Author: #MEAction

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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Join the #MillionsMissing Art Competition Part-Two

We’re excited to announce the #MillionsMissing Art Competition, open to all art forms, with submissions due by Jan. 6, 2017.  For all you artists itching to create your own #MillionsMissing art, now is your chance to take a crack at it and win a prize doing so. The craft competition was so popular that we

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#MillionMissing Activists Meet with HHS for Follow-Up

As reported in the August 5 update on the meeting between HHS and advocates for ME on August 1, Assistant Secretary of Health Dr. Karen DeSalvo had committed to follow up on specific actions and meet again in October. On October 24, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met again

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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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Dr. Komaroff’s Webinar Provides Hypothesis, Hot Research and Hope

Dr. Komaroff’s Webinar Provides His Hypothesis, Hot Research and Hope Link to webinar: https://youtu.be/ENrdrGj0p-c by Darla N. In a webinar the Solve ME/CFS Initiative hosted on Nov. 10, Dr. Anthony Komaroff presented his hypothesis on ME’s cause and five popular areas of current ME research. Komaroff, Simcox-Clifford-Higby professor of medicine at Harvard Medical School and senior

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