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Community Roundup – Telling Our Story to the World

Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME). In our fall roundup, you’ll be inspired reading about the work and accomplishments of some of our community heroes.

Support the #MEAction community by donating to our #GivingTuesday campaign this Tuesday, Nov. 27  where Facebook will match your donation! Spread the love with your social media circles! 


ME in the News

Stuart Murdoch rests on a park bench during a visit to the United States.

CNN published an article about Indie pop star, Stuart Murdoch’s, 28-year long journey with ME. Getting sick with ME first drove Stuart to cling to music. Though Murdoch’s career took off and he spent years in near-remission, he said his disease has gotten worse over the past five years, states the article. The article was written by Ryan Prior, a journalist who has ME and who serves on the board of #MEAction. 

After a performance, he said, “I’m the boring one who sneaks back to the hotel and gets into the bath … perhaps as soon as the concert is over. I’m going to feel sick, and I’m going to look like an invalid for the next 24 hours,” Prior writes.

Australia’s Ketra Wooding writes about being 33 and living in a dementia ward due to severe ME/CFS. Her essay was published on the news website, Stuff.  Ketra sailed the world, working on luxury yachts before she got sick. This summer, she made an educational video about ME called “After Unrest.”

 


Volunteer of the Month: The Woman Behind the Per Fink Protest 

Photo of woman holding speaker phone

Terri speaking at a #MillionsMissing protest in New York City.
| Photo by Megan Ghiroli

We are thrilled to honor New Yorker, Terri Wilder, as our fall Volunteer of the Month. Terri spearheaded the protest and petition against Per Fink last month where the community took a stand against the harmful treatments that Per Fink has forced upon people with ME.

Terri Wilder has been a monumental activist with #MEAction since getting diagnosed with ME in 2016. We are in awe of her commitment to fight for real solutions for our community.

Born and raised in Georgia, Terri has fought for the rights of people living with HIV since 1989. Inspired by her advocacy work with ACT UP, she applies lessons learned from the AIDS movement to her ME activism.  Having seen the incredible progress that the AIDS community made through grassroots organizing, Terri is committed to both “indoor” and “outdoor” activism, meaning she’s not afraid to protest when the government fails a community. Read the full interview.


Finding support and community online 

We are excited by all that the #MEAction support groups are accomplishing. Our Seniors Connect group hit 1,000 members this fall! Read their latest update. #MEAction offers dozens of support groups organized by location, topic and demographic with the goal to provide a supportive environment for everyone. View them all here. It has been a busy time! We are seeing lots of growth.

Our support groups are also engaging in more monthly calls. In the past two months we have hosted calls for the Living with ME support group, Caregivers support group, LGBTQ support group, and FFAME (Family, Friends and Allies for people with ME)! 


Thank you to everyone who fundraises for #MEAction through Facebook

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. In September, our community raised $4,058, and in October, you raised $3772. On your birthday – or at any time – set up your own Facebook fundraiser for #MEAction.


Australia 

Emerge Australia surveys 600 people with ME/CFS 

Emerge Australia released a report on the findings of a survey of more than 600 Australians with ME/CFS. The National Survey of the Health and Wellbeing of People with ME/CFS was carried out in conjunction with ASDF Research, and highlights the need for greater understanding of ME/CFS in Australia. Read more. 


Insight features hour-long program on ME/CFS

An hour-long, nationally televised discussion panel on ME/CFS in October drew criticism from the patient community, which felt that the program overrepresented the likelihood of recovery from the illness, and promoted harmful graded exercise therapy (GET).

The panel aired on Insight, a weekly current affairs show, and featured a panel of guests and a studio audience who participate in the discussion. For this episode on ME/CFS, producers invited input from seven patients ranging from the severely ill to the recovered, as well as leading Australian researchers, a specialist general practitioner, an exercise physiologist, and a key government advisor and clinician. Read more.

Listen to this fantastic interview with ME activist, Anna Kerr, on Uncommon Ground. (Listen to the last eight minutes.)


Austria

The Austrian Society for ME / CFS tells the story of Sabine, and describes the situation of people with ME in Austria. Also, check out their fact sheets.

Vienna (OTS) – We receive a voice message. It is Sabine * who has been completely bed-bound since a rehab stay a year ago. Quietly, barely audible she tells her story. You can clearly feel how weak and desperate Sabine * is. After an alleged burnout, she was treated through training and has given according to the so-called “obligation to cooperate” everything. She has trusted the doctors and now she is carrying the damage – all by herself and probably all her life. Admittedly, this is one of the more serious cases, but since we set up our contact point in the middle of last year, ME / CFS sufferers report practically daily and tell us about similar experiences.


Germany

General Anzeige published an article about the heavy criticism of Netflix’s docuseries Afflicted, and features the real story of one of its protagonists, Jamison Hill, who has ME. (Sign our petition calling for Netflix to remove Afflicted from its site.) 

 

 


Ireland

ME Advocates Ireland (MEAI) protested Ireland’s two tier health service in Dublin on October 6th, along with numerous other advocacy groups. A member of MEAI was interviewed and featured in this video in the Irish Times. 

 

 


United Kingdom

David Tuller in conversation with Brian Hughes about the PACE trial 

At an event in Newry, professor Brian Hughes, PhD, spoke with David Tuller, DrPh, about how science and psychology went wrong in the Pace Trial. Listen to the conversation.

Hughes is the author of the book “Psychology in Crisis,” which examines the errors of the PACE trial. David Tuller is a Senior Fellow in Public Health in Journalism at the University of California, Berkeley, California. After Tuller covered the PACE trial results for The New York Times in February 2011, he became concerned with how the flawed trial has affected people with ME. Tuller has since written over 100 articles or posts about ME for news outlets and the Virology blog.

