Taking Our Case to Parliament
We worked hard to secure the three-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research in June, with the cross-party support of MP Carol Monaghan (SNP) and five other MPs. An additional UK Parliament debate is scheduled for after the New Year.
#MEAction UK and three other UK charities – ME Association, Action for ME, and the ME Trust – prepared a parliamentary briefing on ME for the debate.
The partnership originally formed after these charities expressed interest in getting involved in the “Time for Unrest” campaign following the parliamentary screening of the documentary, Unrest. These charities had also worked together to secure the first Westminster Hall debate on the PACE trial last February.
Meanwhile, #MEAction Scotland brought a petition of 7,000 signatures straight to the Scottish Parliament’s Petitions Committee, calling on the Scottish Government to invest in biomedical research for ME, patient care, and ME education for health professionals.
#MEAction Scotland also worked with the Scottish Liberal Democrats to pass a motion to recognize, research and educate about ME. The motion now becomes party policy. It is a hugely encouraging result, and one that will hopefully pave the way for other political parties in Scotland and the UK to follow.
Building Support in Congress
Our Congress team has worked hard to secure the support of Members of Congress for people with ME in 2018 – you most likely have participated in one of our many calls-to-actions!
Our congressional team works with individuals all over the country to advocate for people with ME on a national and local level.
After two years of advocacy work, Senators Edward Markey (D-MA), Susan Collins (R-ME), Angus King (Independent – ME) and Chris Van Hollen (D-MD) introduced S.Resolution 508 – the first ME/CFS resolution since 1994! We worked in conjunction on this effort with SMCI and the Massachusetts ME/CFS & FM Association.
In November, #MEAction, SMCI, and eight other ME/CFS organizations sent a letter to our champions in the House of Representatives – Representatives Eshoo (CA18), Lofgren (CA19), McGovern (MA02), and Raskin (MD08) – requesting that they create legislation for ME/CFS. To our knowledge, this is the first time a coalition of this size and breadth has come together to address the needs of this severely ill and severely underserved disease community to the House of Representatives.
Finally, we celebrated a big holiday win in December when 42 members of Congress signed a letter about ME to the Department of Health and Human Services. The bipartisan, bicameral letter – sponsored by Senator Ed Markey (MA) and Congresswoman Anna Eshoo (CA-18) – was drafted to address the sudden termination of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) and other pressing ME issues. (This letter has since taken the place of Senate Resolution 508.)
Advocating for Appropriate NICE guidelines for ME
#MEAction UK has been working diligently on the scope process that the guideline development committee will use to update its national clinical guidelines for ME.
The National Institute for Health and Care Excellence (NICE) released its final scope for the ME/CFS guideline in October, which included responses from key stakeholders. #MEAction UK is one of those stakeholders. Read our analysis of the final scope. The final ME/CFS guideline won’t be finished until October 2020.
#MEAction UK also mobilized the community to take action when NICE announced that it had appointed a majority of members to the ME/CFS guideline development committee who promote a psychosocial model of ME. This is the committee who will re-write the country’s new guidelines on ME.
While there are excellent clinicians and advocates on the committee – and expert advisors including Charles Shepherd and Jonathan Edwards — there are several members whose presence is worrying, including Gabrielle Murphy, a co-author of PACE; Chris Burton, who is a believer in MUS and who has only ever published one paper on ME; and Alan Stanton, who is best known for recommending a young person with ME be sectioned. Read more.
Holding our U.S. Agencies Accountable
In 2018, we spent a lot of time holding our government officials accountable for their decisions affecting our lives. We fought for equitable investment in biomedical research, access to healthcare and an end to the stigma of people with ME. Here comes the alphabet soup!
- National Institutes of Health
#MEAction representatives met with the NIH director, Dr. Francis Collins, and other key NIH leaders on December 7th.
The five #MEAction representatives at the meeting called on the NIH director to take on a position of bold leadership, and to develop a comprehensive, strategic plan for accelerating research with the goal to deliver the first biomarkers and FDA-approved treatments within five years.
