Rep. Raskin introduces ME/CFS legislation sponsored by Solve M.E.

[Emily Taylor]

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

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

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

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.

 

[Emily Taylor]

Tell Your Representative "SUPPORT INCREASED FUNDING FOR POST-VIRAL-DISEASE RESEARCH INTO ME/CFS!"
Thanks to your hard work during ME/CFS Advocacy Week, Representative Jaime Raskin (MD-08) introduced H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act.
Ask your Representative to co-sponsor H.R. 7057 today!

Last month, 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.

When passed, this legislation will bolster ME/CFS research at the National Institutes of Health (NIH) by including an additional $60 million for expanded research opportunities looking at connections between ME/CFS and COVID-19 survivors. It will also enable existing public education programs to include ME/CFS and post-viral disease information, with a focus on early diagnosis.


“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. 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.”

— Representative Jaime Raskin (MD-08)

Read more about Representative Raskin’s Legislation

Please contact your Representative TODAY and ask them to ask them to sign-on to this effort.


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[Mary]

bump

 

[sebaaa]

Guys, I really hope this gets a lot of support from the community. It's super important to show that we support this so that legislators know they can't ignore us, and this is also very important as a stepping stone for even more funding.

I asked OMF and MEAction why they're not supporting this more. I also contacted different local ME/CFS organizations to see if they could tell their members to support HR 7057:

Alabama - https://www.alabamamecfs.info/ - tina@tidcom.net
California - http://ottem.org/CCCA/ - CalCapitalCFIDS@aol.com
Colorado - https://www.rmcfa.org - link@rmcfa.org
Massachusetts - https://www.massmecfs.org/contact-us-form
Minnesota - https://www.minnesotamecfs.org/contact
New Jersey - http://www.njcfsa.org/ - helpdesk@njcfsa.org
New Jersey - bettymc28@comcast.net
North Virginia - https://cfsnova.com/index.html - CFSupport-owner@yahoogroups.com
Vermont - http://immunedysfunction.org - admin@immunedysfunction.org
Wisconsin - http://www.wicfs-me.org/ - wicfsme@yahoo.com

 

[Seven7]

I tried but nothing happened, no button or anything came up on my represetatives

 

[raghav]

What !! Why is OMF not supporting ? Are they crazy !

 

[raghav]

How many votes are needed to get it passed ? I dont know much about US legislature. So is it required to clear both houses by an absolute majority or is a simple majority sufficient ?

 

[sebaaa]

I tried but nothing happened, no button or anything came up on my represetatives

This is the email I got from them when I tried it for myself and had the same problem:

I’m sorry you are having issues with the action form! The most common problem folks run into with the form is making sure to select a "Prefix" in the drop down menu. The congressional electronic messaging system requires that "Mr. / Ms. / Dr." information before it will accept any messages.

After you've selected a prefix and completed the form, hit the green "Show Me My Officials" button and the "Send my Message" button will appear beneath the picture of your Representative.

I had issues with the form saying "there was a problem looking up your address" so I changed the address slightly to get it to work. I guess depending on what the error message is you can get a hint as to what's wrong.

What !! Why is OMF not supporting ? Are they crazy !

I asked them about it and they said that "we are promoting this and will continue to do so." I then replied and asked if they could include this on their website or tell the people in their email list to support HR 7057 but I got no reply. So I'm not exactly sure in which ways they're helping.

How many votes are needed to get it passed ? I dont know much about US legislature. So is it required to clear both houses by an absolute majority or is a simple majority sufficient ?

I'm not sure. Majority would require about 200+ representatives and I don't see this getting that much support so I doubt that majority is required. We'll be lucky to get over 50, and that's already really good.

It currently has 20 co-sponsors including a Republican one, which I think is more than last time I looked. It would be good to have the support of the long-covid community on this one...

 

[Rufous McKinney]

Below is the likely process: another bill with Senate # XXX would be developed- then they are merged.

So find your local House of Representives person (congressperson) and call their office, email or send a short note: to support the HR bill.

At some point later- we need to pressure the Senate, but not yet presumably.

How Are Laws Made?
Laws begin as ideas. First, a representative sponsors a bill. The bill is then assigned to a committee for study. If released by the committee, the bill is put on a calendar to be voted on, debated or amended. If the bill passes by simple majority (218 of 435), the bill moves to the Senate. In the Senate, the bill is assigned to another committee and, if released, debated and voted on. Again, a simple majority (51 of 100) passes the bill. Finally, a conference committee made of House and Senate members works out any differences between the House and Senate versions of the bill. The resulting bill returns to the House and Senate for final approval. The Government Printing Office prints the revised bill in a process called enrolling. The President has 10 days to sign or veto the enrolled bill.

 

[raghav]

In India when a lot of bills come up for approval by the lower house which is the most important one, the speaker takes up and reads the bill name and title and number and asks whether there is any objection. If nobody raises a voice the speaker says "The bill is passed" This is what happens with many bills which are not of major national importance. Sometimes there will be a voice vote and if the "ayes" are more than the "nays" then it is considered passed. Of course these bills have to be circulated to all the members well in advance of presenting them for voting. Then it goes to the upper house for approval. It can be returned by the upper house for reconsideration or approved straight away.

 

[Emily Taylor]

If folks still have questions about HR 7057 - I'm hosting a townhall and created a Q&A

Solve M.E. Advocacy Director Emily Taylor Answers All Your Questions About H.R. 7057 in this Q&A and Town Hall!

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.

In case you missed it:

The You + ME Registry & Biobank, a Solve ME/CFS Initiative, is an online community made up of people with ME/CFS, people with long-term symptoms of COVID-19 (“long-haulers”), and healthy control volunteers. Together, our community provides scientists with the detailed health information and biological samples needed to understand causes and develop treatments for ME/CFS and other post-viral chronic illnesses.

To learn more about how You + ME can help researchers understand the persistent symptoms experienced by COVID long-haulers join our mailing list today!

Strengthening scientific research and changing the legislative landscape to make ME/CFS widely understood, diagnosable, and treatable has been a great community effort and we’re proud and thankful to be a part of the team.Join the community effort and donate to Solve M.E. today!

 

[Gemini]

If folks still have questions about HR 7057 - I'm hosting a townhall and created a Q&A

@Emily Taylor sorry I missed your townhall.

I contacted my Representative via the Solve website, though.

Representatives Solve may also want to contact re: H. R. 7057 are:

1. Rep. Bonnie Watson Coleman co-sponsor of a State CFS Bill in the 1990's

2. Republican Rep. Chris Smith who spearheaded Lyme Disease legislation and supported past ME/CFS efforts

 

[SWAlexander]

Representative Jamie Raskin is facing a big opposition especially from the insurance companies.
What can we do to bring ME/CFS to the floor?
Emails to each State Representative?