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Solve ME/CFS Initiative Update

Last year was a pivotal point in the battle against ME/CFS. Game-changing reports from the Institute of Medicine and the National Institutes of Health’s Pathways to Prevention Workshop delivered long-awaited public credibility for our disease. The federal ME/CFS landscape has shifted, and there is newfound openness and awareness among key governmental agencies. This positive change has heightened the battle as we fight for scientific understanding, fight for treatments and fight for a cure.

WHY WE FIGHT FOR
UNDERSTANDING
“I am very angry that ME/CFS is not more recognized, and I’m embarrassed to tell people that I have it because I’m afraid of how they will react… If only people would understand and treat us the same as they would if we told them we had MS or Lupus, or any other recognized illness.”

—Lisa, patient

The Solve ME/CFS Initiative has been fighting for patients of this insidious disease for many years, and we recognize that progress has been slow. Insufficient federal funding, the complexity of the disease and disbelief are all obstacles that have thwarted progress.
Building on 2015’s momentum, we are increasing our efforts; we are fighting harder today than ever before. We are fighting relentlessly for patients like Lisa, Chris and Connie.

We are fighting for YOU by:
Taking a Leadership Role with the NIH
We are working to increase medical research spending on ME/CFS at the National Institutes of Health (NIH). We’ve initiated discussions with NIH staff about the ME/CFS study protocol and research team composition to ensure that the NIH’s work results in credible, replicable research that will move the science forward. We hold a seat on the Chronic Fatigue Syndrome Advisory Committee, which makes recommendations to the NIH regarding ME/CFS.

Sponsoring and Generating New Research
We are currently supporting four early stage pilot studies, as discussed in our most recent publication The Chronicle:

  • A study with promising preliminary results for a potential ME/CFS biomarker
  • An autoimmune dysfunction study that has identified elevated levels of previously unknown antibodies in ME/CFS patients
  • A genetic analysis exploring the possible hereditary aspects of ME/CFS
  • A study investigating the compromised immune system in ME/CFS patients.

We are pleased to announce the launch of our 2016 Ramsay Award Program that reflects the latest advances in ME/CFS science. Our goal is to fund three to four new research grants and draw investigators into the ME/CFS field.

Dr. Nahle, our Vice President for Research and Scientific Programs, has formed partnerships with Metabolon, a health technology leader, the Memorial Sloan Kettering Cancer Center and with Dr. Susan Levine’s ME/CFS clinic in New York to facilitate our own targeted research initiatives. These research studies are scheduled to commence in the late summer.

WHY WE FIGHT FOR TREATMENTS
“My friends are fully engaged in active lives while I am on the sidelines feeling sick most of the time with swollen glands, headache, sore throat—it’s like having the flu 24/7. I want some effective treatments in my lifetime.”

— Chris, patient

Engaging & Informing the ME/CFS Community
Research 1st, our monthly electronic newsletter, and the Chronicle, offered as a service at no charge, keep the ME/CFS community informed on research and other developments relevant to ME/CFS.

Our website, Humans of ME/CFS (HOMECFS.SolveCFS.org), gives voice to patients and their stories, helping to reduce the isolation felt by so many. Additionally, we initiated the US Action Working Group, a coalition of ME/CFS stakeholders formed to create a unified front for our community in advocacy efforts.

Advancing the Discourse on ME/CFS
Dr. Nahle is a member of the Centers for Disease Control and Prevention’s Technical Development Workgroup on ME/CFS, and we are actively advocating with Congress members on behalf of ME/CFS patients. Dr. Nahle’s frequent opinion pieces in Research 1st and the Chronicle also help to guide the ME/CFS narrative.

Will you join us in our fight? Your donation today will continue our important work and bring hope to so many who suffer. Please go online at SolveCFS.org/donate to make your tax-deductible donation.

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