COVID-19 Long Haulers Act (& ME/CFS research $?) introduced

[Roy S]

Bipartisan Long Hauler Legislation
Introduced Before Congress!

Thanks to your dedication and advocacy efforts, the COVID-19 Long Haulers Act (H.R. 2754) was formally introduced before Congress!

The legislation was first announced during Advocacy Week by Representatives Don Beyer (D-VA) and Jack Bergman (R-MI) at a bipartisan press conference hosted by Solve M.E. We feel this bill is the best opportunity for ME/CFS in decades. It contains provisions that will benefit people with ME/CFS specifically, and also applies to the broader community who suffer from post-viral illness.

Solve M.E. and members of the Long COVID Alliance worked closely with Representative Beyer’s office to help craft data-driven policy solutions that meet the diverse needs of ALL long haulers and post-infectious illness patients.

The bill contains many provisions that will benefit people with ME/CFS, such as nationwide medical education (with ME/CFS specifically identified), expanding prevalence tracking (with ME/CFS included), and research about access to post-viral care and diagnostics (which applies to everyone with post-viral illness).

“We are incredibly honored and proud to have the support of Rep. Don Beyer and Rep. Jack Bergman to not only help us raise awareness of ME/CFS, but for their clear understanding that it is critical to attain much-needed funding and policy solutions,” said Solve M.E. CEO Oved Amitay. “Already, approximately 2.5 million Americans are afflicted with ME/CFS and COVID-19 is on target to double that number. Funding for education, research and treatment surrounding Long COVID and associated post-viral diseases like ME/CFS is not an option, it’s non-negotiable. The health of our nation depends on it.”

To read the bill text in its entirety, click here.

 

[Roy S]

Based on my experience starting three decades ago as one of the few ME/CFS lobbyists, this looks good. I wish I was still able to be involved in it.

We will eventually see if it helps us.

A lot of efforts went into this and it is greatly appreciated.

If I have this right-

There was a hearing on this approximately 1.15 billion dolllars ($1,150,000,000.00) long covid / post acute covid19 money.

I listened to much of it but the audio was poor for some people. There were many mentions of ME by various terms.

Hearing on "The Long Haul: Forging a Path through the Lingering Effects of COVID-19" | Democrats, Energy and Commerce Committee (house.gov)

This is the lobbyist that Solve ME/CFS Initiative has retained. There are a lot of misconceptions about lobbying the federal government. It is essential to have people who know what to do.

Stuart Chapman - Thorn Run Partners

Solve ME/CFS Initiative Lobbying Profile • OpenSecrets

It also helps to have motivated people in high places-

Solve ME/CFS Initiative on Twitter: "We are saddened #LongCOVID is impacting the son of @ASlavitt, White House COVID-19 Response Team Senior Adviser — esp. as more & more young people are hit by the debilitating & lasting effects of #COVID19. Slavitt shares his family's experiences here: https://t.co/SZ9yrvcMbL" / Twitter

MEAction also sent a letter to the committee.

#MEAction urges Congress to hold NIH accountable - #MEAction Network

 

[PisForPerseverance]

Wow. Thank you for all you've done before. The fact that you think this is good after three decades lobbying says a lot.

research about access to post-viral care and diagnostics (which applies to everyone with post-viral illness).

Why is it just research about access to post viral care? When there is very limited or zero protocols and reliable treatments for that post viral care? Why not research on developing that actual care? Can you shed some light on this?

 

[Alvin2]

Very nice!
How much would specifically go to ME/CFS?

 

[Roy S]

Sorry, I don't know all the details and I don't have the mental stamina now to learn too much more.

The bill has only been introduced so far. It may change.

I am not aware of any specific figures on how much will be spent on ME/CFS

It can be read here. I have not read it all.

C:\Users\alschilt\AppData\Roaming\SoftQuad\XMetaL\11.0\gen\c\BEYER_~1.XML (solvecfs.org)

This is an earlier NIH announcement.

NIH launches new initiative to study “Long COVID” | National Institutes of Health (NIH)

I like that there are people following up on this that are aware of the history of broken promises by the NIH. We will see...

