ME/CFS Alert: Interview with Vicky Whittemore, PhD

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Vicky Whittemore, PhD, of the Trans-NIH ME/CFS Working Group, was recently interviewed by Llewellyn King of ME/CFS Alert, and a video of the interview has been made available to the public. Vicky is the Program Officer for NIH ME/CFS grants, and has a number of ME/CFS grants in her portfolio that she manages the research programs for, including the three ME/CFS Collaborative Research Center grants at Cornell University, Columbia University, and here at The Jackson Laboratory.

In the interview, Vicky discusses the fact that there are a lot of triggers that can cause ME/CFS in patients, so this requires research to be done on lots of different systems of the body. Therefore, NIH has set up the Trans-NIH ME/CFS Working Group, which has representatives from each of the 24 institutes at NIH. The goal is to separate out what could be a trigger for ME/CFS, and what underlying problems could cause ME/CFS to result from these triggers for some people but not for others. NIH is dedicated to building the research field for ME/CFS, and together with researchers, are determined to find answers. Vicky and Llewellyn discuss how the grant cycles work at NIH, and what can be done to increase the number of applications for grants since NIH receives very few applications for ME/CFS grants each grant cycle.

Vicky also tells Llewellyn about how she got into ME/CFS research, more about what she does as a Program Officer at NIH, some of the progress that has been accomplished at the three CRCs, and where she thinks there will be a breakthrough in the field.

To watch the interview with Vicky Whittemore, click here. 

JAX ME/CFS CRC Scientific Progress – 2019

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Research in the ME/CFS field has implicated immune and microbial dysbiosis in ME/CFS patients, so a major goal of our ME/CFS Center at JAX is to deeply characterize patient clinical phenotypes together with immunologic, metabolic, and microbiome markers in the blood and gut. Over the course of the five year study, we aim to recruit 150 ME/CFS patients and follow them through three time points over the course of three years, where we will collect detailed clinical information, blood, and stool samples. We also aim to recruit 100 age- and sex-matched healthy controls, and 50 controls will be followed through a second time point. As we approach the end of second year of the study, we would like to share some of our progress with the ME/CFS community.

Continue reading “JAX ME/CFS CRC Scientific Progress – 2019”

Altered microbiome composition in individuals with fibromyalgia

First author Amir Minerbi (Source: McGill University Health Centre)

A new study in the journal Pain has found correlations between alterations in the gut microbiome and Fibromyalgia. Fibromyalgia, which is thought to be related to ME/CFS, is mostly characterized by widespread chronic pain, but is also marked by symptoms that include fatigue, impaired sleep, and cognitive difficulties. Fibromyalgia, like ME/CFS, has a cause of unknown origin, has no clear diagnostic tests, and most often affects women.

Continue reading “Altered microbiome composition in individuals with fibromyalgia”

ME/CFS Researcher Ron Davis Featured on CNN

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Ron Davis’ group at Stanford University recently published a small-scale, yet promising study where they developed a new blood test that they hope can be used in the future as a cost-effective diagnostic tool for ME/CFS. Using a nanoelectronic assay, they were able to identify all 20 ME/CFS patients in their study as having ME/CFS, and had no false positives in their 20 healthy controls. A feature article by Ryan Prior about Ron Davis on CNN highlights this new study while also providing an in-depth look into Davis’ day-to-day life alongside his wife Janet Dafoe, in caring for their son Whitney, who has severe ME/CFS.

Davis has led a long and successful career. After completing his post-doc at Harvard University under Nobel Laureate James Watson, his lab became a large force behind the technology that powered the Human Genome Project. Now, Davis devotes all of his time and research to solving the puzzle that is ME/CFS. In addition to searching for biomarkers in patients’ blood for diagnostic purposes, Davis is also building a team of renowned scientists to find the molecular basis for ME/CFS.

A large hurdle to solving ME/CFS is awareness of the disease. There is very little funding available to dedicate to research. Advocacy continues to be very important to generating new interest in ME/CFS, and much more research is needed to make real progress in the field. This new CNN feature article brings great awareness for the disease, and will hopefully inspire even more progress.

To read the full CNN article, click here. 

Jennifer Brea’s ME/CFS is in Remission

Jennifer Brea and husband Omar Wasow, source:

Jennifer Brea recently announced that her ME/CFS is in remission in a new health update blog! After having a total thyroidectomy last year for stage 1 papillary thyroid cancer, Jennifer’s symptoms were greatly exacerbated, and she experienced new symptoms of flaccid limbs, numb legs, difficulty speaking and thinking, and even a hard time breathing when turning her head too far to one side. A cervical collar helped ease her symptoms, which led to her receiving a diagnosis of craniocervical instability and atlantoaxial instability (CCI/AAI). Jennifer received a series of surgeries about six months ago to treat her CCI/AAI, and has had a rapid recovery of all of her symptoms of both CCI/AAI and ME/CFS.

