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Epic Measures: How One Man Changed the World (and Possibly ME/CFS and FM As Well)

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Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have a long, long way to go before they get the attention and resources they deserve. It would take a heroic leap to quickly achieve what people with these diseases deserve and what the diseases themselves - given their economic costs / burdens ...
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US: Read Lily Chu’s CFSAC Testimony

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Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public ...
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ME/CFS Advocacy Down Under in 2016

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2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016.
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Dimmock, Mirin & Jason: Estimating disease-burden in the US

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Yesterday, Mary Dimmock, Arthur Mirin and Leonard Jason published a hallmark study in disease burden in myalgic encephalomyelitis. Why is funding so low? Funding for ME/CFS is arguably the lowest per patient for any major disease in the United States, averaging to about $5 per patient per year.  Compare this to multiple
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Dr. Nahle’s Webinar Provides Overview of Current Research

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The Solve ME/CFS Initiative (SMCI) hosted a webinar December 15 in which Zaher Nahle, PhD, MPA, summarized research in which they are participating or supporting. Nahle is the Vice President for Research and Scientific Programs at SMCI. Nahle began by listing the problems associated with ME’s perception, funding, and research.  “The
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Three Schools of Alternative Medicine Teach about ME

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Note: This is the final part of our series on education in ME/CFS. To start reading at the first article in this series, Top Medical Schools Teach Little About ME/CFS, click here. Finding a physician with knowledge of ME can be challenging, but practitioners of three branches of alternative medicine may

Fluge, Mella, and Armstrong: more support for disordered metabolism in ME patients

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One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered, and the studies, small.  One group will discover X is elevated in 20 ME patients, only to find that when the test is done on another 13 patients two years down

Update: the ongoing work of #MillionsMissing

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  Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May -  and in 25 cities in September - to protest their government's neglect of people with ME. While the posters are now stored away, activism has continued behind

CALLING ALL ACTIVISTS: Tell Dr. Francis Collins— Don’t Miss Your Deadline! Release the ME FOAs now!

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The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by Dec. 2016, but it is about to miss its first deadline. On Oct. 21st, the NIH released two Notices of Intent to publish two FOAs for ME/CFS by Dec. 2016. As of today, they

#MillionsMissing Holland gets the ear of the Minister of Health

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#MillionsMissing Holland has made its voice heard in the House of Representatives.   House of Representatives member Linda Voortman has filed questions about ME based on the protest demands with Holland’s Minister of Health, Welfare and Sport, Edith Schippers. In the letter, Voortman asks the minister of health if she is
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#MEAction Network UK: FITNET letter published in Positive Health Online

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#MEAction Network UK’s statement denouncing CBT as a form of treatment for ME has been published in the January edition of Positive Health Online today. The letter was sent in response to FITNET, a controversial study that purported children and young people with ME could be successfully treated through CBT conducted
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The PACE trial: Where “recovery” doesn’t mean getting your health back

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Do people really recover as a result of CBT and graded exercise? Sadly not, says a new analysis of PACE People with ME/CFS dream of recovery — of getting their health and lives back. So the results published by the PACE trial, showing that 22% of participants recovered after just 12
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Recent Tryptase Study Yields Potential ME/CFS Insight

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From the Solve ME/CFS Initiative: We recently highlighted a paper published online on October 17, 2016 (doi: 10.1038/ng.3696) the journal Nature Genetics, one of the most rigorous publications in the field of genetics with tantalizing findings. The paper, titled “Elevated basal serum tryptase identifies a multisystem disorder associated with increased
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Dr VanElzakker: two new ME/CFS studies at Harvard

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#MEAction recently interviewed Dr. Michael VanElzakker regarding two, new studies on ME/CFS. The first aims to discover evidence of increased activity where the sensory vagus nerve enters the brainstem – a subtle effect that requires some intricate scans. In order to measure the activity in the vagus nerve, Dr. VanElzakker will use
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