2021 Advocacy Week Report

The 5th Annual ME/CFS Advocacy Week hosted by 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 by COVID-19 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 COVID-19 Long Haulers Act.

We’re thrilled that over 65% of those advocates said this was the first time they have ever called a congressional office or spoken to one of their representatives. Energizing and training new advocates to take part in our expanding efforts for ME/CFS and Long Covid 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 great resources 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


View the slide deck for this presentation
here.

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 with their congressional representatives, including 49 direct, member-level meetings. Our organizers provided streamlined meeting tools to connect volunteers to congressional offices via personalized zoom and phone conversations. Using cutting-edge online tools, 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 and Rep. Jack Bergman led a special bipartisan announcement of the COVID-19 Long Hauler 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


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. 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 discussed 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 Long Hauler 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 Beyer and Bergman 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

Past Advocacy Weeks

2021 ME/CFS and Long COVID Advocacy Week and Online Lobby Day

April 18 – 24, 2021
View report

2020 ME/CFS Advocacy Week and Online Lobby Day

April 19 – 26, 2020
View report

2019 ME/CFS Advocacy Week and Washington DC Lobby Day

April 1-7, 2019
View report

2018 ME/CFS Advocacy Week

May 12 – 16, 2018
View report

2017 ME/CFS Advocacy Week (joint with #MEAction)

May 13 – 17, 2017
View report