Browse News: United States

disease-burden-vs-funding

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 ...
Zaher1

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 ...
alternative-medicine

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 ...

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 ...
mike-v-e

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 ...
21st-Century-Cures

21st Century Cures Act Passes House with Overwhelming Bipartisan Support

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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 ...
Carol Head Speech

Carol Head Named 2017 Oprah Magazine Health Hero

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Carol Head has just been honored by O, Oprah Winfrey's magazine, as one of fourteen 2017 Health Heroes, “visionaries who are healing bodies, minds, and communities.” "Although we would have preferred a more substantive piece (and inclusion of "myalgic encephalomyelitis," or ME, as our disease name)," Solve ME/CFS said in a ...

#MillionMissing Activists Meet with HHS for Follow-Up

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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 ...
Red MEAction

#MEAction US protest demands

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These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care.   You can access and download a pdf of the ...
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