USA: Rep. Jamie Raskin introduces legislation to address potential rise in ME/CFS from COVID-19 pandemic

ahimsa

ahimsa

Senior Member (Voting Rights)
Raskin Introduces Legislation to Address America’s Hidden Health Crisis

raskin.house.gov press release said:
CDC labels chronic fatigue syndrome “America’s hidden health crisis” as 90 percent of patients remain undiagnosed

Congressman Jamie Raskin (MD-08) today introduced legislation that would expand and coordinate National Institutes of Health (NIH) funding to address post-viral chronic neuroimmune diseases, including chronic fatigue syndrome (ME/CFS) in the wake of the COVID-19 pandemic. As Congress continues its response to the coronavirus, the Understanding COVID–19 Subsets and ME/CFS Act, H.R. 7057, will address the predicted rise in ME/CFS diagnoses linked to increasing COVID-19 cases across the country.

When a severe infection like the coronavirus sweeps through the population, ME/CFS often follows. This legislation would allow the NIH to support research and data collection on diseases like ME/CFS in order to understand how best to diagnose and treat those who are infected, as well as to assess possible risk factors. It would additionally provide for public awareness and education campaigns to increase our understanding of the disease, with an emphasis on early diagnosis.

“While we are facing a monumentally dangerous public health crisis, we must take all necessary steps not only to stem the spread of COVID-19, but also to prevent and control its lasting repercussions.” said Rep. Raskin. “We cannot let the number of ME/CFS cases rise due to a lack of research and understanding. As we battle the coronavirus, this critical legislation will help us respond to this ME/CFS hidden health crisis.”

Rep. Raskin’s legislation is endorsed by the Solve ME/CFS Initiative.
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That's great! I hope it passes and that something similar will happen in the EU.

If I read this correctly, I think it will allow "$15,00,000 [in funding] for each of fiscal years 2020 through 2024." I'm guessing the lack of a zero is a typo.
 
Do we get a free sub when we reach the count of 12 resolutions directing the NIH to do their job?

Feels like we're getting pretty close to that count. And wasn't there a resolution that passed months ago directing the NIH to formulate a strategic plan within 90 days, which have since passed?

It would be kind of convenient to bring out when Collins' testimony about COVID-19 was interrupted and he pretended he would say something about it and never bothered again.


People: Hey, NIH, do something.

NIH: Sure, will do, no hope without action, we take your call very seriously.

Also NIH: does nothing

People: Hey, NIH, do something

NIH: Sure, will do, no hope without action, we take your call very seriously.

Also NIH: does nothing

...
 
Hutan said:
The bill's words are great.

View attachment 11134
That is an unfortunate typo.

Does anyone know what the chances are of the bill passing?
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The political situation in the US is not particularly conducive right now. But appropriations generally flow through as priority when budgets are due, so it's a question of when Congress resumes normal business. Right now there is a standoff between the two chambers as the senate refuses to take legislation from the opposing party and focuses mostly on confirming judges.

Which is to say it's impossible to predict, especially with DC being on actual lockdown. Though at least the military has been forced to retreat, federalism sometimes kinda works.
 
Hi all -

Just noting that the version of the bill that Raskin posted was the draft. It doesn't have a bill number. There were a number of technical corrections before the actual introduction

Rep. Raskin (MD-08) Introduces First Ever Legislation for ME/CFS Research Funding!
Solve M.E. is proud to endorse H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act, to authorize a $60m program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical education ME/CFS initiatives
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Representative Jamie Raskin (MD-08) meeting with ME/CFS Advocates as part of Solve M.E. Advocacy Day 2018

This week, longtime ME/CFS champion Representative Jaime Raskin of Maryland’s 8th Congressional district introduced landmark legislation for ME/CFS research. H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act, authorizes $60 million over the next four years to expand NIH research into post-viral ME/CFS and also empowers the Department of Health and Human Services (HHS) to provide for public awareness and education campaigns to increase understanding of ME/CFS, with an emphasis on early diagnosis. Additionally, the legislation includes mandatory reports to Congress on the progress of implementing the expanded research program.

“We cannot let the number of ME/CFS cases rise due to a lack of research and understanding. As we battle the coronavirus, this critical legislation will help us respond to this ME/CFS hidden health crisis.”said Rep. Raskin.“While we are facing a monumentally dangerous public health crisis, we must take all necessary steps not only to stem the spread of COVID-19, but also to prevent and control its lasting repercussions.”

