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A Tribute to Mag Friel

I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”

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Call-to-Action: Urge your State Health Department to Track ME!

Urge your state health department to track myalgic encephalomyelitis/ chronic fatigue syndrome!
Call-to-Action: Please email your state health department and request they track ME/CFS (we have provided the email script for your convenience). A national conference will take place mid-April where states will decide which diseases to track as part of its Behavioral Risk Factor Surveillance System (BRFSS).
If government officials don’t track ME/CFS, how will they know that it is a problem!

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OMF to Attend First ME/CFS Conference in Montreal

“Advancing an International Research Agenda to Address ME/CFS Research Priorities,” the first International Canadian Conference on ME/CFS will be held May 3 – 5, 2018. Ronald W. Davis, PhD, OMF SAB Director and Linda Tannenbaum, OMF CEO/President will be presenting.

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Jackson Laboratory ME/CFS Center Starts Blog to Connect with Patients

The main goal of the JAX CRC project is to understand how the immune system, microbiome, and metabolome are connected and disrupted in ME/CFS, and to discover the biological basis of this chronic disease. We are hopeful that the knowledge gained from these studies will help to develop molecular markers for the diagnosis of ME/CFS, and the development of new treatments based on these new targets discovered.

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#TimeForUnrest Joins #MEAction

We’re thrilled to embark on this next phase by bringing the campaign home, under the umbrella of #MEAction. This will allow us to deepen our efforts around four core areas work: public engagement & education; patient support & community organizing; advocacy; and medical & scientific outreach.

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The Launch of "Science for ME" Internet Forum

Science for ME is our major new ME/CFS internet forum with a focus on community, support, advocacy – and, at the heart of it all, science. The forum opened this October and has already attracted over 500 members, with over 25,000 messages on more than 1,400 threads.

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SCMI Shares Research Update: the Ramsay Team 2

Dr. Fane Mensah (University College London (UCL)) and Ramsay Award Program 2016 Team 2 recently provided Solve ME/CFS Initiative (SMCI) with a progress update on their work. Mensah reflected on the driving force behind the study design, potential implications of the research, and the intercontinental partnership making it possible.

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When Medicine Fails a Child

Two years ago, our then 10-year old son started to complain of a stomach ache that did not resolve. Other things seemed wrong, too. I did not want to be an alarmist and waited an appropriate amount of time before calling for an appointment, thinking there would be a simple solution.

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Hold On, Firebird

Once upon a time, I woke up on fire. This burning was one of invisible flames, curling themselves around me and offering nothing but excruciating pain and the sort of exhaustion which bears down on you like a weight your whole body must carry.

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ME/CFS Featured in Ms. Magazine

The Solve ME/CFS Initiative recently partnered with the widely-circled women’s magazine “Ms.” and connected them with renowned author Julie Rehmeyer to produce an impactful piece on ME/CFS for the Winter 2018 issue.

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Australia Announces a New ME/CFS Advisory Committee

Australia’s National Health and Medical Research Council (NHMRC), the Australian equivalent of the NIH, has announced the establishment of an ME/CFS Advisory Committee to advise NHMRC’s CEO, Professor Anne Kelso, on current needs for research into ME/CFS, as well as clinical guidance on the diagnosis and treatment of the illness.

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