What a year 2021 was!
People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms.
It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic, complex often post-viral diseases like ME more than most. With your help, we at #MEAction ensured that ME remained front and center in discussions about the COVID-19 pandemic and Long COVID.
We: Demanded change at the highest levels for people with ME; Held our governmental institutions accountable for dragging their feet and de-prioritizing ME when a pandemic and resultant post-viral disease was inevitable; Produced materials and maintained social media spaces to ensure that patients both new and old have the resources and the sense of community they need to maintain their physical and emotional well-being; Represented people with ME in numerous press publications, in print, online, and audio; Ensured we have a seat at the table: joining the core membership of the Long COVID Alliance; joining medical education and research initiatives and giving talks on ME and its relationship to viral illness; Created a patient-sourced research initiative to guarantee people with ME and other chronic, complex diseases have their voices heard; Brought thousands virtually together around the world for #MillionsMissing, to move from recognition to action
2021 highlights:
NICE was a victory!
After 14 years of recommending graded exercise therapy (GET) for people with myalgic encephalomyelitis (ME), NICE has removed this harmful treatment from its new guideline on ME/CFS. Activists with #MEAction in the UK and worldwide have been working strategically for years to get the recommendation of GET gone for good! This new guideline is the result of years of hard work from countless people who put the experiences of people with ME at the forefront.
In the Press
#MEAction and ME have been featured in prominent publications. Over 16 publications featured information on NICE because of our outreach. Recent articles include ABC news San Diego, Digital Journal, as well as All Things Considered on NPR. We are also working to educate journalists about the research already underway exploring the parallels between Long COVID and ME/CFS.
Agency Work
Ben HsuBorger and US advocacy volunteers have been working hard to hold the National Institutes of Health, the Centers for Disease Control, and the National Center for Health Statistics accountable to people with ME. Earlier this year, ME/CFS researchers, #MEAction, OMF, and Solve M.E. wrote a joint letter to NIH leadership regarding the research agenda for Long COVID, including suggestions that would shed light on ME/CFS. In advance of the Trans-NIH ME/CFS Working Group telebriefing, both #MEAction and Solve M.E. submitted a list of questions about ME/CFS research that we requested they address during the meeting. On November 15, #MEAction submitted a petition letter to the National Center for Health Statistics in support of our seven organizations’ joint proposal to fix the catastrophic lack of ME/CFS tracking in the US.
Community-Based Research
Over 1200 people have taken The Chronic Illness Survey Adventure aimed at providing clinicians and researchers with key data that could educate and generate better care for and quicker diagnoses of ME and other similar chronic diseases. Our hope is that the survey will identify aspects of the disease that are well understood by patients, but not as well understood by the clinicians who see them and the researchers who want to learn more.
25 Millions Views!
We were thrilled to learn that MEpedia reached 25 million views! That means that more and more people are looking to #MEAction and MEpedia for guidance so that we can help ensure accurate information is getting to the public with people with ME at the center.
Severe ME Day 2021
In recognition of Severe ME Day on August 8, 180 people with severe ME sent in photos, drawings, writing, and videos of their work to #MEAction’s Severe ME Artists Project. With over 300 pieces submitted, we created the Severe ME Artists Project to allow those with severe ME to connect with the community about their artwork, share stories about their creative journey, and provide an opportunity to be seen. Severe ME Day of Understanding and Remembrance was started in 2013 by the 25% ME Group as a response to the death of Sophia Mirza from the UK.
Severe ME Advocacy
We advocate for our most severe community members when we are able to push people with the most power to make changes that severe patients needs to survive. Though we cannot do this for everyone, we leverage these terrible circumstances to push for changes in care and policy so that more people do not have to suffer. Click here to sign our most current petition for Madeline.