Continue reading “Jennifer Brea’s ME/CFS is in Remission”

Frontiers Review Article: ME/CFS Syndrome in the Era of the Human Microbiome

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An interesting opinion review article was recently published in Frontiers in Pediatrics, and discusses ME/CFS research about the immune system, microbiome, metabolome, and other fields, and then uses this information to generate a hypothesis on ME/CFS symptoms. The authors also put forward some interesting hypotheses on potential new treatment approaches.

ME/CFS has been strongly linked to infectious agents, including Epstein Barr Virus (EBV), Lyme disease, Herpes Virus 6 (HHV6), and many others. But researchers have been unable to pinpoint a definite infectious agent. The primary author of the review, Amy Proal, argues that since many well-studied inflammatory conditions are now being tied to dysbiosis, or disruption, of the human microbiome, initial infection with various agents could be causing similar clusters of inflammatory symptoms seen in ME/CFS.

Continue reading “Frontiers Review Article: ME/CFS Syndrome in the Era of the Human Microbiome”

Stanford Study: Potential Nanoelectronics-Blood-Based Diagnostic Biomarker for ME/CFS


A major problem that ME/CFS patients have to endure is the lack of reliable diagnostics of the disease. Many patients suffer for years to rule out other diseases before an ME/CFS diagnosis can be established. Ron Davis’ group at Stanford University has recently published a small-scale, yet promising study to solve this problem. They report identifying ME/CFS patient samples from healthy controls, and with very high accuracy.

Previous studies have shown that there are abnormalities in many metabolic pathways in ME/CFS, so the team developed a new blood test to measure these differences. They used a nanoelectronic assay, where cells in patient blood samples are stressed using salt, and then that stress is measured by looking at the change in flow of electrical activity across thousands of electrodes. For blood samples from ME/CFS patients, the disruption to the electrical current was much larger than it was for blood samples from healthy controls. Using this significant disruption as a marker for ME/CFS, they were able to identify all 20 ME/CFS patients in their study as having ME/CFS, and had no false positives in their 20 healthy controls.

In addition to being a cost-effective diagnostic tool, the nanoelectronic assay could also be used to evaluate the efficacy of drugs that could treat ME/CFS. Hopefully, this early pilot study will soon be validated in larger patient cohorts and in other diseases.

To read the full article in PNAS, click here. 
To read the news article on Stanford’s website, click here. 

HealthRising Review of NIH Accelerating Research on ME/CFS Meeting

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Recently, the Accelerating Research on ME/CFS Meeting was hosted by the NIH in Bethesda, MD on April 4th and 5th, 2019. In addition to the two-day conference, the NIH also hosted a meeting on April 3rd, called Thinking the Future, which was a workshop designed for young/early career ME/CFS investigators to learn key networking and grant writing skills, and give presentations on their own ME/CFS research ideas. The overall goal of the three-day event was to bring researchers together to share their latest results, with the intention of driving the ME/CFS research field forward by identifying gaps and opportunities through presentations of newer research by experts as well as newcomers to the field.

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BHC: Second Annual Meeting for ME/CFS Clinician Coalition


Batmen Horne Center (BHC), our clinical core for the JAX CRC, recently held their second annual ME/CFS Expert Clinician Summit in Salt Lake City, UT. ME/CFS clinicians from all around the United States attended, hoping to grow a collaborative network of disease experts and identify ways to improve clinical care for patients suffering from ME/CFS. ME/CFS is quite common, affecting between 1 to 2.5 million Americans, yet many people with the disease remain undiagnosed or struggle to get appropriate clinical care because of harmful treatment recommendations and physicians who don’t understand ME/CFS or how to properly manage it.

The clinicians who attended the summit hope to bridge this gap in understanding by reaching consensus on clinical practices, and sharing this information on a new website so that it can reach clinicians everywhere. It is especially important to reach clinicians who are just beginning to develop expertise in treating ME/CFS, as many of the current specialists are nearing retirement age, and new clinicians are needed in the field. This effort is being led by advocate Mary Dimmock and Dr. Lucinda Bateman, who says that, “it was an honor to meet again with the ME/CFS experts to share knowledge, collaborate and seek consensus regarding our core messages and aspects of this illness. Our individual goals are varied, but we learn from each other, and hope to weave the common threads together into strong advice for clinicians, and forward progress toward much needed treatment trials.”

To read about the Summit on Bateman Horne Center’s website, click here. 

The Jackson Laboratory: Perspectives on ME/CFS

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The Jackson Laboratory has just released a new launch page on their website about ME/CFS, with the hope of increasing awareness about the disease. The page includes links to recent feature articles, including one from February 2019 that highlights the JAX CRC that’s being led by Derya Unutmaz, MD, and a Q&A with Courtney Gunter from earlier this month about the importance of science communication, especially with ME/CFS. There are also new videos that offer more information from the perspectives of the physician, the researcher, the caregivers, and the patient, as well as calls to action for donations to support ME/CFS research.

Check out the ME/CFS section of JAX’s website here.