for a lawyer, and did alot of work with lawyers..so I call that Kindergarten Law School!

Standing...

It gets complicated

sounds like its going after an employee...of the Federal government for something wrongful or negligent...

 

[Hip]

I don't think so. You need a legal basis to file a lawsuit and again, there's no requirement that the government have parity in research funding. Actually there's something called disease burden, and based on disease burden, ME/CFS is waaayyyyyyyyy underfunded compared to other illnesses.

Yes I appreciate the need for a legal basis; I would imagine (or hope) with some creative thinking, a legal basis might be found.

This article applies to UK law, but I imagine similar laws may exist in the US:

Public bodies, such as central and local government, have to obey the law. The type of law governing the conduct of public bodies is known as ‘public law’. Public law should ensure that public bodies act lawfully, rationally, fairly, and compatibly with the human rights of those affected by their actions.

Where a public body acts unlawfully, there are a number of ways that those affected can challenge that behaviour or decision. These include:

Complaining using public bodies’ complaints procedures or Ombudsmen
Exercising rights of appeal to a tribunal (if such rights exist in relation to the particular decision to be challenged, such as in welfare benefits cases)
Asking a public body to review its decision
Through a process called judicial review

It is not rational to give long COVID a great deal of research money, but then give other subsets of the same illness (ie regular ME/CFS) very little money. So it could be argued on the grounds of rationality that the allocation by Congress was unlawful.

Neither is it fair to give some ME/CFS subsets lots of money, and other subsets much less. So here are two grounds on which legal action might be taken.

Of course, as you say, the process of taking legal action could be very expensive. Though there may be less expensive routes, such as "Asking a public body to review its decision". Asking for a review perhaps could be done with the aid of a petition from ME/CFS patients.


EDIT: this document details the legal requirements that must be followed by US public bodies (like the government). In particular, it states that decisions must be rational and evidence based.

I cannot see any rationality in awarding long COVID patients 15 times more funding than ME/CFS patients, when both diseases have more or less identical symptoms. Especially since ME/CFS patients have often had their illness for decades, and thus should be first in line for research funds.

However, you made me think of something - perhaps universities and ME/CFS researchers could APPLY for some of that long covid money, making the argument that ME/CFS research would benefit LC patients due to research already in place across the decades - they could come up with a good basis for this. I have no idea of the likelihood of success, though it seems this could be worth pursuing.

In some cases I think ME/CFS researchers might be able to present their research such that it appears applicable to long COVID. But in the case of drug clinical trials funded by these LC grants, for example, or tests on the blood or tissue conditions of patients, I expect those would have to be on long COVID patients, not regular ME/CFS patients.

 

[Rufous McKinney]

It feels arbitrary and capricious to fund CERTAIN diseases but not others, and not using good science to base the decision.

so I wonder if there is a government DECISION involved in this process which could be challenged?

https://clarkcountybar.org/what-does-arbitrary-or-capricious-mean/

 

[Hip]

I seeing quite a lot towards "viral persistance" for Covid 19 and thus the treatment for that is likely going to be Paxlovid or something similar, its almost certainly going to be specific to that virus.

Yes, exactly. Successful treatments for long COVID might end up being specific to the SARS-CoV-2 virus or the pathophysiology that this virus creates in the body. In which case, those treatments would not help ME/CFS associated with other viruses.

 

[Rufous McKinney]

so I wonder if there is a government DECISION involved in this process which could be challenged?

how NIH DECIDES something about GRANTS: (they use the 27 Institutes and Centers that exist) (IC)

"Each IC has a separate appropriation from Congress, and the director of each IC decides which grants it will fund, taking into consideration input from their staff, the results of the scientific peer review of the grant application, public health need, scientific opportunity, and the need to balance its scientific portfolio. NIH only funds research that has been judged highly meritorious in the peer review process."

from: https://grants.nih.gov/grants/understanding-nih.htm

 

[Rufous McKinney]

Sounds like the Peer Review Process is potentially arbitrary and capricious....since disease burden is being ignored when other Infection-related illnesses receive funding (I would not focus on Long COVID only)..and we dont' get diddly squat.