2021 Advocacy Week Report: Our Biggest Ever — You Made It Happen!

May 12, 2021

The 5th Annual ME/CFS Advocacy Week hosted by the Solve ME/CFS Initiative (Solve M.E.). Advocacy Week took place from Sunday, April 18, 2021 to Saturday, April 24, 2021. This year, “ME/CFS & Long COVID Advocacy Day” welcomed our new partners from the Long COVID Alliance and the EveryLife Foundation for Rare Diseases to participate FROM HOME in nearly two weeks of exciting virtual events.

Our success in review:

Who Participated

In 2021, Solve M.E. expanded our annual advocacy events in order to bring together advocates from many complex chronic illness communities, including: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), just to name a few. This year, the Rare Disease Legislative Advocates (a project of the Everylife Foundation for Rare Diseases) also supported these efforts, bringing the perspective of patients who had been diagnosed with both a rare disease and ME/CFS. We were also joined by the Long COVID Alliance, who leveraged their collective knowledge and resources to help educate policymakers about the challenges faced COVID Longhaulers and post-COVID ME/CFS patients.

The issues brought to the forefront by Long COVID have a direct impact on our communities. This is why it is important that we came together to amplify our voices on Capitol Hill.

We had the biggest turnout EVER for our Advocacy Week events this year. Nearly 1,000 people registered to participate in 334 meetings — that’s over 60% of congress in a single day! Together, we demanded improved funding for research infrastructure and medical education for ME/CFS, Long COVID, and other post-viral illnesses. This is more than DOUBLE the number of attendees from 2020. Forty-nine of these meetings were member-level, meaning our advocates spoke directly with the senators and representatives who have the power to change our lives when they vote on legislation like the soon-to-be-introduced COVID-19 Longhaulers Act.

We’re thrilled that over 65% of those advocates said it was the first time they have ever called or spoke to a congressional office. Energizing and training new advocates to take part in our growing efforts for ME/CFS advocacy is a key goal!

What Happened

People from around the world attended 12 different virtual events, which included remarks from three members of congress, prominent patient advocates, researchers, and Solve M.E. leaders. Check out these highlights!

Tuesday April 13: Congressional Meeting Training

This annual training welcomed over 500 new advocates and veterans alike. Solve M.E. Director of Advocacy and Community Relations Emily Taylor led this special training session that outlined best practices for congressional meetings for Advocacy Day 2021. These are a great resource if you’d like to sharpen your advocacy skills.

Check out these shorter videos of the training session, divided into three parts at the links below:

  1. Solve M.E. Advocacy Day Congressional Meeting Training: Your Meetings
  2. Solve M.E. Advocacy Day Congressional Meeting Training: Your Tools
  3. Solve M.E. Advocacy Day Congressional Meeting Training: Your Talking Points**

** check out this video for a discussion of the COVID-19 Longhaulers Act

View the slide deck for this presentation here.

 

April 14 – April 15: Advocacy Day Office Hours

Event organizers were available for six hours of 1-on-1 zoom support for all participants to ask questions and get individualized support. Over 100 advocates took advantage of this unique opportunity to get hands-on support with story crafting, messaging for specific offices, and behind-the-scenes details of the legislation, appropriations, and committee report language.

April 16: Advocates Social Happy Hour

Just because we weren’t able to join together in-person for Advocacy Week, doesn’t mean we have to be apart. This special Advocates Social Happy Hour honored two very special advocates, Joe Lane and Michelle Roy, with a surprise award for being 5-year Advocacy Day Champions! This event also featured a disability and virus trivia and prizes!

 

April 19: Advocacy Day Welcome and Virtual Keynote Address

On Monday, April 19, at 10 am PT/ 1 PM ET, Solve M.E. hosted a virtual keynote address with a special appearance by our ME/CFS community champion, Representative Jamie Raskin (MD-08).

In 2020, Rep. Raskin introduced H.R. 7057, The Understanding COVID-19 and ME/CFS Subsets Act, the first piece of legislation to authorize funding from the National Institutes of Health (NIH) for ME/CFS research and education.

Rep. Raskin was joined at the event by Maryland Secretary of Aging and Solve M.E. Board Member Rona Kramer, disabled registered nurse and patient expert Ashanti Daniel, BSN, RN, and Sarah Bekins Tompkins, Rare Disease Legislative Advocates (RDLA) Advisory Committee Member and EDS patient advocate.