 

[Roy S]

This is from 5/20/21.

Drs. Anthony Fauci and Walter Koroshetz on the Turning Point... : Neurology Today (lww.com)

What is post-acute sequelae of COVID-19, or PASC, and how is it different from other post-viral syndromes like chronic fatigue syndrome?

Dr. Koroshetz: We know very little about the biological underpinnings of what people are suffering with. But we do know, unfortunately, it's not a minor problem. The percentage of people could be below 10 percent, but given the fact that so many have been infected, that's still going to be a lot of people. We also know now that the hope that this might be something like infectious mononucleosis, that it might take six months and then you'll be fine—there's certainly evidence now that for some people that's not happening, that some still have problems past six months.

The most prominent symptom of the PASC is fatigue, along with memory and attention problems. Other symptoms include dysautonomia, postural orthostatic tachycardia, pain syndromes, abnormal sensations, and sleep disturbances.

Neurologists must play a really important role in getting to the bottom of this problem. Dr. Fauci and I have been asked by [NIH Director] Dr. Francis Collins to really push on chronic fatigue syndrome [CFS]. There are incredible parallels between the cluster of symptoms seen in those two conditions, and we've never been able to figure that one out. The CFS is a real mystery. But in that case, we never knew what the virus was. A lot of people said they had a viral illness, and then they had this trouble. Now, with PASC, we know what virus they had and when they had it. We can try to trace the biology, hopefully, get some clues to help us understand and treat patients with post-acute COVID-19, and potentially even for the tens of thousands with CFS.

Dr. Fauci: We've been chasing myalgic encephalomyelitis without knowing what the etiologic agent was. Now, we have an absolutely identified etiologic agent. That should be very helpful now in being able to help us understand it. I hope we do. It's been mysterious to us for years. Maybe this will give us a chance at a breakthrough."

Dr. Avindra Nath at NINDS, who has been working on ME/CFS, is also working on post-acute COVID-19.

Avindra Nath - MEpedia (me-pedia.org)

 

[Rufous McKinney]

This is from 5/20/21.

It took them THIS LONG.......?

 

[Roy S]

It took them THIS LONG.......?

9 days ago

 

[Rufous McKinney]

9 days ago

sorry- I was more referring to the vague responses about what a mystery CFS is (was).

58 years of chronic "something epstein barr" made not a hill of beans difference to these people. oh NOW we have a virus to study?

 

[Roy S]

sorry- I was more referring to the vague responses about what a mystery CFS is (was).

58 years of chronic "something epstein barr" made not a hill of beans difference to these people. oh NOW we have a virus to study?

I agree.

 

[Alvin2]

Dr. Fauci: We've been chasing myalgic encephalomyelitis without knowing what the etiologic agent was. Now, we have an absolutely identified etiologic agent. That should be very helpful now in being able to help us understand it. I hope we do. It's been mysterious to us for years. Maybe this will give us a chance at a breakthrough."

This sounds like he thinks they are the same thing so study covid and also understand ME/CFS.
Possible but not worth gambling lives on since we have the ability (but not money) to research both.

Frankly i am not confident more then a dollar will flow to ME/CFS research from this. I implore them to prove me wrong.

 

[Cinders66]

This sounds like he thinks they are the same thing so study covid and also understand ME/CFS.
Possible but not worth gambling lives on since we have the ability (but not money) to research both.

Frankly i am not confident more then a dollar will flow to ME/CFS research from this. I implore them to prove me wrong.

I also think Its A gamble. Many assert we simply don’t know if they’re going to be the same underneath. I think it would be unwise to just sit back and say ah well the money is going in some vague post viral/ overlap direction,we can just leave ME. Unfortunately I think that the mindset seems exactly That in the NIH from this and other interviews
The message is still well ofcourse we can’t really do more for ME and why would we anyway when we are studying longcovid But look , they're getting billions so chin up...

Some patients and some orgs in the UK also.

