Tell Your Representative to SUPPORT INCREASED FUNDING FOR POST-VIRAL-DISEASE RESEARCH INTO ME/CFS!

Emily Taylor

Emily Taylor

Senior Member (Voting Rights)

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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.


 
For those in the US, this is very very important and only takes a minute of your time to ask your representative to support this legislation instructing the NIH to double their research funding into ME/CFS.

This is the link to the easy to fill in form. You MUST fill in the Prefix - Mr/Mrs etc in order to find your representative.
https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00094

@Trish can you please add a note about this call to action for the Sunday news update. It's incredibly important that enough people send messages asking for support.
 
This bill probably deserves more attention and action within the ME/CFS community (I plead guilty - was busy with other things). Perhaps we could all highlight it again on social media so that ME/CFS patients in the US know about it and can contact their representatives to support the bill.

Solve ME/CFS has made it easy to contact your representative on this page: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00094

 
In addition to re-tweeting others who have mentioned this (mostly @SolveMECFS on twitter), I have written two email messages directly to my own representative since I first heard about this in June.

I've also tagged her in four separate tweets over that time.

I'm listing these ideas in case folks in the USA are looking for suggestions of what else to do if they have the energy & ability to do more than just retweet on twitter or share on Facebook.

I think my email was somewhat useful. For the first time I got a response that wasn't just boilerplate. She made no commitment to support HR 7057, but at least it wasn't the usual "we're doing all we can to fight COVID... blah blah..." It actually mentioned ME/CFS.
 


This is the actual bill.
https://www.congress.gov/bill/116th-congress/house-bill/7057/text?q={"search":["hr7057"]}&r=1&s=1

Only 12 Representatives have cosigned so far
https://www.congress.gov/bill/116th-congress/house-bill/7057/cosponsors?q={%22search%22:[%22hr7057%22]}&r=1&s=1&searchResultViewType=expanded
Cosponsor / Date Cosponsored
Rep. Payne, Donald M., Jr. [D-NJ-10] 07/20/2020
Rep. Dean, Madeleine [D-PA-4] 07/20/2020
Rep. Davis, Danny K. [D-IL-7] 07/20/2020
Rep. Wasserman Schultz, Debbie [D-FL-23] 08/07/2020
Rep. Kirkpatrick, Ann [D-AZ-2] 08/07/2020
Rep. Sablan, Gregorio Kilili Camacho [D-MP-At Large] 08/07/2020
Rep. Higgins, Brian [D-NY-26] 08/07/2020
Rep. Porter, Katie [D-CA-45] 08/07/2020
Rep. Pocan, Mark [D-WI-2] 08/07/2020
Rep. McGovern, James P. [D-MA-2] 08/07/2020
Rep. Levin, Andy [D-MI-9] 08/07/2020
Rep. Kilmer, Derek [D-WA-6] 08/07/2020
Click to expand...
 
The amount of co-sponsors is now at 20, including a republican, which is good.
Rep. Payne, Donald M., Jr. [D-NJ-10] 07/20/2020
Rep. Dean, Madeleine [D-PA-4] 07/20/2020
Rep. Davis, Danny K. [D-IL-7] 07/20/2020
Rep. Wasserman Schultz, Debbie [D-FL-23] 08/07/2020
Rep. Kirkpatrick, Ann [D-AZ-2] 08/07/2020
Rep. Sablan, Gregorio Kilili Camacho [D-MP-At Large] 08/07/2020
Rep. Higgins, Brian [D-NY-26] 08/07/2020
Rep. Porter, Katie [D-CA-45] 08/07/2020
Rep. Pocan, Mark [D-WI-2] 08/07/2020
Rep. McGovern, James P. [D-MA-2] 08/07/2020
Rep. Levin, Andy [D-MI-9] 08/07/2020
Rep. Kilmer, Derek [D-WA-6] 08/07/2020
Rep. Fitzpatrick, Brian K. [R-PA-1] 08/14/2020
Rep. Grijalva, Raul M. [D-AZ-3] 08/14/2020
Rep. Swalwell, Eric [D-CA-15] 08/14/2020
Rep. Omar, Ilhan [D-MN-5] 08/14/2020
Rep. Lynch, Stephen F. [D-MA-8] 08/14/2020
Rep. Mucarsel-Powell, Debbie [D-FL-26] 08/14/2020
Rep. Suozzi, Thomas R. [D-NY-3] 08/14/2020
Rep. Perlmutter, Ed [D-CO-7] 08/14/2020
Click to expand...

I asked OMF and MEAction if they could maybe support this more e.g. by telling everyone in their email list to support HR 7057. I emailed local ME/CFS organizations to ask if they could tell their members to support HR 7057. So far, only the Massachusetts organization replied and told me that they're supporting this. Here:
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
Click to expand...

