On October 26th, our collaborators Maureen Hanson of the Cornell CRC and W. Ian Lipkin of the Columbia CRC, plus Avi Nath from the NIH, will be presenting as part of a panel hosted by the New York State Department of Health (NYSDOH). The presenters will be sharing current research on ME/CFS in the age of COVID-19.
The US ME/CFS Clinician Coalition, which was formed in 2018 by a group of American ME/CFS expert clinicians, has recently released a 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.
The goals of the Coalition, which include advocate Mary Dimmock and clinician Dr. Lucinda Bateman, are to improve clinical care for ME/CFS patients by promoting best clinical practices, expand the pool of medical providers with ME/CFS expertise, and provide clinical insights to scientists to accelerate and promote advances in research. The website includes a section about what ME/CFS is and also has a guide for clinical management of the disease, plus it includes a section where providers can find Continuing Medical Education (CME) courses and other educational resources about ME/CFS.
On August 21st, 2020, the Renaissance School of Medicine at Stony Brook University is hosting the 2020 International Association for Chronic Fatigue Syndrome/Myalgic Encephelomyelitis (IACFS/ME) virtual research conference. The conference, which is targeted towards biomedical and behavioral professionals, will focus on biomedical, public health, and behavioral aspects of ME/CFS and associated comorbidities. A portion of the meeting will also be devoted to COVID-19 and its relevance to ME/CFS research and clinical care. Continuing medical education credits for physicians and nurses will be provided.
The presenters will cover a wide variety of topics relevant to ME/CFS, including how immunological, autonomic, and metabolic dysfunction contribute to the pathophysiology of ME/CFS and might serve as biomarkers, how integrated, cross-disciplinary, and international research/clinical networks might accelerate clinical and scientific progress, and will discuss insights from patients developing ME/CFS after COVID-19 infection.
The Zoom-style meeting will run from 10:00 AM to 3:30 PM EDT, and will be recorded so people unable to attend live may watch it afterwards.
JAX investigators in the lab of Derya Unutmaz recently submitted an article for publication about a new assay that determines how well anti-SARS-CoV-2 antibodies are able to neutralize binding with ACE-2, the human receptor for the virus. The article is now available as a preprint on medRxiv.
Mark Wanner has also released a Research Highlight article on the Jackson Laboratory website, where he explains the study in detail and speculates on what the findings could mean in terms of determining disease susceptibility and progression in patients. This new assay may help aid in understanding the quality or duration of the antibody response during COVID-19, and have important implications in public health and vaccine effectiveness.
W. Ian Lipkin and our collaborators at the Center for Solutions for ME/CFS at Columbia University recently published a new article in PLoS ONE on July 21, 2020 on plasma proteomic profiling in ME/CFS. The study looked at 39 ME/CFS patients and 41 healthy controls, and found a significant association between ME/CFS and immune dysregulation. The group was able to use a machine learning classifier to differentiate between ME/CFS patients and healthy controls with a high degree of accuracy, so the study highlights the potential use of the plasma proteome as a source of biomarkers for ME/CFS.
The Center for Solutions also just released a blog post about the study, which was written by Dr. Anthony Komaroff and discusses the implications of the results. Dr. Komaroff explains what proteomics is, and what the results of the study mean for ME/CFS and potential research and treatments in the future.
Like much of the rest of the world, the ME/CFS CRC at The Jackson Laboratory has been shut down since mid-March of this year because of COVID-19. Since that time, we have not been able to receive or process any ME/CFS patient samples. Some JAX employees have stayed on-site during the shutdown, but their work has focused entirely on COVID-19 testing and research.
The COVID-19 pandemic is likely to make a major impact on ME/CFS disease. Viral infections have long been suspected to be a trigger of immunological events that may lead to ME/CFS. There are now worrying reports of people with COVID-19 that have symptoms reminiscent of ME/CFS, months after viral clearance.
Talented Atlantic writer Ed Yong recently wrote an article in The Atlantic about “COVID-19 long-haulers,” or the people who have been experiencing months of cyclical, debilitating symptoms after being infected with the virus. Many of these long-haulers were previously young and healthy, but have experienced weeks of fever, delirium, and crushing fatigue following infection. Despite these extreme symptoms, because what they’re experiencing differs from the typical COVID-19 illness profile, they have been told that it’s all in their heads. Online support groups host thousands of people who have been dealing with severe COVID-19 symptoms for at least a month, if not longer.
On March 17, 2020, the NIH hosted a call to update the community on their efforts to advance research on ME/CFS. The advocacy call featured updates from Dr. Joe Breen on what each of the three CRCs have recently been working on, plus Data Management initiatives from the ME/CFS Consortium, and from Vicky Whittemore on the Trans-NIH ME/CFS Working Group and implementation of the Council’s Working Group Report. The webinar also featured Dr. Leonard Jason, who discusses his recent work published in the journal of Child and Youth Care Forum on the prevalence of ME/CFS in children. The audio of the advocacy call as well as the transcript have now been posted on the NIH’s website.
A new spotlight interview featuring Dr. Lucinda Bateman was recently posted by Dylan Murphy of #MEAction. Dr. Bateman, who is part of our clinical core at Bateman Horne Center (BHC) for the JAX CRC, is the founder and Chief Medical Officer of BHC, and has treated over a thousand ME/CFS patients since 2000.
In the interview, Dr. Bateman discusses how she first got involved in treating and researching ME/CFS and what research BHC is currently doing. She also explains the BHC Biomarker Research Project and how biomarkers can help to progress the field, in addition to aiding in providing an easier path to diagnosis for patients. She also discusses the need to prioritize a trial of low dose Naltrexone as a treatment option for people with ME/CFS, and explains what Naltrexone is and how it can help patients. In terms of the lack of compassion that ME/CFS patients often experience from their healthcare professionals, Dr. Bateman says that, “the most obvious barrier to compassionate care is incomplete comprehension of the illness and its consequences. We can hope that research progress, stronger biomarkers and scientific support will start to replace this ignorance with knowledge.”
On February 13, the CDC will hold an ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call to briefly update the community on the CDC’s ME/CFS efforts, followed by a live Q&A session. The conference call will specifically feature updates from Dr. Elizabeth Unger, Chief of the Chronic Viral Diseases Branch at CDC. The call will be held from 3:00 – 4:00 pm ET.
The conference call can be accessed by dialing 1-888-603-7036 and using the participant code CDC MECFS. A transcript will be made available following the call. To sign up to be notified of future calls, send an email to MECFSSEC@cdc.gov.