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ME/CFS Advocacy Down Under in 2016

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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Recent Tryptase Study Yields Potential ME/CFS Insight

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 TPSAB1 copy number,” had two key features that could be potentially relevant to ME/CFS:

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21st Century Cures Act Passes House with Overwhelming Bipartisan Support

21st Century Cures Act Passes House with Overwhelming Bipartisan Support ME/CFS advocates have been eagerly awaiting passage of the 21st Century Cures Act since it was initially introduced in 2013, given it was originally written to increase NIH funding and fast-track research and treatment development. On Wednesday, November 30, a compromise bill with modified provisions from the original 21st Century Cures Act swept the House… READ MORE

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Ramsay Award Winners and Webinar with Dr. Zaher Nahle

Do you have questions about ME/CFS research? Two weeks from today, the last webinar of this year will be held on December 15th with Zaher Nahle, PhD, MPA, vice president for research and scientific programs at Solve ME/CFS Initiative. Send your questions about upcoming research programs to [email protected] To sign up for the webinar visit: https://attendee.gotowebinar.com/register/2743000415077341956

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Australian university must not ignore evidence-based science

Australia’s UNSW is trialling an education module treating chronic fatigue syndrome patients with graded exercise therapy and cognitive behaviour therapy (GET/CBT), despite the evidence showing these therapies have no benefit and may cause permanent harm. Sign the petition!

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Thoughts on NIH speakers from Dr. Zaher Nahle

It was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.” We will not dedicate additional time to these individuals or elaborate on their misguided theories on our pages other than to make the following three points…

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Watch the Bateman Horne Center Meeting Livestream

Lucinda Bateman, MD, BHC Founder and Medical Director, is engaged in thought leadership discussions on ME/CFS and FM across the globe, traveling to several conferences in Oct. At this meeting she will will recap the information, insights, progress and promise.

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New Research Project Launches through SMCI’s Targeted Initiative Research Program

SMCI recently launched a new partnership as a component of our targeted initiative program, within our Pathways and Biomarkers Discovery Track. The project consists of original research in the areas of bioenergetics, metabolomics, and lipidomics using high-throughput technology. Importantly, this new SMCI research project relies on blood from well-qualified patients from The Levine Clinic; it also builds on recent discoveries in gut microbiome from Dr. Maureen Hanson’s lab, which uses these same patients.

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Cast your vote today help fund epigenetic research for ME

Action CIND is competing in the Aviva contest for $100,000 to advance ME and FM research in Canada. REGISTER at http://avivacommunityfund.org, CAST 18 VOTES TODAY at https://avivacommunityfund.org/voting/project/view/16-356, and SHARE contest information to help them.

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#MillionsMissing Crafts Competition

#MillionsMissing Crafts Competition We want to have fun while we work for equal treatment for ME sufferers! Win prizes! Submit photos and pattern of a crochet – or knitting project with the #MillionMissing logo. ( Also with a picture of the finished product). We pick three winners receiving a prize and they will be the designers behind #Millionsmissingnorway ‘s official patterns.

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Madness

We ask for attention and compassion with energy we don’t have. Often this is misunderstood.

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No more 'should': the aim to stop punishing myself for having ME

Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.

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