Community News Roundup: Building a Network of Family, Friends and Allies for ME

It has been another active month in our community! A few major items to share: 

Family, Friends and Allies for ME

#MEAction is supporting a new project to build a support network for healthy allies 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.
The group will hold its first call on Saturday, Sept. 8 at 4 p.m. New York / 1 p.m. San Francisco / 9 p.m. London time. RSVP to join the call. Join the ongoing conversation on the FFAME Facebook Group, or sign up to receive email updates.

Volunteer of the Month: Shelley Krause

While we are on the subject of healthy allies, we are honored to nominate Shelley Krause as our volunteer of the month. Shelley is a healthy ally who has kept the ME community informed via our Twitter stream for the past three years. She has no personal connection to ME, but got involved after the “Canary in a Coal Mine” (Unrest) Kickstarter campaign in 2013. She is also an inspired poet. Read more about her work here.

Fighting the stigma of “Afflicted”

Netflix released its docuseries, “Afflicted,” about people with chronic illnesses that includes the story of Jamison Hill who has severe ME. The community anticipated that the documentary would shed light on the biological nature of these diseases and the struggle for patients to find relief and support in the face of stigma and mistreatment. Instead, the producers manipulated the stories of the participants to paint a psychosomatic portrayal of their diseases that resembled more a reality TV show than a truth-seeking investigation.
There has been an outcry from the chronic illness communities at the producers’ deception, framing, and dishonesty. Read some of the responses, including an essay from some of the subjects featured in the docuseries; an opinion piece by Jaime S, #MEAction’s Director of Scientific and Medical Outreach; a critique from The Mighty’s Associate Chronic Illness Editor, Paige Wyant; an article in the UK’s Daily Mail; and an essay in Patheos. 
Meanwhile, the talented Sarah Louise Jordan shared a timely piece with us about how to deal with the naysayers. “People can be infuriating. People can tell you that you are wrong about your own experience. That if only you were braver, bolder, cleverer, or otherwise different you’d be more. Whether the more they have in mind is more well, more sane or more able… But that is not your failure, it is theirs. It is a failure of their grace, and their humanity and oh, perhaps most toweringly of all, it is a supreme failure of their imagination.”

Upcoming Conferences and Events
  • Faith and ME: A discussion about living with faith and ME will take place on Sat., Sept. 1st at 1 p.m. New York / 10 a.m. San Francisco / 6 p.m. London time. Has ME caused you to lose faith? Strengthened your faith, or question your life in the face of struggle? Join the open dialogue. RSVP hereAll faiths welcome.
  • The Open Medicine Foundation‘s Second Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University is coming up on September 29th! Last year’s event was very informative and this year’s speakers look very interesting. You must register to attend in person by September 15th. Register here. If unable to attend, a livestream is also offered and you can register now! If the livestream is still a bit too much, a recording will be made available.
  • The Dis 2018 Conference is happening on Oct. 13 at MIT in Boston. We encourage ME activists to consider attending the conference – especially those living nearby, which is an excellent opportunity for the ME community to build allies with and learn from the disability community. The Disability & Intersectionality Summit (DIS) is a biennial one-day conference that centers the experiences and knowledge of multiply marginalized disabled people such as queer disabled people of color, undocumented transgender disabled people, or formerly incarcerated disabled people among others. Learn more.
  • Northern Ireland will host a conference on ME and fibromyalgia on 17th of Sept. in Belfast hosted by the charity Hope 4 Me and Fibro Northern Ireland. Chief Medical Officer for Northern Ireland, Dr. Michael McBride, will open the event, and US specialist, Jose G Montoya, MD, of Stanford University will deliver the keynote address.The conference will include a workshop called “Management of ME/CFS: Adult & Paediatric ‘First Do No Harm’” designed for all NHS healthcare providers, decision makers, university lecturers, medical students, teaching staff and benefits agency representatives. The workshop has been approved by the Federation of the Royal Colleges of Physicians of the United Kingdom for 3 category 1 (external) CPD credit(s.Register here. #MEAction would love to support a delegation of volunteers to attend the conference. If you hope to attend, please let us know at [email protected].

A day of remembrance and respect

On Aug. 8, the ME community remembered and honored people with severe ME as part of Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance. We took time to remember just a few of those who we have lost to ME, including ME activists Harvey Keith Carden, Anne Ortegren and Robert (Bob) Courtney.

Telling her story of severe ME
  • Twenty-year-old, Linda, from Sweden posted her story on Facebook and asked it to be shared to the world. She writes about living with severe ME for the past three years.

“I was only 17 when severe ME turned my world upside down and robbed me of everything I know. My name is Linda and I’m 20 years old. I’ve spent the last 3 years of my life lying in a dark and silent room. I can’t sit up. I’ve been tube fed for the last 2 years because of difficulties getting enough fluids and nutrition. Every movement, light and sound causes severe worsening of symptoms.
“I miss eating real food, I miss seeing the sky, I miss all the little things in life that you easily forget to cherish, and I miss the life that ME stole from me.” Read Linda’s story.

  • Glamor magazine shared the story of 27-year-old Jessica Taylor-Bearman’s journey to live through her most difficult days with severe ME in a hospital ward separated from her family, and her desire to capture every part the experience as it unfolded despite not being able to write. Read an excerpt from Jessica’s book, “A Girl Behind Dark Glasses.”

“Tom bought me a limited edition of The Diving Bell and the Butterfly. The author had suffered from locked-in syndrome after having a massive stroke. He was paralysed and could not speak but he found a way to communicate by using one eye to blink for each letter.

“It transformed my vision of what I could achieve by making me realise that I didn’t have to wait to start writing my book until I was better; I could begin now. I just needed to find my own way of writing. I would get someone to sit, listen and try to make sense of the words that made their way through my brain fog.” Read more.  Order the book.



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