#MEAction made three key requests for the NIH to immediately undertake:
- Bold leadership for ME
- Disease-specific, multi-year Request for Application (RFAs) and investigator-initiated funding opportunities
- A strategic plan: comprehensive, fully-funded, cross-Institute and outcome-driven
The #MEAction representatives discussed how progress for ME is being throttled by low levels of funding, few researchers, and the NIH’s step-by-step approach focused heavily on basic research and waiting for the underfunded Collaborative Research Centers (CRCs) to deliver their findings in five years.
#MEAction appreciates that Dr. Collins, Dr. Koroshetz, Dr. Nath, and NIH program staff took the time to meet with us. We felt that there were some good discussions on opportunities to incrementally advance the field that will be important to pursue. However, it was evident that NIH leadership is not yet ready to significantly accelerate NIH’s approach and commitment to ME because they feel the science is not ready, and that the field lacks the needed researchers and high-quality grant applications. NIH reaffirmed its approach of focusing on foundational research and using the Collaborative Research Centers to create “a seed” to grow the field over time.
We strongly disagree with this approach. We see significant opportunities in both basic research and treatment trials to rapidly transform ME research, drug development, and clinical care. Achieving this requires a much stronger and more strategic commitment from NIH, one that is focused on delivering outcomes for patients as quickly as possible.
We are immensely proud of our community for rallying on the streets last May, and for the 580-page letter our community sent to Collins that culminated in this meeting with the NIH leadership.
We will continue to fight on all fronts for the NIH to deliver outcomes to people with ME as quickly as possible, including through our Congressional work. As a community, we will hold the NIH accountable and demand that meaningful outcomes are delivered for people with ME within the next 5 years.
- Center for Disease Control & Prevention
Changes to the ME/CFS website: The CDC has responded positively, and suggested we set up a meeting to discuss our proposal that specific changes be made to their ME/CFS website. We are in the process of setting up a meeting now, and will keep you posted on the date!
#MEAction sent its recommended changes for the CDC’s ME/CFS website, which incorporated feedback from the community, at the beginning of October. Our recommendations urge the CDC to make clear the harms of graded exercise; place greater emphasis on the importance of pacing; and more accurately represent severe ME.
Contract to conduct a literature review for ME treatment guidelines. The CDC has awarded the contract to the Pacific Northwest Evidence-based Practice Center (EPC), despite our petition of more than 8,000 signatures expressing concerns with the EPC.
Meanwhile, the CDC rejected #MEAction’s bid for the contract. We had submitted a bid to work in partnership with the New York State Department of Health AIDS Institute – the plan being for #MEAction to provide administrative oversight, and subcontract to the NYSDOH AIDS Institute to conduct the evidence review on ME.
The community had immediate concerns about the EPC since the EPC had previously conducted a literature review of ME for the Agency for Healthcare Research and Quality in 2014, and had recommended graded cognitive behavioral therapy and graded exercise therapy as effective treatments, failing to account for the use of the Oxford definition and other overly broad diagnostic criteria in its review.
A literature review for ME treatment guidelines is intended to synthesize the scientific evidence into a summary, and critically analyse the information by identifying gaps in current knowledge, showing limitations of theories and points of view, pointing to areas for further research, and reviewing areas of controversy.
We will continue to fight for the process to include expert practitioners and input from patients for the literature review that will shape our treatment guidelines.
- Federal Drug Administration
In 2018, we began campaigning for the FDA to keep our compounded drugs legal. The FDA is in the process of reviewing bulk substances used in IV therapies, injections, and oral compounds to determine whether or not they will remain legal or be banned from being used in compounding. (This process does NOT affect commercial supplement manufacturers – only compounded products.)
Even though oral or commercial versions of these substances are available, many people with ME are allergic to common fillers and require a clean, compounded version, or require a special dosage or format.
If the FDA does not hear from us, it is probable that the committee is not considering the needs of people with ME in its decision-making. Read more.
- Health and Human Services
We quickly came together to protest online after the HHS suddenly dissolved the Chronic Fatigue Syndrome Advisory Committee (CFSAC), saying that it had accomplished its mission and that the committee was no longer needed.
We sent a letter to Secretary Azar demanding the CFSAC be reinstated, and that the secretary meet with us to discuss the situation. HHS has responded that the Secretary Azar is too busy to meet with us, but has indicated that the HHS assistant secretary’s office will follow-up with our request for a meeting.