Watch the full event recording here!

April 20: Advocacy Day!

The keystone event of the week was ADVOCACY DAY, on Tuesday April 20. This VIRTUAL event connected nearly 1,000 registered advocates, directly with their members of Congress, including 49 meetings directly with members. Our organizers provided streamlined meeting tools to connect volunteers to congressional offices with personalized zoom and phone conversations. Using cutting edge online tools (pictured above) our participants had easy access to their schedule, their talking points, all reference documents, reporting tools, social media tools, instant messaging system, and full congressional bios and contact information.

 

April 21: Bipartisan Press Conference and Social Media Day

On Wednesday, April 21 Rep. Don Beyer (D-VA) and Rep. Jack Bergman (R-MI) led a special bi-partisan announcement of the COVID-19 Longhauler Act.

With over 150 in attendance, this virtual press conference brought ME/CFS and Long COVID into the media spotlight.

Watch the full event recording here!

 

Plus, social media was buzzing with posts and tweets using #StoptheLonghaul and #TrustPatients. In just THREE days, these online activities yielded:

  • 857 mentions (including 4 by accounts belonging to members of Congress!)
  • 13,100 interactions
  • 1,353,200 reach
  • 10,200 shares
  • 2,857 likes

You can still take action to support our efforts by using our REMOTE ACTION KIT to email, post or tweet with easy online tools.

 

April 22 – 23: 3rd Annual EmPOWER M.E. Roundtable: Elevating Your Voice in Research

The 3rd Annual EmPOWER M.E. Roundtable took place on Thursday April 22 at 10 am PT/ 1 pm ET. This interactive online education workshop focused on elevating the patient voice (your voice!) in research.

In this hour-long virtual roundtable, patient advocates and citizen scientists shared their experiences in navigating the world of research and clinical studies and how to make your voice heard at every level of research. Participants learned how to overcome barriers to equitable access and get involved in quality research opportunities. This panel also included a preview of the latest ME/CFS and Long COVID data and insights from the patient-centered You + ME Registry and Biobank, the latest work from the Patient-Centered Research Collaborative and a report about the real cost of rare disease in America.

The event also featured special guest and keynote remarks from Representative Don Beyer, co-author of the COVID-19 Longhauler Act.

Watch the full event recording here!

 

We’re already getting results!

Thanks to your dedication and advocacy efforts, the COVID-19 Long Haulers Act (H.R. 2754) was formally introduced before Congress. 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., this bill is the best opportunity for ME/CFS in decades. 

The bill contains 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).

53 Representatives Signed onto our Requests for $15.4 million for ME/CFS and Peer-Reviewed Medical Research

A key goal of Advocacy Day was to circulate Chairwoman Eshoo and Representative Lofgren’s “e-Dear Colleague” letter, requesting an additional $10 million for the chronic fatigue syndrome program at the Centers for Disease Control (CDC). Advocates who met with members of the relevant House and Senate Appropriations subcommittees also received special customized talking points to educate subcommittee decision makers about the value of this urgently needed increase.

Thanks to record breaking participation in ME/CFS Advocacy Week, we secured 53 bipartisan supporters for our FY22 appropriations requests, that’s the most signers on any ME/CFS appropriations letter in history!

If successful, these requests will 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.

FY 2022 ME/CFS Defense Request letter

FY 2022 ME/CFS LHHS Request letter

Check out the list of Representatives who supported ME/CFS this year. If your Representative signed on to support ME/CFS, consider using our TWEET AT CONGRESS tool and sharing your thanks!

Sample tweet:

Thank you for supporting #MECFS funding requests for next year! So proud to be represented by @RepNAME @PlzSolveCFS @Long_COVID_All #TrustPatients

Letter leaders:

  1. Representative Zoe Lofgren — @RepZoeLofgren
  2. Representative Anna Eshoo — @RepAnnaEshoo

Letter signers:

