Category Archives: United States

GBD-Compare

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 ...
dr-collins

Send TGIF Letters to Francis Collins

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Friday Letters to Francis Collins ...
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 ...
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Register your comment for the upcoming CFSAC meeting!

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The CFS Advisory Committee want to hear from YOU! ...

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 ...
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