In the UK people with ME are not being included in any longcovid research, so at best the scenario is do lots of basic exploratory research on longcovid Of the type not done in ME, have some eureka moments and *then* try to replicate it in ME. At worst the “PVFS” money mainly goes to lOMG covid, it has some persistent virus or vascular factor distinct from ME And ME is still unresearched. Although perhaps that’s less likely?

 

[Breagjam]

Based on my experience starting three decades ago as one of the few ME/CFS lobbyists, this looks good. I wish I was still able to be involved in it.

We will eventually see if it helps us.

A lot of efforts went into this and it is greatly appreciated.

If I have this right-

There was a hearing on this approximately 1.15 billion dolllars ($1,150,000,000.00) long covid / post acute covid19 money.

I listened to much of it but the audio was poor for some people. There were many mentions of ME by various terms.

Hearing on "The Long Haul: Forging a Path through the Lingering Effects of COVID-19" | Democrats, Energy and Commerce Committee (house.gov)

This is the lobbyist that Solve ME/CFS Initiative has retained. There are a lot of misconceptions about lobbying the federal government. It is essential to have people who know what to do.

Stuart Chapman - Thorn Run Partners

Solve ME/CFS Initiative Lobbying Profile • OpenSecrets

It also helps to have motivated people in high places-

Solve ME/CFS Initiative on Twitter: "We are saddened #LongCOVID is impacting the son of @ASlavitt, White House COVID-19 Response Team Senior Adviser — esp. as more & more young people are hit by the debilitating & lasting effects of #COVID19. Slavitt shares his family's experiences here: https://t.co/SZ9yrvcMbL" / Twitter

MEAction also sent a letter to the committee.

#MEAction urges Congress to hold NIH accountable - #MEAction Network

Does anyone know if MEAction received a response to this letter they sent to the Energy and Commerce Committee? I have asked a couple times but not gotten a response.

 

[Pyrrhus]

Solve ME is asking U.S. residents to contact their representative to push this bill forward:

Quick HR 2754 (COVID-19 Long Haulers Act) Tool
https://forums.phoenixrising.me/threads/quick-hr-2754-covid-19-long-haulers-act-tool.84870/

 

[Alvin2]

Solve ME is asking U.S. residents to contact their representative to push this bill forward:

Quick HR 2754 (COVID-19 Long Haulers Act) Tool
https://forums.phoenixrising.me/threads/quick-hr-2754-covid-19-long-haulers-act-tool.84870/

Does it specifically have ME/CFS research money or is it assumed covid research will help us as well?

 

[Marylib]

Does anyone know what is going on with the CDC Draft Guidelines for ME/CFS? As opposed to Long Covid. ME Action is talking about one thing, but Solve ME is focused on Long Covid..??

 

[Breagjam]

On the MEAction site a couple of weeks ago, I asked a question in response to an article they posted about CDC releases flawed review for public comment, and they responded with the below answer.

“The immediate thing #MEAction is preparing is an official public comment response to this CDC evidence review. CDC is required to follow this public input process and we intend to make full use of it as advocates have done with the previous 2014 public comment period on the AHRQ evidence review. We will continue to use advocacy and activism tools to press the CDC. Now is the time to use the public comment process to our advantage to communicate how upset we are with CDC.”

Does anyone think it would be more strategic of the advocacy groups to join forces to potentially become one stronger, larger entity - with hopefully a louder voice? I think that’s really needed at this point, along with forming a legal strategy.

 

[Rufous McKinney]

more strategic of the advocacy groups to join forces to potentially become one stronger, larger entity -

but who/what other groups would that be?

 

[Breagjam]

MEAction & SolveME - at least for a combined US advocacy group. Not sure of any other “large” groups that exist in US…..just an idea!

 

[Pyrrhus]

Does anyone think it would be more strategic of the advocacy groups to join forces to potentially become one stronger, larger entity - with hopefully a louder voice?

I believe someone raised that idea on social media and the response was that Solve ME and ME Action are indeed coordinating in some ways, but each organization has different strengths and they are dividing advocacy efforts according to their individual strengths. I may have misunderstood, however.