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.