Wow! So much has happened in the last three months. Between the historic change to the National Institute for Health and Care Excellence (NICE) guideline on ME, terrific articles featured in the press, the tedious work of holding US federal agencies accountable, the effort to enhance clinical care, the continued work of promoting new research, and lifting up the voices of the many amazing people in the #MEAction community, we’ve been busy! Here’s a roundup of what the past few months had in store.
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. The harm that graded exercise therapy has caused people with ME is devastating. Now, this new guideline means that the future of care for people with ME in the UK is brighter. Want to send a thank you to the lay members on the NICE Committee for all their hard work? Sign the Kudo board today!
#MEAction and ME have been featured in prominent publications. Over 16 publications featured information on NICE because of our outreach. Several articles feature #MEAction UK volunteer Sian Leary. Staff members, Jaime Seltzer and Adriane Tillman worked hard to get ME featured in outlets to advocate for ME/CFS inclusion in studies on Long COVID. Recent articles include ABC news San Diego and the Digital Journal. #MEAction is also working to educate journalists about the research already underway exploring the parallels between long COVID and ME/CFS. Check out the summary of scientific talks that we sent out to our database of journalists to much interest from the media.
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 will submit 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. Sign the petition now to make sure your voice is heard. We’ve also created an email template so people can submit individual comments in support of our proposal.
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. Section 2 has just opened, but you can still take Section 1! 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.
We are thrilled to announce that MEpedia has reached 25 millions 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.
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.
We formally launched the #MEAction Membership Program to grow our community and foster stronger connections among members. #MEAction members support a thriving network of patients, caregivers, and allies fighting for recognition, education, and research for ME. Membership also helps us sustain and grow our work for the years to come. #MEAction members have access to virtual social events––from holiday parties to movie nights––and semi-annual membership town halls to stay up to date and help us inform our future work. Nearly 400 new members have signed up to date!
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.
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.
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 this year alone! Make sure to follow us on and to keep up with the latest news and updates!
We aren’t slowing down anytime soon. Up next we will focus on a new and engaging strategy. You should have received a survey in your email (paused to make it more accessible – more on that soon!) so we can ensure the voice of the community is at the forefront of what we do next! The strategy will include bold new steps in our advocacy and activism work. We will also be continuing to push out the Chronic Illness Survey Adventure and launch a new leadership development program! We are establishing new strategic partnerships that will enhance our work and deepen our impact in BIPOC and underserved communities. Another important venture will be to increase accessibility across our website and our resources.
#MEAction’s End of Year Giving Campaign has launched and we are leaning into a fun, fantasy theme this year! NOW is the time to support #MEAction and join us in this adventure to ultimately find a cure (or as legend has it, NOW is the time to slay the dragon)! We are pressing onward and will continue to ensure the community is at the heart of each action we take! As we continue this adventure, you’ll help us unlock fun levels and prizes as we move along our Giving Adventure game board. Begin today by making a donation of any size! Throughout the next two months, we will host challenges, engaging events such as live musical performances, DnD on Twitch, fun giveaways, character reveals and challenges, and so much more.
Living with ME is not the kind of adventure anyone would choose but we can make our end-of-year fundraising a journey of epic adventures. While we take our work very seriously, this wonderful community deserves all the fun, play, and creativity we can add!
Great news is that we have reached $15k! And we will uncover the game board on Tuesday–where the rest of the fundraising levels will be revealed. You will not want to miss this!