Read more about Representative Raskin’s Legislation


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Senator Ed Markey (MA) meeting with Solve M.E. and Massachussetts ME/CFS & FM Association in 2017

This legislation follows last month’s Senate Leadership letter by Senator Ed Markey of Massachusetts with a matching proposal calling on Senate Leadership to prioritize medical research funding ME/CFS in any upcoming coronavirus relief package.

“Congress must take the necessary steps to maximize the ability to properly diagnose and treat post-COVID-19 patients with ME/CFS-like symptoms and ensure these patients are not left behind,” write the Senators in their letter to Senate Majority Leader Mitch McConell and Senate Minority Leader Charles Schumer. “Strengthening the existing research infrastructure for ME/CFS will equip our nation with the resources necessary to improve the overall health of our nation moving forward.”

Read more about Senator Markey’s letter



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Thanks to your hard work in our largest ME/CFS Advocacy Day ever, Solve M.E. worked closely with both Senator Markey and Representative Raskin to draft vital NIH programming priorities to meet needs of the ME/CFS field including:
  • New ME/CFS disease-specific funding announcements to deliver needed diagnostics and treatments faster
  • An initiative to reach consensus on the ME/CFS case definition
  • Mechanisms to incentivize new and early career researchers to enter the field
  • Data Collection including epidemiological information, natural history, risk factors, comorbid conditions, and the availability of medical services for individuals with ME/CFS and their families
  • Establishing new and expanding existing Collaborative Research Centers
  • Developing a research agenda in collaboration with interagency partners, stakeholders and disease experts
  • Expanding public and medical education initiatives focusing on early diagnosis and appropriate treatment recommendations
Stay tuned for more updates on this historic effort and ways you can take action! Feel free to thank Senator Markey (@SenMarkey) or Representative Raskin (@RepRaskin) on social media.
 
Senator Ed Markey held a Facebook Live on Thursday 23rd July 2020 in support of this Legislation with ME advocates.
These were the participants


It can be re-watched in the following link. Duration is 36mins starting at 2m30s.
Code: 
https://www.facebook.com/303167829786891/videos/231953637824052/


Also on YouTube
Code: 
https://youtu.be/hlAjCg1DOLw
 
News coverage
Senator Ed Markey, health advocates discuss Covid-19 and chronic fatigue syndrome
A livestream led by Senator Ed Markey and health rights advocates discussed the possible links of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or ME/CFS to viral illnesses like COVID-19.
 
Rivka Solomon: ‘I have an advocate in Ed Markey’
During a 2017 town hall in Northampton, Sen. Ed Markey said to me: “I will be your advocate.” And he has not wavered since.

I am one of the millions of Americans disabled due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a serious yet neglected disease that is in desperate need of funding for medical research. This systematic disease is frequently triggered by a virus. For me, it was mononucleosis from the Epstein-Barr Virus when I was in college. Now, decades later, I am still so sick I’m often bedridden.

Sen. Markey has not left me, nor the up to 2.5 million Americans suffering from ME/CFS, behind. When few else on Capitol Hill would listen, Markey stood up and fought for us through appropriations requests, bipartisan Senate resolutions, and letters to federal health agencies.
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https://www.gazettenet.com/Letter-Rivka-Solomon-35336458
 
From a Solve email.

Hi Solve M.E. Community!

In case we haven’t met before, my name is Emily Taylor, and I’m the Director of Advocacy and Community Relations at Solve M.E. Over the last few weeks, I’ve received dozens of emails from you asking questions about the historic legislation we’ve endorsed. We are thrilled with the engagement you’ve demonstrated with H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act, which will be the first piece of legislation to authorize funding from the National Institutes of Health for ME/CFS research.

Our CEO, Oved Amitay, has best described this critical timing:

“With so many unknowns still surrounding the long-term effects of COVID-19, researching any potential patterns that may be surfacing is crucial. Given the emerging relationship between COVID-19 and post-viral fatiguing diseases, especially ME/CFS, the time to invest in researching potential links is now.”

To answer your questions, I’ve written a Q&A post that you can find on our website. In it, you’ll find answers to your most pressing questions, including: What is H.R. 7057? What will this legislation accomplish? How will it affect the field of ME/CFS research?

If you still have questions, we’ll also be hosting a town hall (I’m calling it a “Legislative Cafe Chat”) on Wednesday, September 9th at 2:30PM PT / 5:30PM ET. Join us for a cup of tea and a virtual conversation about H.R. 7057.

To RSVP, please send an email to jbrownclark@solvecfs.org.

Additional Resources:
  • To read our announcement of H.R. 7057, visit this page.
  • Find the full bill text here.
  • Ask your Representative to co-sponsor H.R. 7057 today! Click our action link to ask them to join our efforts.
 
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