What a Summer for Advocacy and Education!
We know the summer isn’t over yet, but A LOT has been happening with ME advocacy and education in the United States and the United Kingdom, and we want to make sure you are up to date, in the loop, and ready for next steps!
National Institutes of Health (NIH)
Activism in Virtual Spaces
Dr. Fauci at the NIH says the Covid-19 long haulers’ symptoms are “highly suggestive of ME/CFS” thanks to #MEAction New York Leader, Terri Wilder asking a question about ME during an International AIDS Society Covid-19 press conference. At #MEAction, we believe we must use every opportunity possible to get ME the attention it deserves- and this worked! This video and quote have been referenced in major news outlets in the US and UK.
#MEAction has published an thorough 2-part report on what changes the NIH has—or hasn’t—made to its research efforts in light of COVID-19. We’ve worked hard (especially Director of Community and Campaigns, Ben Hsuborger and the amazing work of US volunteers) to organize this information and make it available to the community so that it can inform all our activism going forward.
Holding the NIH accountable at Interagency Working Group
During the first meeting of the Interagency ME/CFS Working Group, #MEAction representatives Wilhelmina Jenkins and Claudia Carrera called out the inadequacy of the incremental federal response to this moment of national crisis and lack of robust community engagement. Our volunteers were the only people with ME to participate in the meeting. #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, stepped out of the meeting so our volunteers could be represented.
We’ve held two community meetings in the past month on the issues with NIH research efforts and what needs to be done about it, and we’re just getting started. Join our team and help us make a difference.
Stopping the harm of Graded Exercise Therapy in the UK
Open Letter to Matt Hancock
#MEAction UK sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME. Learn more here.
Open Letter to NICE
#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms.
Read the open letter here.
The ME community has faced incredible challenges in achieving compassionate clinical care and adequate research funding. Now we face a sobering, new reality: a population of post-COVID patients, or “long haulers” are experiencing long-term consequences of COVID-19. While those with “long COVID” may be diagnosed with other post-viral diseases and disorders or recover completely, many will eventually be diagnosed with ME.
#MEAction hosted a seminar for post-COVID-19 “long haulers” on Friday, August 7 in partnership with Body Politic and the COVID-19 Working Group New York to provide immediate support and resources on navigating life with ME and chronic illnesses in general.
The seminar discussed:
- symptom presentation and diagnosis of ME/CFS, from Dr. Lucinda Bateman, MD;
- pacing and management strategies from Brian Vastag, person with ME;
- coping with a new chronic illness, from Wilhelmina Jenkins, person with ME;
- advocating in your doctor’s office and beyond, from JD Davids, person with ME
You can view the seminar in its entirety here.
Our featured speakers were Dr. Lucinda Bateman, MD, co-author of ME/CFS diagnostic criteria for adults and founder and Director of the Bateman Horne Center; Dr. Katherine Rowe, MD, the lead researcher and clinician on the Pediatric Primer; and Dr. Mark VanNess, PhD from the Workwell group, the United States’ preeminent research and clinical group on exercise science in ME.
The opportunity to learn from ME experts of this caliber is rare, and the opportunity to learn about ME/CFS in the wake of COVID-19 is wholly unique.
Not all COVID “long haulers” will fit ME/CFS diagnostic criteria. However, it is vital that clinicians who treat and study long-haulers know to make ME/CFS part of their differential diagnosis, and have access to modern diagnostic criteria and management advice.
At the start of the outbreak, we created a COVID-19 resource page for people with ME that covers public health information, practical guidelines and checklists for people with ME, and general support for navigating the uncertainty and anxiety of this pandemic. We update the page frequently and encourage you to use it and revisit it as needed.
Long Haulers Facebook Group
We have a new facebook group for people with post-COVID. Our group statement: This is a place to find support, build community, and take action at the intersection of long COVID-19 and myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (ME/CFS). This space is open to COVID-19 long haulers who meet ME/CFS criteria; #pwME who subsequently got COVID-19 and are exploring how their health has been impacted; and their caregivers and allies. We also discuss postural orthostatic tachycardia (POTS) and mast cell activation syndrome (MCAS).
Covid-19 Long Haulers Resources
In addition to our COVID-19 Resource page and the COVID-19 long haulers seminar from earlier this month, we have collected key information specific to people who are experiencing ‘long COVID’. Read the article here.
Since the coronavirus pandemic hit, #MEAction has pitched news stories and worked with major news outlets to sound the alarm that COVID-19 patients are at risk of developing myalgic encephalomyelitis (ME) and other chronic illnesses. #MEAction has worked to spread this information far and wide with the help of national news reportage. Editor Adriane Tillman has been working hard responding to requests and emailing journalists, along with volunteers!