ME Education
We take education seriously – whether that is educating clinicians or the general public. Through Activist Camp!, helmed by Terri Wilder, we have trained over 50 new activists to make our movement smarter and more strategic. We’ve also partnered with organizations for public talks on ME and Long COVID, as well as racial disparities. Jaime Seltzer has given presentations about the importance of the patient voice in research at NIH-funded CRCs and a plenary talk at the Society to Improve Diagnosis in Medicine’s Annual Conference. We also continue to encourage people with Long COVID to #StopRestPace, and the feedback we have received is so heartening. We want to ensure that people with Long COVID don’t feel like they should push past their energy envelope and we know this advice is working for many people who heed it.
Community Engagement
Through #MEAction’s support groups, writing groups, and literary series, we continued to find ways to bring the #MEAction community together for conversation, learning, and creative exploration. #MEAction has featured powerful stories from #MEAction’s Writing from Our ME Lives group and Steven Molony chatted with Rachel Riggs about her cookbook, Clean Eating Foodist, whose recipes are designed for food-sensitive people with ME such as herself. Recently, Erin Roediger interviewed ME advocate and author Jean Meltzer who released her first novel, The Matzah Ball, which features a protagonist with ME. Erin has also worked hard to support volunteers at the State Chapter level, as well as in the UK.
You Inspire, You Motivate, You Activate!
Meanwhile, at #MEAction, we aim to lift up initiatives and be supportive allies. Through the work of Holly Latham’s social media efforts, we have been able to share posts with our growing audience and follow and engage with those in allied organizations and other chronic illness and disability rights spaces. Of course, first and foremost, we work hard to reach our community whether you have had ME for years or are new to this illness and looking for connection, information, and ways to get involved. And it is working! We’ve seen 460,000 reached on Facebook and Instagram, 2.75 M impressions on Twitter, just in 2021 alone! Make sure to follow us on social media to keep up with the latest news and updates!
You wouldn’t believe it, but that is not all; these are just the highlights. You can also check our news page for the most recent announcements.
#MillionsMissing 2021
#MillionsMissing 2021 was inspiring, touching, moving, and impactful! Once again we participated virtually but we could feel our strength in numbers, even though we are still not able to meet in person. And the community did not disappoint. You were amazing.
A focus for this year was to share that #YouAreNotAlone, not during #MillionsMissing, not ever. We recognize the stakes are high and we know there will be #MillionsMore people joining our community because of COVID-19. #MillionsMissing is our opportunity to show the world we will continue to fight, to not give up, and to demand more.
You can check out more this year’s #MillionsMissing virtual events and interviews, Artist Salon, art and stories shared, plus the actions people took across the globe by reading our #MillionsMissing 2021 Highlights article.
#StopRestPace
Folks newly diagnosed with myalgic encephalomyelitis or Long COVID may not understand the importance of #StopRestPace. Armed with #MEAction’s Pacing and Management Guide, MEpedia’s section on pacing, tips from the community, and our own Holly Latham’s 25 years of experience living with ME, Holly wrote the 12 Days of Pacing in hopes of making a real-life difference in our community. As always, this community shared their hard-won knowledge and wisdom with one another. We all gained some great tips and helpful reminders.
We have had wonderful feedback on our #StopRestPace campaign on how helpful it has been for people who otherwise might not have known to follow those crucial steps rather than push themselves to the point of crashing.
If you are new to our entire #StopRestPace campaign, click here.
End of Year Giving Adventure
Fundraising is a difficult, yet essential aspect of continuing our fight for you. The challenges brought about by this terrible disease are long and arduous. So we thought we’d put the “fun” in fundraising with our End-of-Year Giving Adventure.
Together, we raised over $115,000 (£87,000), exceeding our goal by over $15,000!
The work we do wouldn’t be possible without the generosity and support of our wonderful community. We go into 2022 committed to continuing our fight for visibility, better treatments, better care, and ultimately a cure.
#MEAction has been busy and we look forward to continuing to work and advocate for YOU through 2022 and beyond. Thank you, and stay tuned!
In solidarity,
All of us at #MEAction
