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.Continue reading “The Atlantic: Post-COVID-19 symptoms similar to ME/CFS and can continue for months”
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.
We are very excited to have just posted the full preprint of our new ME/CFS immune profiling paper on BioRxiv, which will continue to be updated following reviewer comment and peer-review. In this detailed study, we analyzed the immunological differences between ME/CFS patients and healthy controls within a large cohort and found several major differences in T cell subset frequencies and functions between the two groups.
On October 17, 2019, the NIH hosted a webinar to update the community on their efforts to advance research on ME/CFS. The webinar, which was live-streamed via WebEx, featured the Chair of the NANDS Council Working Group for ME/CFS, Dr. Steven Roberds, PhD, who summarized the ME/CFS research findings that the Working Group presented to the NANDS Council about a month before. The video of the webinar as well as the transcript have now been posted on the NIH’s website.
The update included details about initiatives that are currently in progress at the NIH, including the efforts that NIH is making to encourage new research topics about ME/CFS and coordinating research on overlapping conditions, encouraging general outreach as well as outreach for scientific endeavors such as conferences, setting up an inter-agency Working Group, and identifying gaps in the field. That next step that the NIH plans to take is to develop a strategic plan which clearly states the process the NIH will use to fill the numerous needs in this field.
An interesting webinar featuring Amy Proal, PhD, of Microbe Minded was hosted a few weeks ago by Solve ME/CFS Initiative (SMCI), and the video was later posted on their Youtube channel. Amy, who was recently awarded a Ramsay grant from SMCI for her research, also published an article in Frontiers in Pediatrics in December 2018 about ME/CFS. The SMCI webinar focuses on the Frontiers article’s theory that chronic symptoms in ME/CFS are driven by the presence of persistent pathogens that affect the metabolism, gene expression, and immune system.
Amy describes how she considers ME/CFS to be a polymicrobial disease, in that pathogens associated with disease live as part of the complex microbiome communities in the body and interact with these communities to push other members of the microbiome into dysbiosis, which in turn causes symptoms. Amy believes that this can cause a snowball effect where successive infections with different pathogens build on each other to ultimately cause disease, and that this model could also explain why when presented with the same pathogen, some people develop ME/CFS while others don’t. She also discusses how recent Alzheimer’s research that explores new treatment possibilities could also be beneficial to people with ME/CFS.
JAX CRC investigators Derya Unutmaz and Julia Oh have written a Science Immunology perspective review on two exciting articles that have just been published in Science, which show very close interactions between an immune cell subtype called mucosal-associated invariant T (MAIT) cells and the microbiota. MAIT cells are a special type of T cell that are stimulated by vitamin B2 derivatives that have been produced by bacteria, and it is thought that MAIT cells control the immune response to bacterial, fungal and even some viral infections.
On October 10-13th, 2019, the American Academy of Environmental Medicine (AAEM) is sponsoring a four-day conference in Lexington, KY. The conference, which has a different focus each year that relates to environmental medicine, is called “Fatigue: A Complex Diagnosis and Treatment Dilemma,” and is largely focused on ME/CFS. The presenters, who are mostly physicians, will cover a wide variety of topics relevant to ME/CFS and other forms of fatigue, and include Dr. Nancy Klimas, who will talk about her work using systems biology to study how the autonomic nervous system and immune system interact in ME/CFS. Other speakers include Dikoma Shungu, PhD, of the Cornell CRC, who will discuss the role oxidative stress in the brain plays in ME/CFS, and Dr. Lucinda Bateman, MD, of the JAX CRC clinical core, who will discuss how physicians can assess the ME/CFS core symptoms by using measurements such as Hours of Upright Activity (HUA) and orthostatic testing to aid in diagnosis and treatment of patients with ME/CFS.
The entire AARM four-day conference is available to livestream, and video will be made available on each day of the livestream through November 25th. Each day of the conference costs $50 to access.