Photos from some of the online protests of the HHS.
Advocacy at the State Level
Our U.S. state groups have been busy building community, organizing and taking action to gain support from representatives at the local and state level. Read about some of the advocacy work happening in Georgia, Texas, Pennsylvania, New York and Florida this past year. These groups are the foundation of our work as they build support and spread awareness about our plight.
Educating Doctors, Nurses and Health Professionals
In 2018, #MEAction launched it’s Continuing Medical Education program with Unrest. Now physicians, nurses, and social workers can watch Unrest for either CME or CE credit.
#MEAction is working with volunteers to host screenings, and get more individuals motivated to provide compassionate care for all people with ME. Currently this program is only for practitioners in the United States.
Learn more about organizing a screening for doctors and healthcare providers in your hometown!
Staying on Top of the Research
We were thrilled that Jaime Seltzer, the Director of Scientific and Medical Outreach has been here to keep us all updated on the tons of research happening in the field of ME. Jaime has put it into context in our monthly research roundups. Read about the current research studies enrolling people with ME, and catch up on the latest news here.
We Launched the #MEAction Young Researcher Fellowship
#MEAction is thrilled that in 2018 we supported the work of two research assistants working on ME for one year as part of our inaugural #MEAction Young Researcher Fellowship. The goal of the fellowship is to grow the field by supporting aspiring research scientists early in their careers, and connecting them with a lab working on ME.
This year, Paula Lara Mejia (center) and Sydney Brumfield (right) each received $5,000 to help support their work with neuroscientist MichaelVanElzakker (left), a researcher at Harvard Medical School. VanElzakker’s work focuses on neuroinflammation in ME. His theory is that ME is caused by an infection in or around the vagus nerve, which is the longest nerve in the autonomic nervous system.
VanElzakker and his research assistants meet weekly to discuss articles in the field, their research, and then coordinate with #MEAction on how their learnings can support the growing list of ME resources available to patients, doctors, researchers and allies via our MEpedia project, which is a crowd-sourced website about the history, science and medicine of ME and CFS.
Our online support groups are growing rapidly with people from all around the world. Our Seniors Connect group hit 1,000 members this fall!
We also began supporting a new project this year called FFAME – Family, Friends and Allies for ME. FFAME aims to support family, friends, caregivers and allies of people with ME. The group also intends to equip allies who wish to engage in advocacy work with the knowledge and tools to do so.
Our support groups are also engaging in more monthly calls. In the past two months alone, we hosted calls for the Living with ME support group, Caregivers support group, LGBTQ support group, and FFAME!
Joining one of our many groups is a great way to get more deeply involved in #MEAction and the movement for equality. We have groups for patient support, caregiver support, state groups and social/affinity groups. Whether you are an artist, a parent, a senior, a young person, a clinician, researcher or an ally, there are so many ways to get involved online and in your local community.
To join a group, click here!
Volunteer of the Month
We are deeply grateful for our amazing volunteers. While there are hundreds of you around the world doing terrific work, here are some volunteers that we highlighted in 2018!
#MEAction Scotland – top row, left-to-right: Kim Gurav, Emma Shorter and Janet Sylvester (speaking) – this amazing trio organised a screening of Unrest at the Scottish Parliament that drew an audience of 70 people;
organised the #MillionsMissing protest in Edinburgh, and launched a petition of 7,000 signatures calling on the Scottish Government to invest in biomedical research into ME, patient care and ME education for health professionals. Read their interview.
Terri Wilder – second row, left: With a background in HIV and LGBTQ rights activism, Terri has brought her experience from the AIDS movement, and her passion for justice – and for working both on the inside and outside – to #MEAction. She has been deeply involved in the work of #MEAction New York, which has had key successes this year, including working with the state to launch a webpage about ME, and sending out a letter to over 85,000 physicians to educate them about ME. Terri was the organizer behind the crucial Per Fink protest. Read her interview.
Gail Cooper – second row, center: co-chair of #MEAction’s Congressional Advocacy Committee. Gail was our very first volunteer of the month. She is one of the key players on our Congress team working to build relationships with Members of Congress that have led to key actions for our community, including the recent bipartisan letter signed by 42 representatives showing support for people with ME/CFS, sent to the HHS. Read her interview.