David Tuller was also featured in a video interview here, where he discusses issues surrounding ME, organized by patient Anil van der Zee.


#MEAction’s Janet Sylvester (first left) with Helen Brownlie of 25% ME Group and Ewan Dale and Charles Shepherd from the ME Association.

Scotland: Major medical conference features ME 

More than 250 GPs attended a workshop about ME at the RCGP Conference – the must-attend event of the year for GPs and practice team colleagues to learn about the latest clinical and policy developments across the UK. #MEAction Scotland was delighted to be a part of the Forward ME exhibition stand, staffed by volunteers and staff from #MEAction Scotland, the ME Association, Action for ME, 25% ME Group and Tymes Trust. Read more


Creators to launch series of short videos about ME

The Voices from the Shadows team of Josh Biggs and Natalie Boulton have announced a new ME project: Dialogues for a neglected illness. The project was recently awarded a Wellcome Public Engagement Fund Award, which will enable a much more thorough project.

Dialogues for a neglected illness will consist of a website with a series of short videos and links to existing material, creating a multi-faceted picture of ME – covering different aspects of the illness from both patient and professional perspectives, and the issues that have engulfed them.

If Wellcome Trust sounds familiar, you might be remembering that Unrest won the Wellcome Trust’s Illuminate Award for “vibrant and innovative filmmaking inspired by scientific understanding.” It is good to see Wellcome funding this new ME project!


Tom Kindlon is finalist for the Wego Lifetime Achievement award!

Way to go, Tom! Tom has published 23 articles in peer-reviewed journals, and has lived with severe ME for 21 years since the age of 16. Watch the uplifting video about the finalists here. (Tom is the first one featured.)

 


Wales: Two BBC programs explore the devastation of ME 

An estimated 13,000 people in Wales have ME and are not getting the treatment that they deserve. An “Eye On Wales” program delves into the story of this humanitarian crisis to find out more. Listen here. BBC News writes about doctors who don’t believe patients with ME. Read the article and watch the video here


Jessica Taylor-Bearman hosts book signing 

Jessica Taylor-Bearman had a book signing for her book, A Girl Behind Dark Glasses, at WH Smith Maidstone on September 8th. A Girl Behind Dark Glasses is a first-hand account of Jessica’s life before and after her diagnosis. It charts her period in hospital, where she suffered with an extremely severe form of the disease. ME left her there from the age of 15 to 19, unable to move, speak, feed, or toilet herself. Buy her book.


Belfast: “First Do No Harm” annual conference 

Hope 4 ME & Fibro Northern Ireland held their annual conference, “Management of Adult & Pediatric M.E.: First Do No Harm’” in Belfast in September. The Chief Medical Officer for Northern Ireland , Dr. Michael McBride, opened the event with these remarks,” No one, no patient should have to fight for recognition of their condition. That many of you have had to do so is a matter of great regret to me.” Stanford’s ME specialist, Jose Montoya, gave the keynote address.

Purchase a DVD of the conference here.


Kiltwalkers raise money for #MEAction UK 

The Cairn kiltwalk – and everyone who donated to the fundraiser – raised a total of £5,521.16 for #MEAction UK! (The money will go towards hiring an on-the-ground, UK co-ordinator for advocacy, campaigns and medical outreach.)

When Stuart and Douglas were first made aware of the plight of ME patients and the severity of the illness, their response was to find out how they could help the ME community, and fundraising came up. Stuart laid the groundwork by getting #MEAction listed on the Kiltwalk page – a large task in itself! And Douglas set the wheels in motion to get #MEAction approved as Cairn Energy’s charity of choice for 2018 and drummed up a team of walkers. 

An enormous thank you to the whole Cairn Energy Team, especially Stuart Gilbert and Douglas McDonald.

 


United States 

Mass. General Hospital hosts screening of Unrest

The world-renowned Massachusetts General Hospital in Boston held an Unrest screening and panel discussion in September, attended by more than 70 people. The screening was hosted by Boston University’s College of Health & Rehabilitation Sciences, Sargent College Alumni Association, in conjunction with the Massachusetts ME/CFS & FM Association. Read more.

 

More than 140 attend Unrest screening and discussion in New Hampshire

ME activist, Rivka Solomon, writes: “What a FANTASTIC event for ME on October 16th in New Hampshire! About 140 crammed into a conference room (and the over flow room) at Dartmouth-Hitchcock Medical Center for an event hosted by the Geisel School of Medicine at Dartmouth, and the Massachusetts ME / CFS & FM Association. The large room was totally packed. Every seat taken, even folks sitting and standing in all the aisles and lining the back wall, and others were in the “over flow” room where the event was live-streamed.” Read more.

 


ME advocates seek support from bridge players for ME

Art Mirin, an ME advocate and competitive bridge player, is applying to the American Contract Bridge League (ACBL) for a charity donation on behalf of the Open Medicine Foundation. He is seeking as much grassroots support as possible from bridge players. If you have a connection to an ACBL member (perhaps family or friend) who might be willing to submit a statement supporting ACBL charity money being used on behalf of ME/CFS, please email aamirin@comcast.net. This is building on long-term efforts started by advocate, Cindy Siegel Shepler.

Keep us going strong!

Support our Work

 

Donate to our #GivingTuesday campaign on Tuesday, Nov. 27 and Facebook will match your donation. Promote the fundraiser with your social media circles to spread the love!  

Donate to our UK fundraiser, and help us grow our UK team.  

Donate to the UK team
Categories: Advocacy, All News, Arts & Letters, Australia, Awareness, Community, Featured news, Fundraisers, Germany, Global, Ireland, Local advocacy, Monthly Roundup, Scotland, Uncategorized, United Kingdom, United States, Volunteer of the Month

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