News

IL. House of reps shows support for ME

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The plight of people living with Myalgic Encephalomyelitis (ME) was heard in Illinois this week. The parent of a young daughter with ME, Amy Mooney, worked with her state representative, Michael J. Zalewski, to introduce a state resolution that recognizes ME as a tragic, disabling disease, and that commits to improving the availability ...
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Donate Your Brain to Find a Cure for ME/CFS

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One of the best ways to advance research toward finding answers about neurologic disorders is through post-mortem brain donation - and the U.S. National Institutes of Health (NIH) reports an urgent need for donations from patients who’ve suffered with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Arranging in advance to donate ...

“Unrest” premieres in Copenhagen to major media coverage

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There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to the RiverRun International Film Festival in Winston-Salem on March 31st. Unrest made its international and European premiere in Copenhagen, Denmark at CPH:DOX, one of the leading festivals for documentary film in the

Julie Rehmeyer: Hope and Despair in Through the Shadowlands

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Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was going through,

The Cut

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Are you prepared for an 18% reduction in ME spending? I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states,

Coming Out of the Closet

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Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but

Calcium channel ion defects: research from Australia’s Griffith Uni.

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Researchers from Queensland’s Griffith University recently identified a dysfunctional cell receptor in the immune system of people with Chronic Fatigue Syndrome (CFS). Fifteen people meeting the Fukuda criteria for CFS were studied, against 25 controls. Considering the small size of the study, the results cannot be considered definitive.
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Free Webinar with Dr. Peter Rowe, director of Chronic Fatigue Clinic

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Solve ME/CFS Initiative (SMCI)'s first webinar of the year, "A Clinical Approach to ME/CFS in Adolescents and Young Adults," will be held with Peter Rowe, M.D. next Thursday, March 17, 2017. To register for the free webinar, go here: https://attendee.gotowebinar.com/register/7209349689868350723

NIH funding: What will this mean for ME/CFS research at Columbia’s CII?

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If the Center for Infection and Immunity (CII) team is successful with its RFA application proposal, this funding would clearly help the institution to become a Collaborative Research Center, and would help to fund the analysis work involved in the Monster study - albeit slowly. If you've missed it, this

Letter to NIH: End the Insult

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A person with ME for more than 38 years wrote this pointed letter to the National Institute of Health, calling its leaders to act with urgency and correct their gross neglect of people suffering with ME.

Australia: government refuses to stop funding trial focused on GET/CBT

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An Australian university is trialling a program to train health professionals in administering graded exercise therapy and cognitive behavioural therapy to roll it out nationally and internationally, despite the evidence of harm. Here is the response to a petition to ask them to stop.

How an Australian’s FOI request busted open a UK science scandal

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The 2011 PACE trial examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care, but refused to share their data. West Australian Alem Matthees filed a UK Freedom of Information Act. The ruling released the data and further examination found glaring problems with the study.

South Africa: Investigative news channel features ME & #MillionsMissing

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The South African investigative journalism program Carte Blanche has aired a well-researched segment featuring the struggle of the ME community around the world. An article about women suffering with ME in South Africa accompanies the video. The segment includes footage from the #MillionsMissing protest in September. The ME/CFS Foundation South Africa was behind
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Living with a Spouse who has ME/CFS – webinar series

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The Bateman Horne Center is honored to host a free, two-part discussion panel program: “Living with a Spouse Who has ME/CFS and Fibromyalgia." Part 1 will feature husbands whose wives are ill and part 2 will feature wives whose husbands are ill in an open discussion about an often difficult
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