Some highlights –
- #MEAction Activist Terri Wilder, MSW and #MEAction were featured in a new CNN article by Ryan Prior discussing connections between Long Covid/ Post Covid and ME/CFS.
- #MEAction Co-founder Beth Mazur and former reporter Brian Vastag recently published a perspective in The Washington Post about the potential for COVID-19 to lead to ME and other chronic illnesses.
- The Atlantic published a compassionate and deeply thoughtful piece about COVID-19 patients who are not recovering from the viral infection in June, called “COVID-19 Can Last for Several Months” by science writer, Ed Yong. #MEAction co-founder, Jennifer Brea, was interviewed for the article, and provided background information about the viral onset of ME. Ed Yong wrote a follow-up piece in August where he quotes #MEActivist Terri Wilder who talks about how we’ve long been pressuring the NIH to take action for ME. “We all want our lives back and we want this broken system fixed,” said Terri.
- In early May, #MEAction sent out a press release about how researchers are expecting COVID-19 to lead to a surge in cases of ME across the world. Bustle picked up the story and published the article, “ME/CFS Diagnoses Could Rise After Coronavirus, Researchers Suggest.”
The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) 2020 Virtual Conference was held on Friday, August 21, geared towards researchers and clinicians and open to patients and caregivers. #MEAction‘s Jaime Seltzer and Erin Roediger attended and were so impressed by the presentations!
Congressional Actions for Expanding Care
We Are Essential Campaign
In April, #MEAction embarked on a four week campaign, #WeAreEssential, demanding Congress to recognize that the disability/chronic illness community is ESSENTIAL and must be included in the next Covid-19 packages. This campaign was launched by Center for American Progress, American Association for People for Disabilities, Little Lobbyists, The Arc of the United States, Autisitic Self Advocacy Network, Center for Public Representation, Partnership for Inclusive Disaster Strategies and Matthew Cortland, Esq.
In June, #MEAction announced our support of the Health Care at Home Act, which increases telemedicine opportunities during the pandemic.
Telemedicine enables people with myalgic encephalomyelitis (ME) to access their healthcare professionals without leaving home, which can mean the difference between being able to access a doctor or not for some people with ME. Access to compassionate care, like telemedicine, is core to #MEAction’s mission!
During the Covid-19 pandemic, people with ME have been able to utilize telemedicine as insurance companies and doctors have begun to rely on this service to treat all their patients. #MEAction has signed on to a letter of support along with many medical organizations, with the hope this act will be added to the next coronavirus relief bill.
ME-Specific Congressional Actions
#MEAction is not taking a lead on ME-specific legislation in 2020, but many awesome activists, our state chapter groups and volunteers have done amazing work driving things forward congressionally, along with Solve M.E., and we want to make sure you know what is going on and how to take action.
HR 7057 Legislation
The Understanding COVID-19 Subsets and ME/CFS Act, H.R. 7057, was introduced by Congressman Jamie Raskin (ME-08) in June 2020 as part of congressional efforts to respond to the rising number of COVID-19 cases. Emerging evidence indicates that growing numbers of COVID-19 “long haulers” are experiencing persistent, ME/CFS-like symptoms, including extreme fatigue, prolonged pain, and headaches, among other symptoms. Learn more and take action here.
Women’s Caucus and Markey Roundtable
A lot of work of dedicated volunteers led to these two events, so huge thanks to those volunteers!
On July 23rd ME/CFS US Senator Ed Markey hosted a virtual ME/CFS Health Justice Roundtable with ME advocates Jemel Aguilar, Claudia Carrera, Ashanti Daniel and Rivka Solomon. Senator Markey said that “Survivors of the coronavirus show symptoms of ME/CFS, a debilitating and chronic illness that already impacts 2.5 million Americans. I am fighting to secure the funding needed to treat this disease and give patients the care they need.”
On August 12th Solve M.E., Headache and Migraine Policy Forum, Miles for Migraine in collaboration with the Bipartisan Women’s Caucus held an online education roundtable, “Women’s Chronic Illness During a Pandemic.” Dr. Nancy Klimas of Nova Southeastern University – Institute for Neuro Immune Medicine and ME activist and RN Ashanti Daniel were on the panel!
This, of course, doesn’t cover all of it. #MEAction State Groups have been working so hard. #MEAction California and other activists met with the California Surgeon General’s office like champs, #MEAction California also welcomed Art Mirin as the new state lead, and #MEAction Maryland started a new state chapter with awesome activists Whitney Fox and Melinda Lipscomb. As always, we have been building up our support groups, highlighting community members, writing original articles, and coordinating art events and activities, including those for Severe ME Day. The summer isn’t over yet, and there is so much to do and so much ground to cover. Thanks to everyone who has been working hard to get these projects running and for keeping the fight for ME equality going!