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.
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.
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.
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.
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.
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.
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.