January 17, 2020
CDMRP Funding Announcement Comes Just 24 Days After Congress Opens Potential $350 Million to ME/CFS Researchers
As we announced earlier this week, the two-year effort by Solve M.E. to add ME/CFS as an eligible topic area for the Peer Reviewed Medical Research Program (PRMRP) is a success!
This program will receive $350 million in 2020 and ME/CFS will compete with 43 other diseases for over 100 grants in 5 program areas. These areas are:
- Clinical Trial Award
- Discovery Award
- Focused Program Award
- Investigator-Initiated Research Award
- Technology/Therapeutic Development Award
Now, just 24 days after the signing of the FY20 Defense Appropriations Act that designated ME/CFS as a Congressionally Directed Topic Area and eligible for funding, grant award pre-announcements have been released!
Last year, the program funded 107 awards! Read more about the PRMRP funding opportunities here. Please share this news far and wide with other community members, academics and scientists, particularly those who might apply for the potential $350 million in research funding.
Let’s bring home the dollars for ME/CFS research!
For the Full “MECFS Committee Report Language”, click here:
Health Rising Cites Advances by Solve M.E.,
Ramsay Grant Program Researchers in Year-End Overview
ME/CFS journalist Cort Johnson looks back at the most significant developments of 2019
In his annual overview of the ME/CFS landscape, Health Rising editor Cort Johnson takes a “big picture” approach to some of the most newsworthy events and discoveries of 2019. Solve M.E. figures prominently in “The Best, Most, Strangest and the Worst of 2019 in ME/CFS and Fibromyalgia,” topping several categories, including:
- Best New Tool to Advance ME/CFS:
Solve M.E.’s You + M.E. Registry and Biobank
- Most Exciting New Pilot Study:
Liisa Selin and Anna Gil’s 2019 Ramsay Research Grant-winning study “Altered T cells in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”
- The Most Fundamental Finding Award:
Solve M.E.-funded metabolomics study “Prospective Biomarkers from Plasma Metabolomics of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Implicate Redox Imbalance in Disease Symptomatology” (Arnaud Germain, David Ruppert, Susan M. Levine and Maureen R. Hanson)
- Best New Entry in the Field:
2019 Ramsay Grant co-investigator Dr. Kenneth Kwong, who Johnson names as particularly notable for his role as “creator of the functional MRI.”
- Most Unlooked For – But in Retrospect, Most Logical – New Subset:
Johnson applauds Solve M.E. Ramsay Grant Researcher (and person with ME/CFS) Dr. Camille Birch for the discovery of gene mutations in people with ME/CFS in her Ramsay-supported whole genome sequencing study.
Read Johnson’s complete 2019 overview here.
Pre-Register Now for the ME/CFS Genome Study
The UK-based ME/CFS Biomedical Partnership is planning to do a genome wide association study on 20,000 people. When the study is launched, many volunteers will be needed.
Stay updated on the study and sign up for the mailing list here.
New York Times, Other International Outlets Pick Up
AP Story on NIH Intramural Study
ME/CFS made national headlines last week when an Associated Press (AP) story on the NIH Intramural study was picked up by multiple national and international outlets; reaching millions of readers and viewers. Lauran Neergaard’s article “Patients Push Limits or Clues to Chronic Fatigue Syndrome” profiled ME/CFS patient Zach Ault (pictured above) as he took part in the study at the NIH campus in Bethesda, MD.
Solve M.E. Chief Scientific Officer Dr. Sadie Whittaker was quoted in the article, speaking to the unique value of the NIH study.
While the article does not address the fact that we desperately need more funding and research by the NIH, the wide syndication of a factually-accurate article about ME/CFS is a win for ME/CFS awareness.
This mainstream media coverage validated the reality of ME/CFS and showed that the NIH thinks ME/CFS is real too! Millions will be educated and the publicity will be a vital tool to share with skeptical medical providers, political leaders, and family members.
Read the article in its entirety here.
In Memoriam: ME/CFS Community Members
Cindy Siegel (Shepler), Dr. Marcie Lynn Zinn
Our community recently lost two beloved members, Cindy Siegel (Shepler) and Dr. Marcie Lynn Zinn, both of whom had ME/CFS.
The information below is from their memorial notices.
“Cindy Siegel (Shepler) lived and loved her new life in the City by the Bay and relentlessly pursued medical answers while there. By 1993, in her mid-30s, the lack of adequate treatment forced her to leave a successful life and career in the healthcare industry and return to her hometown of Knoxville. Please be aware of this devastating disease and show compassion when you encounter people who have it – they are most likely much more ill than you realize. And when you have the opportunity, please let your healthcare providers and government officials know that people with ME/ CFS desperately need their help.”
“Marcie Lynn Zinn enriched the lives of so many people with her commitment, strong personal background, and abundance of caring. To celebrate her life, please share your heartfelt words of support, personal memories and photos you may have of Marcie at the link below.”