  1. REP. CINDY AXNE — @RepCindyAxne
  2. REP. KAREN BASS — @RepKarenBass
  3. REP. SUZANNE BONAMICI — @RepBonamici
  4. REP. JULIA BROWNLEY — @RepBrownley
  5. REP. CAROLYN BOURDEAUX — @RepBourdeaux
  6. REP. G. K. BUTTERFIELD — @GKButterfield
  7. REP. JUDY CHU — @RepJudyChu
  8. REP. EMANUEL CLEAVER, II — @repcleaver
  9. REP. GERALD E. CONNOLLY — @GerryConnolly
  10. REP. SHARICE L. DAVIDS — @sharicedavids
  11. REP. DANNY K. DAVIS — @RepDannyDavis
  12. REP. PETER A. DEFAZIO — @RepPeterDeFazio
  13. REP. SUZAN K. DELBENE — @RepDelBene
  14. REP. ANTONIO DELGADO — @RepDelgado
  15. REP. MARK DESAULNIER — @RepDeSaulnier
  16. REP. TED DEUTCH — @RepTedDeutch
  17. REP. DEBBIE DINGEL — @RepDebDingell
  18. REP. LLIZZIE FLETCHER — @RepFletcher
  19. REP. BRIAN HIGGINS — @RepBrianHiggins
  20. REP. JIM HIMES — @jahimes
  21. REP. HENRY C. “HANK” JOHNSON — @RepHankJohnson
  22. REP. MONDAIRE JONES — @MondaireJones
  23. REP. WILLIAM R. KEATING — @USRepKeating
  24. REP. ANN MCLANE KUSTER — @RepAnnieKuster
  25. REP. JOHN B. LARSON — @RepJohnLarson
  26. REP. TED W. LIEU —        @RepTedLieu
  27. REP. ALAN LOWENTHAL — @RepLowenthal
  28. REP. STEPHEN F. LYNCH — @RepStephenLynch
  29. REP. CAROLYN B. MALONEY — @RepMaloney
  30. REP. SEAN PATRICK MALONEY — @RepSeanMaloney
  31. REP. JAMES P. MCGOVERN — @RepMcGovern
  32. REP. DAVID B. MCKINLEY P.E. — @RepMcKinley
  33. REP. SETH MOULTON —             @teammoulton
  34. REP. RICHARD E. NEAL —          @RepRichardNeal
  35. DEL. ELEANOR HOLMES NORTON — @EleanorNorton
  36. REP. ILHAN OMAR — @IlhanMN
  37. REP. CHELLIE PINGREE — @chelliepingree
  38. REP. KATIE PORTER — @RepKatiePorter
  39. REP. BOBBY L. RUSH — @RepBobbyRush
  40. REP. MARY GAY SCANLON — @RepMGS
  41. REP. JAN SCHAKOWSKY — @janschakowsky
  42. REP. ROBERT C. “BOBBY” SCOTT — @BobbyScott
  43. REP. MIKIE SHERRILL — @RepSherrill
  44. REP. ELISSA SLOTKIN — @RepSlotkin
  45. REP. ADAM SMITH — @RepAdamSmith
  46. REP. JACKIE SPEIER — @RepSpeier
  47. REP. ELISE STEFANIK — @RepStefanik
  48. REP. ERIC SWALWELL —           @RepSwalwell
  49. REP. PETER WELCH — @PeterWelch
  50. REP. SUSAN WILD — @RepSusanWild
  51. REP. NIKEMA WILLIAMS — @NikemaWilliams

Health Subcommittee Talks ME/CFS, Long COVID, and Post-Viral Illness

A congressional hearing is one of the most highly visible ways members of Congress identify and discuss priority issues. As a direct result of our powerful advocacy efforts, the Subcommittee on Health of the Committee on Energy and Commerce held a hearing on the topic of Long COVID, “The Long Haul: Forging a Path through the Lingering Effects of COVID-19.

Rep. Kurt Schrader (OR-05)
Director Francis Collins M.D., Ph.D

At that hearing, Rep. Kurt Schrader (OR-05) asked about ME/CFS and Long COVID, and the Director of the National Institutes of Health (NIH), Francis S. Collins, M.D., Ph.D., acknowledged the connection and remarked, “My hope would be if we study Long COVID [and ME/CFS parallels] … we’ll learn about both of them.”

