Solve ME Advocacy Week: Sign Up Today!
An interview with Solve ME to chat about this incredibly impactful advocacy opportunity: No One Tells your Story Better than You
I had the honor of interviewing Emily Taylor, Vice President of Advocacy and Engagement at Solve ME. Solve ME is one of the oldest ME/CFS advocacy groups, founded in 1987. We chatted about Solve ME in general, Long Covid, and their upcoming Advocacy Week program.
Patients, caregivers, and allies, this is your chance to participate in a major advocacy event that already has momentum. Momentum creates more momentum, so jump on board!
Sign up now: Advocacy Week 2023 - Solve ME/CFS Initiative (solvecfs.org)
MK: For folks not intimately involved in the ME/CFS or Long Covid community, can you describe Solve ME and what your primary mission is? Has Long Covid changed anything for Solve ME?
ET: Solve ME is a non-profit organization dedicated to research, education and advocacy for post infectious illnesses, specifically ME/CFS and Long Covid.
The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.
Our work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world are laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.
ET: ME/CFS is myalgic encephalomyelitis/chronic fatigue syndrome, a very difficult illness that is commonly associated with viruses. Long Covid, as you have probably heard, is the term given to a host of illnesses that can happen after a COVID-19 infection.
Long Covid has caused Solve ME to expand our mission to look more closely at post infectious illnesses in general. Post infectious illness is a board term covering a whole family of illnesses. It’s a similar concept to cancer, which has a lot of different subtypes. Post infectious disease also has a lot of subtypes. We are looking at them as a family of diseases to see what can be learned at a more macro level.
MK: It seems like Solve ME tackles both medical research and legislation, is that accurate and why have you decided to address both needs?
ET: Solve ME consciously designed itself around three main pillars that form a critical multidisciplinary program—research, education, and advocacy. These are the typical pillars that make up successful health-focused organizations.
I have the privilege of running all of our advocacy work—including governmental affairs and legislation. Our amazing research team conducts our grant program, research facilitation, and the early career investigative award program. Our education work is largely run by our communications team by establishing media partnerships, for example. We recently completed a public service announcement campaign for Long Covid that we’re really proud of.
How Long Until We Solve Long Covid? - Solve ME/CFS Initiative (solvecfs.org)
MK: Advocacy Week seems like an enormous undertaking and an incredible opportunity for the patient, caregiver, and ally communities. Can you tell us what it’s all about?
ET: Advocacy Week is our flagship program built on a single principle: “No one tells your story better than you.” The week provides both in-person and virtual opportunities for the community to speak directly with their Senators and/or Representatives. We try to make it as easy as possible to bring your stories into the halls of power. Whether it’s the person with the illness or a representative you appoint, your healthy ally, Solve ME focuses on making the program fully accessible.
We offer all the training, support, and materials needed to make that journey as easy as possible. Patient stories matter and the more stories we can directly share with those in power, the greater our chance for change. Advocacy Week is a chance for those impacted to share their stories directly.
MK: How can people get involved in Advocacy Week and what can they expect?
ET: Sign up!
Advocacy Week 2023 - Solve ME/CFS Initiative (solvecfs.org)
Anyone who’s interested can sign up to participate either in-person or virtually. The in-person lobbying component available this year on Tuesday April 18th is reserved for the Senate and our virtual lobbying opportunity includes meetings with the House on Thursday April 20th. Other virtual events are scheduled throughout the week, including our signature event, EmPOWER ME.
EmPOWER ME is a program dedicated to the concept of, “So no family has to learn the hard way.” It’s truly a patient driven program. The cornerstone event of the program is the roundtable that takes place during Advocacy Week. This year, that event will be taking place on Friday April 21st. Check out past roundtable events here:
EmPOWER M.E. - Solve ME/CFS Initiative (solvecfs.org)
The week is packed full of events, with rest breaks built in, so people can safely participate at various levels. This week is intended to be a whole week of accessible engagement for those with this disease and for people who love someone with this disease. Advocacy Week is designed to provide access to the types of engagement that likely wouldn’t be available to many in the community. (Note: the first three training sessions below are interchangeable, you can choose to attend one or all.)
Advocacy Week 2023
Monday, April 3rd at 2pm PT/5pm ET — Virtual Training
Friday, April 7th, 2023, at 1pm PST/4pm ET — Virtual Training
Tuesday, April 11th at 4pm PT/7pm ET — Virtual Training
Monday, April 17th, 2023 – Training Day – Washington DC & Virtual
Tuesday, April 18th, 2023 – Senate Advocacy Day – Washington DC
Wednesday, April 19th, 2023 – Social Media Action Day – Virtual
Thursday, April 20th, 2023 – House Advocacy Day – Virtual
Friday, April 21st, 2023 – EmPOWER ME Day – Virtual
MK: What’s been the impact, lessons learned, and evolution of Advocacy Week over the past 7 years?
ET: As far as the program’s evolution, we really appreciate when people take the time to fill out our feedback forms—they’re gold! We try very hard to incorporate that feedback into our future programs. Transportation, travel assistance, wheelchairs and lot of different accessibility pieces have been worked into the structure of the program as we’ve evolved. It’s really a program tailor-made for those with disabilities, hopefully with as few barriers as possible. That’s been a key theme that we’ve improved upon.
We had the massive challenge of pivoting our in-person events to virtual when COVID-19 started. We learned a lot of lessons, mainly the world can, in fact, be more accessible—we can bring people from their beds into the offices of Congress. Those virtual components will remain available for events going forward. We’ve learned a lot about implementation through the years, but the core tenet of bringing personal stories to those in power has always been the central theme. It’s remained strong and true throughout our Advocacy Week events.
Progress, momentum and generating political will is a commitment that takes time. As successes and gains happen, they contribute to the next gain and each builds upon the other. Momentum creates more momentum. We really started seeing the effects of this after the National Academy of Medicine published it’s 2015 paper, “Beyond ME/CFS: Redefining an Illness” (MECFS_ReportBrief.pdf (nationalacademies.org)) because that was the first strong governmental publication that explicitly stated ME/CFS is a physiological disease—not a phycological one--and it’s woefully underfunded.
From 2015 to 2020, Solve ME was building momentum off of this publication, developing relationships with members of Congress, building political capital and accessible networks. So, when the COVID-19 pandemic started we were perfectly situated in all the right places to get the message out. Everything we had been doing led up to this moment and we were able to successfully lobby for the $1.25 billion RECOVER initiative (Home | RECOVER COVID Initiative).
We were screaming that a big investment needed to happen for sufficient research into Long Covid. We continue to try to shape the narrative around Long Covid and post infectious disease as a long-term strategy to maintain and build additional momentum.
We know there’s a tsunami of post infectious disease upon us. The immense pain and suffering that continues to be underrepresented and stigmatized is being harnessed into these advocacy actions and streamlined into a strategy to make a difference for those suffering. It’s been truly humbling to see all that from the front lines.
MK: Well, I sure am glad Solve ME is on the front lines. You all bring us hope. I’m looking forward to Advocacy Week. Thank you.
Thank you for this great interview! I've posted links to this on my mastodon account and also on the Science For ME forum.