I made a list of US representatives that have supported ME/CFS in the past:
Zoe Lofgren (D-CA)
Anna Eshoo (D-CA)
Harley Rouda (D-CA)
Gilbert Cisneros (D-CA)
Karen Bass (D-CA)
Ted Lieu (D-CA)
Judy Chu (D-CA)
Julia Brownley (D-CA)
Ro Khanna (D-CA)
Jackie Speier (D-CA)
Barbara Lee (D-CA)
Mark DeSaulnier (D-CA)
Gus Bilirakis (R-FL)
Darren Soto (D-FL)
David Joyce (R-OH)
Debbie Lesko (R-AZ)
Joe Neguse (D-CO)
David Schweikert (R-AZ)
Greg Stanton (D-AZ)
Jack Bergman (R, MI-1)
Ron Wright (R-TX)
Robert Scott (D-VA)
Peter Welch (D-VT)
Adam Smith (D-WA)
Suzanne Bonamici (D-OR)
Peter Defazio (D-OR)
Steve Cohen (D-TN)
Angie Craig (D-MN)
Elissa Slotkin (D-MI)
Chellie Pingree (D-ME)
David Trone (D-MD)
C.A. Dutch Ruppersberger (D-MD)
William Keating (D-MA)
Ayanna Pressley (D-MA)
Seth Moulton (D-MA)
Joseph P. Kennedy (D-MA)
Andre Carson (D-IN)
Janice Schakowsky (D-IL)
Bobby Rush (D-IL)
Tulsi Gabbard (D-HI)
Lucy McBath (D-GA)
Lisa Blunt Rochester (D-DE)
Eleanor Holmes Norton (D-DC)
Jason Crow (D-CO)
Diana Degette (D-CO)
Tom O'Halleran (D-AZ)
Click to expand...
Naturally, these are the easiest targets and should be the first ones that the relevant ME/CFS organizations contact for support. There's absolutely NO reason why they wouldn't support HR 7057 now, and why the amount of co-sponsors shouldn't grow to 50+. They should be reminded that they supported ME/CFS in the past. Share this if you want to...

It would be good to have the support of the long-covid community on this one.
 
sebaaa said:
The amount of co-sponsors is now at 20, including a republican, which is good.


I asked OMF and MEAction if they could maybe support this more e.g. by telling everyone in their email list to support HR 7057. I emailed local ME/CFS organizations to ask if they could tell their members to support HR 7057. So far, only the Massachusetts organization replied and told me that they're supporting this. Here:


I made a list of US representatives that have supported ME/CFS in the past:

Naturally, these are the easiest targets and should be the first ones that the relevant ME/CFS organizations contact for support. There's absolutely NO reason why they wouldn't support HR 7057 now, and why the amount of co-sponsors shouldn't grow to 50+. They should be reminded that they supported ME/CFS in the past. Share this if you want to...

It would be good to have the support of the long-covid community on this one.
Click to expand...
So it looks like this is a general oversight by everyone, rather than one charity in particular. My guess is that if Janet doesn't know what it's about, maybe the others don't either?
 
sebaaa said:
Naturally, these are the easiest targets and should be the first ones that the relevant ME/CFS organizations contact for support. There's absolutely NO reason why they wouldn't support HR 7057 now, and why the amount of co-sponsors shouldn't grow to 50+. They should be reminded that they supported ME/CFS in the past. Share this if you want to...
Click to expand...
Thanks for your efforts @sebaaa

The US is a mess right now. COVID-19 here is awful.There is political fighting over the COVID relief bills and everything is stalled. The Democratic Convention is currently on. California is burning with 350+ fires. Ohio had devastating tornadoes. Very few representatives and their staff are listening to us due to everything going on unfortunately.

Anna Eshoo who is on your list of past supporters is 110% focused on trying to stop the dismantling of the US Postal Service. I'm afraid it's really hard to get our representatives attention right now unfortunately.
https://paloaltoonline.com/news/202...ogress-eshoo-shows-support-for-postal-service
 
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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!
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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:
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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!
 
On Thursday, Sept. 24, I started making daily calls to my congressional representative to ask her to support HR 7057. Her office is closed, but the message says they check voicemail. So I've been leaving messages every day.

In the past, I've emailed her office about this every very week or two. And I've tagged her on twitter many times. But she has never committed to being a co-sponsor of this bill.

The current list of co-sponsors (I'm not sure how often this list is updated) can be seen here:

https://www.congress.gov/bill/116th...7057/cosponsors?searchResultViewType=expanded

Anyway, last week I decided to take the advice of someone who posted on twitter (sorry, forgot who it was!) saying that phone calls might get more attention. They said that calling every day was a strategy that worked for them.

Now I'm calling and tweeting every day. I missed one day because I was feeling too sick but I had my husband call that day.

Today is day 8 of calling - here's the tweet I just pinned to my profile:

Day 8 call to Bonamici HR 7057.png
Code: 
https://twitter.com/ahimsa_pdx/status/1311790469945282560
I'm posting here to invite others in the USA who live in some other congressional district, one where the representative has not yet co-sponsored this bill, to consider making phone calls (not necessarily every day).