Long COVID patient advocates Chimére Smith and Lisa McCorkell (panelists in Solve M.E.’s EmPOWER M.E. Roundtable: Elevating Your Voice in Research) gave powerful testimony about their own experiences with Long COVID, the need to address its disproportionate impact on communities of color, and the importance of trusting and learning from patient accounts at this hearing, too. They also spoke to the power of the ME/CFS community in elevating the patient-voice and helping new longhaulers get help

Lisa McCorkell
Chimére Smith

Additionally, several of the lawmakers referenced conversations with constituents about both Long COVID and ME/CFS. This is more evidence that your Advocacy Week meetings make an impact!

Here’s a summary of all of the discussions about ME/CFS at this important Congressional event:

  • Brooks explained to Ranking Member McMorris Rodgers that while post-COVID diseases share similarities with ME/CFS, and both conditions are generally catalyzed by previous illnesses, Long COVID should be researched separately.
  • On the other hand, Rep. Kurt Schrader (D-OR) noted that he spoke with ME/CFS constituents and wondered if Long COVID could cause ME/CFS. Dr. Collins highlighted the overlap between ME/CFS and Long COVID, and he hoped that the two conditions can be studied in conjunction to learn more about the causes of ME/CFS. He added that ME/CFS has been an enduring focal point for him.
  • Neal Dunn (R-FL) and Debbie Dingell (D-MI) also spoke with groups of ME/CFS and patients, and they echoed possibilities of overlapping research. Dr. Brooks reiterated Dr. Collins’ sentiments that research on Long COVID will have great benefits to the ME/CFS community.
  • McCorkell told Rep. Dingell that NIH research grants should include patients with ME/CFS to compound on a study’s utility.
  • In response to Rep. Robin Kelly (D-IL), Ms. Smith included ME/CFS patients in her push for more equitable health care.
  • Lori Trahan (D-MA) agreed with Rep. Schrader and classified ME/CFS as a possible outcome of Long COVID. She advocated for funding more ME/CFS research with the $1.15 billion in funding for the NIH from the December 2020 funding package.
  • Lizzie Fletcher (D-TX) expressed her appreciation for members and witnesses that emphasized the importance of ME/CFS solutions.

Watch a recording of the hearing here. (6 hours 14 mins)

For a great summary, check out the live twitter feed from health policy reporter Chelsea Cirruzzo, or the hearing notes from our DC team, Thorn Run Partners.

 

New Remote Action Kit Makes Online Participation More Accessible

For 2021, Solve M.E. created a new REMOTE ACTION KIT online to help everyone make the most of their advocacy week experience, no matter what energy level. It’s a one-stop shop for all your virtual advocacy needs!

The Action Kit makes it easy to:

  • Send an email to your representatives and senators
  • Tweet at Congress
  • Use our customized GIPHY stickers
  • Spread the word about Advocacy Week and put pressure on Congress to pass the COVID-19 Longhaulers Act

Let’s continue to ride the wave of our successful Advocacy Week efforts. If you have just three minutes to spare, you can use our action tool to encourage your representative to support the COVID-19 Longhaulers Act, which will directly benefit people with ME/CFS.

The online REMOTE ACTION KIT will be evolving with our continued efforts. There’s no limit to the number of times you can take action.

 

Further Reading

  • Advocacy Week Remote Action Kit – Take Action Today!
  • 12-04-20 – Chronic Disease Stakeholders Join Solve M.E. in Push for Federally Funded Research into Long COVID – PDF
  • 02-25-21 – Long COVID Alliance Recommendations to NIH – PDF
  • 02-25-21 – Solve M.E. Spearheads Long COVID Alliance to Accelerate Post-Infectious Research – PDF
  • 04-09-21 – e-Dear Colleague Letter “Support ME/CFS in FY22” – PDF
  • COVID-19 Longhaulers Act Bill Summary – PDF
  • 04-19-21 – Press Release – Long COVID Dramatically Increases Cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – PDF
  • 04-21-21- Press Release – Beyer, Bergman Announce Introduction Of Bipartisan COVID-19 Long Haulers Act – PDF
  • 04-28-21 Summary of Subcommittee on Health of the Committee on Energy and Commerce Long COVID Hearing (which mentions ME/CFS) – PDF

Our Advocacy Week events on behalf of people with ME/CFS are crucial to pushing the needle forward in both research and advocacy. The payoff is significant, and Advocacy Week is a worthwhile but costly endeavor.

Please consider making a gift to support our efforts to represent the needs of people with ME/CFS in the halls of power of Washington D.C.

We can’t do this work without you. Please give today!