Jenny Horner – second row, right: Jenny first got involved in helping to launch #MEAction UK’s #stopGET campaign to protect children with ME from the harms of being forced to exercise. She has also played an instrumental role in the long process of ensuring that the U.K.’s National Institute for Health and Care Excellence (NICE) updates its guidelines for ME based on the international scientific consensus and biological realities of ME. Read her interview.
Shelley Krause – bottom row, left: We are so thankful for the contributions of our healthy allies, like Shelley. For the past three years, Shelley has kept the community informed and updated on issues affecting people with ME through our twitter stream. Shelley first made a connection to ME as a fan of the author, Lauren Hillenbrand, who has ME, and then through Jen Brea tweeting about the desperate need for public awareness and research support back in 2014. Read her interview.
Holly Latham – bottom row, center: We nominated Holly for her dedicated work as a social media volunteer since the inception of #MEAction. This past year, we brought her onboard as a staff member. Holly continues to volunteer her time to manage the #MEAction TN Facebook Group, and the Pregnancy and Parenting with ME Facebook Group. Holly understands the painful reality of isolation from having had severe ME herself, and works hard to build online community. Read her interview.
Community Driven Petitions
We’ve launched or supported many petitions this year, including these highlights:
Per Fink: 10,348 – Stop Per Fink from spreading misinformation about ME at Columbia University.
CDC: 8,300 – Don’t hire a shoddy contractor to create ME treatment guidelines.
Afflicted: 6,579 – Remove “Afflicted” docuseries from Netflix. (Petition is still open! Sign here.)
Finland: 4,265 – Tell the health ministers that ME is not a functional disorder. (Petition is still open! Everyone can sign. Sign here.)
Norway: 5,129 – Demand the resignation of an advisory board promoting a biopsychosocial model of ME.
Our Largest Global #MillionsMissing Protest Ever
With more than 300 visibility actions around the globe in May, 2018 #MillionsMissing was our biggest yet. From large, city-wide events to private and virtual actions, we showed the world that we are still here and that our voices will be heard. We will not stop protesting until our governments invest in the research and medical care required to end this crisis.
We delivered your 580-page letter with our demands and your photos and petition signatures to Francis Collins, director of the U.S. National Institutes of Health, and to Jeremy Hunt, Secretary of State for Health and Social Care in the UK.
Thanks to your efforts, the #MillionsMissing were featured in dozens of press hits including The Guardian, BBC, Channel 4, Marie Claire, and so many more! The world is beginning to pay attention.
In the United States, there were actions that spanned the country: from large events in Washington DC, Minneapolis, New York, Chicago, Atlanta, Boston, Los Angeles, and San Fransisco, to small but mighty actions in Eau Claire, Marietta, Morristown, Denver, and Honolulu. An amazing #MEAction volunteer hosted a moderated virtual event that invited homebound people to come together!
Annette Gaudino of Treatment Action Group, Jim Eigo of ACT UP, and actress Amy Carlson gathered at the front of Central Park in New York. Partners like Linda Tannenbaum from Open Medicine Foundation joined over 80 participants in Los Angeles, CA. The Solve ME/CFS Initiative (SMCI)’s Carol Head joined the Washington, DC #MillionsMissing before SMCI’s Advocacy Day on Capitol Hill. Ron Davis and Janet Dafoe spoke in San Fransisco in honor of their son, Whitney.
Toronto represented #MillionsMissing Canada with a demand to Prime Minister Trudeau to listen to ME patients and take action. #MEAction, through the wonderful work of organizers, is building a strong presence in Canada, and there were several virtual actions with a robust social presence.
#MillionsMissing visibility actions in Latin America were in prominent locations to encourage conversation. There was a #MillionsMissings event in Mexico City, an action in Guatemala; and a demonstration in Santiago, Chile. #MEAction organizers reported that new people engaged in conversation and there was much support from family and friends.
#MillionsMissing demonstration in Mexico City
The #MillionsMissing held demonstrations, rallies, and visibility actions in 29 locations, from Birmingham to Edinburgh, London to Southhampton. (Photo of the protest in Manchester.)
