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Category Archives: NIH

Alphabet Soup – Your Guide to Current U.S. Actions

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When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory ...

NIH Creates Council to Advance ME Research

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The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The committee, called the NANDS Council Working Group for ME/CFS Research, will be comprised of scientists, clinicians, representatives from advocacy organizations, and individuals with ...

The NIH responds to #MEAction, Next Steps

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Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins (see letter). Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting ...

Ron Davis Receives $2.5 Million Grant from NIH

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Dr Ron Davis and his team at the Stanford Genome Technology Center have received a large research grant from the National Institutes of Health (NIH) that will fund research for 5 years at $500,000 a year and will involve 15 collaborators, 9 of which have never worked in the ME/CFS field before ...

U.S. House of Rep. Supports More Funding for NIH

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We applaud the U.S. House of Representatives for its support to increase funding for the National Institutes of Health (NIH). Last week, the House Appropriations Committee released its draft funding bill that raises spending for the NIH by $1.25 billion (3 percent) to $38.3 billion in 2019. Year-by-year, the NIH budget increases, and, year-by-year, the ...

Make yourself Heard before U.S. Health Officials – Submit your Comment to CFSAC by June 13

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You showed up for #MillionsMissing, now is the time to show up before our federal agencies to demand that they take urgent and strategic action for people with Myalgic Encephalomyelitis. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its bi-annual meeting on June 20th and 21st, and we need ...

Thousands sign letter to be delivered to Francis Collins

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On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments. We are demanding urgent action to increase funding for research, find a diagnostic test, support clinical trials, and develop treatments, and a meeting to discuss all this with NIH Director Francis Collins. We also ...

The NIH Plan for ME is Dismal

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Occupy M.E. describes the NIH's current plan to address the crisis of Myalgic Encephalomyelitis as "do a little and wait." Blogger Jennie Spotila describes the agency's plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative ...

Why we’re Targeting the NIH for #MillionsMissing

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    The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans - estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to ...

NIH announces centers for ME/CFS research

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The NIH announced the grants for three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC) that will work together as a consortium for ME/CFS. These grants will be managed by National Institute of Allergy and Infectious Diseases and National Institute of Neurological Disorders and Stroke. The total cost of the ...