The Solve ME/CFS group has a template at https://solvecfs.org/hr7057actioncenter/ that you can follow if you don't know what to say:
https://solvecfs.org/hr7057actioncenter/ said:
Hello. My name is __________ and I am calling from zip code __________. I am calling to ask my Representative to co-sponsor H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act. It is extremely important for Congress to fund research at the NIH to understand the long term impacts of COVID-19. Some people with COVID-19 are not recovering and some people with COVID-19 have been diagnosed with ME/CFS. We must act NOW to address the predicted rise of ME/CFS cases due to COVID-19. Please co-sponsor HR 7057 today.
Click to expand...
 
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I checked the number of co-sponsors for HR 7057 yesterday and saw that the number had been updated to 43! :)

It looks like 11 names were added showing a co-sponsor date of Oct. 1:

https://www.congress.gov/bill/116th...ponsors?r=7&s=1&searchResultViewType=expanded

I just thought I'd post an update here to maybe encourage folks who are contacting their representatives - some progress is happening.

Is anyone else on the forum who is contacting (email/phone/text/paper mail?) their representative to ask them to sign on to this bill? I'd love to know!

My congressional representative is Suzanne Bonamici, First District of Oregon (Oregon currently has 5 districts).
 
Update from a Solve email.
>>>>>

Advocate for People with ME/CFS Today!

You don’t have to wait until April to take our fight to Washington, D.C. You can get involved today by helping pass H.R. 7057!

Rep. Jamie Raskin’s landmark legislation, H.R. 7057, The Understanding COVID-19 and ME/CFS Subsets Act, will be the first piece of legislation to authorize funding from the National Institutes of Health (NIH) for ME/CFS research and education.

As of October 1, H.R. 7057 has an impressive 47 co-sponsors!

To read the bill in its entirety and see a full listing of co-sponsors, visit this link.

Visit this link to find a series of action items—we’ve even organized them by time and energy level so you can choose the action that works for you.

You can take action via emails or calls to your representatives, social media posts, or a combination! We packed this action kit with pre-written language and talking points to help make your advocacy efforts as easy and productive as possible.

Get Started Today!
 
I got an email from my congress representative this morning.

She is now a co-sponsor of HR 7057!:party::balloons:
Email from Rep. Bonamici said:
November 13, 2020

Dear Ms XXXXXXXXXX,

Thank you for contacting me about H.R. 7057, the Understanding COVID-19 Subsets and ME/CFS Act. I appreciate hearing from you.

Fighting the coronavirus (COVID-19) in Oregon and across the country has required swift action and all of us working together. Congress has passed several bills to safeguard public health and bolster the economic security of our communities during this pandemic; however, there is still much more work to be done. This pandemic also is a reminder that we need to reinvest in our public health infrastructure.

Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome, or ME/CFS is a disorder characterized by extreme fatigue. According to the U.S. Centers for Disease Control and Prevention (CDC) more than one million adults have been diagnosed with the disorder.

I am a cosponsor of this bill, which would amend the Public Health Service Act to direct the National Institutes of Health (NIH) to conduct and support research on the diagnosis, treatment, and risk factors of post-viral chronic neuroimmune diseases, specifically ME/CFS, COVID–19 patients exhibiting ME/CFS symptoms, and survivors of COVID–19 with ME/CFS. The bill also authorizes $15 million to support this expanded research program and allows the Secretary of Health and Human Services to conduct a public awareness campaign regarding ME/CFS. In the House, this bill falls under the jurisdiction of the Energy and Commerce Committee. Although I am not a member of that committee, I will follow the progress of the bill and look forward to supporting it should it come before the full House of Representatives for a vote.

We cannot get over this virus until we drastically increase our public health efforts. As Congress continues to work toward bolstering our national economy and considers further legislation, please know that I will continue to do all I can to fight for the resources you and all Oregonians need right now.

Thank you again for writing to me. If you would like to know more about my work in Congress, please sign up for my newsletter at http://bonamici.house.gov or visit my Facebook page at http://www.facebook.com/CongresswomanBonamici.

Sincerely,

Suzanne Bonamici
Member of Congress
Click to expand...

(I do wish folks would stop using this incorrect boilerplate line describing ME/CFS: "Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome, or ME/CFS is a disorder characterized by extreme fatigue."o_O:mad:)

The current number of co-sponsors is now 51:

https://www.congress.gov/bill/116th...ponsors?r=7&s=1&searchResultViewType=expanded
 
"URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS!
We need YOU to contact your Senators. Your voice makes all the difference.

Our champion, Senator Markey, is leading two requests which, if approved, can increase funding for ME/CFS research and education! These requests would bring the total ME/CFS program funding level at CDC to $15.4 million (a 300% increase in program related funding!) and ensure ME/CFS continues in the critical Department of Defense Peer-Reviewed Medical Research Program, which provided over $500,000 to ME/CFS researchers last year.

Please contact your Senators ASAP and ask them to support these efforts."

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00143
 
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