Edinburgh hosted Stuart Murdoch, lead singer of Belle and Sebastian who has ME, and had the ‘flash mob’ Sing in the City perform. They ended with a “massive lie-down” to represent those incapacitated by ME. Sheffield was bright with art and music, featuring performances from dancers and musicians. St. Helen’sshowed us what just a few people with an indomitable spirit can accomplish.
In Newry, Northern Ireland, #MEAction and Hope for ME & Fibro joined forces. Unrest was shown at Newry City Hall, and a discussion with a panel of experts was held afterward. And in Southhampton, a massive array of shoes were displayed in a town square “reminiscent of war graves.”
Creative displays and music were a huge part of the European #MillionsMissing actions. Bielefeld, Germany had an illness imitation suit to give people an idea of what it would be like to have ME. Berlin featured dance, and five tele-avatars from No Isolation to bring bedridden pwME to the event. Sweden was filled with song and Norway had partner support from Norway’s ME society. A lot of institutions supported the efforts of #MillionsMissing in Prague, Czech Republic. Doctor Olli Poli gave a speech in Helsinki, Finland and, in Amsterdam, #MillionsMissing opened the stock exchange!
In Châteaubourg, France a member of parliament, mayor, and several members of local municipality council joined #MillionsMissing. Switzerland hosted an international visibility action!
Unfurling a banner for people with ME at a football game in Berlin.
Five cities participated in #MillionsMissing citywide events and so many more people joined the fight privately and virtually! Sydney represented with personalized signs and a shoe display. In Caloundra, #MillionsMissing was the “reddest, noisiest cafe table,” and brought strangers together to mobilize for the future. Melbourne, Kingston Beach, and Fremantle hosted #MillionsMissing events and asked #CanYouSeeMEnow?
#MillionsMissing demonstration in Melbourne
In New Zealand, events both big and small (two people to hundreds) – from Christchurch to Auckland to Taruanga to Hamilton – made an impact!
The #MillionsMissing events aligned themselves with the Nurse’s Day March, helping to create open dialogue with a vital part of the medical community. Outdoor displays encouraged passersby to learn and interact with displays. There was a screening of Unrest, and a small group made a powerful statement by lying down in a public space. The Embassy Theatre, an internationally renowned art deco cinema, encouraged the display of shoes and notes that greeted patrons to Unrest.
#MillionsMissing event in Christchurch.
#MEAction is thrilled that our #MillionsMissing protest expanded to new locations this year so that the fight for ME health equality can be fought everywhere, for every single person who suffers. That’s why it’s especially wonderful to see the efforts that took place in Pakistan this year and in Tokyo. #MillionsMissing Tokyo included clinicians and a film screening!
#MillionsMissing included more countries than ever before in Africa! Groups from Zimbabwe, Zambia, Kenya, Botswana and Ghana joined together with South Africa for #MillionsMissing events on May 12th! The ME/CFS Foundation South Africa also showed screenings of Unrest. The #MillionsMissing event in South Africa played on Facebook Live, featuring meaningful signs and stories from caregivers and allies. And in Ghana, the Rare Disease Ghana Initiative expressed their solidarity.
Rare Disease Ghana Initiative expresses solidarity for the #MillionsMissing
Last but not least, we had a massive mobilization online where patients and families shared their stories on social media. Many joined a 24-hour, Auckland to Honolulu video chat and virtual rally. See more of the many creative images from the protest by searching for #MillionsMissing on Facebook, Twitter and Instagram.
A HUGE Thank You!
A huge shout out to the folks who have set up a personal Facebook fundraiser to raise money for #MEAction. So many of you have set up a Facebook fundraiser to support our work, and asked your friends and family to donate. It’s such a wonderful way to support our community, and an easy way to ask your network to show their support for people with ME.
Thank you to everyone who donated individually this year, shared fundraisers, and had their companies match donations. Your support makes all the difference!
These were just the highlights of 2018 – if you can believe it! There are so many more community actions we wish we had time to highlight. Now, we will focus on 2019, and all that there is to come. We can do none of this work without you.
Jen, Laurie, Ben, Jaime, Adriane, Erin, Holly, Bri, Hannah, and Espe