ME/CFS Advocacy Call Highlights

The following is a summary of the trans-NIH ME/CFS working group call from March 17, 2020. For a transcript of the call please visit the NIH webpage here.


Beginning the call, Joe Breen, PhD highlighted various updates from our Collaborating Research Centers (CRC) at JAX labs, Cornell University, and our data managing site, RTI. Also in attendance were Walter Koroshetz, MD, Vicky Whittmore, PhD, and Leonard Jason, PhD.

Derya Unutmaz, MD and his group at the Jackson Laboratory reported higher levels of regulatory T cells in subjects with ME/CFS in their recently published paper. Regulatory T cells are responsible for maintaining the body’s immune response. However, deviations in T cell subsets can result in immune dysregulation and chronic activation of T cells. You can read their paper below.

Perturbation of effector and regulatory T cell subsets in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Maureen Hanson, PhD and her group at Cornell found distinct differences in T cell and lipid metabolism between ME/CFS cases and controls. Their data indicates possible mitochondria dysfunction in ME/CFS CD8+ T cells, observing decreased mitchondrial membrane potential and a reduction of normal glycolysis functions. You can find links to their full articles below.

Comprehensive Circulatory Metabolomics in ME/CFS Reveals Disrupted Metabolism of Acyl Lipids and Steroids

Myalgic encephalomyelitis/chronic fatigue syndrome patients exhibit altered T cell metabolism and cytokine associations

Ian Lipkin, MD and our group at The Center for Solutions for ME/CFS (CfSforMECFS) have been working on a variety of projects, one of which is looking to identify plasmic proteins in ME/CFS cases vs controls. This study confirmed that there are associations between specific immunoglobulin levels and ME/CFS. The article is pending review and will be released on our social network when it becomes available.

Other on-going studies include metagenomic analyses of saliva, blood and stool as well as our work to identify differentially expressed genes in various T cell populations.


The focus of the call was on Dr. Leonard Jason’s study, which has been widely circulated since being published in early 2020. This study examined the rates of pediatric ME/CFS cases at a community level. They concluded that 1 in 134 youth fit the criteria for ME/CFS, reporting that over 95% of these cases remain undiagnosed. Moreover, Dr. Jason and his group found that minority populations reported higher rates of ME/CFS diagnosis, which conflicts with previous research stating that this disease predominantly affects white, middle aged women. Their abstract is available here.

Our collective findings support that ME/CFS is a real, verifiable disease that impacts people from all walks of life.


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You asked, we answered!

In December 2019, we asked our audience to send us questions they would want a ME/CFS expert to answer. Here are some of the questions we received from the community:

  • Can you give us any hints as to any findings you have at the moment that you are personally excited about?
  • As work progresses will you be expanding by seeking new researchers in different fields to add to your Centers team?
  • Can you clarify for people whether you are definitely using your new technology called the VirCapSeq-Vert testing in a cohort of study?
  • Will there be the possibility of any new papers being published within a year for now and can you give us any information on which studies?
  • Has your research led you to hypothesize whether auto antibodies are playing a role in ME?
  • Can Dr. Lipkin explain the relapsing/remitting nature of M.E? I was bedbound between 1994 and 1996 and then slow recovery to nearly normal until this year when I had a major relapse that has left me housebound.

To see our previous segments, navigate to the #AskOurResearchers section on our YouTube page to view them continuously.