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 to fill up the time
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 sent this video
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 Research Centers to lead
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 work and 25-29
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 projects for fiscal year
The Solve ME/CFS Initiative is disappointed to report that the projected estimates for FY 17 are being reported at lower numbers than expected.
EDITOR’S NOTE: This reporting is written by Jennie Spotila Next week, the NIH will convene a peer review panel to evaluate and score the applications submitted under the Data Center and Collaborative Research Center RFAs. NIH’s management of conflict of interest is key to understanding who is – and who is not – on the
How would the proposed NIH and CDC Budget Cuts affect ME research? News organizations recently reported that President Donald Trump’s administration has asked the House and Senate to approve budget cuts for 2017 of $1.232 billion for the National Institutes of Health (NIH) and $314 million for the Centers for Disease Control and Prevention (CDC).
If the Center for Infection and Immunity (CII) team is successful with its RFA application proposal, this funding would clearly help the institution to become a Collaborative Research Center, and would help to fund the analysis work involved in the Monster study – albeit slowly. If you’ve missed it, this study is not only about microbes and viruses; it was hugely expanded to include immunology, metabolomics, proteomics, genetics and epigentics.
A person with ME for more than 38 years wrote this pointed letter to the National Institute of Health, calling its leaders to act with urgency and correct their gross neglect of people suffering with ME.
