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.
An interesting and informative editorial was recently published in Frontiers in Pediatrics, and discusses advances in ME/CFS research and clinical care. The authors, which include Dr. Lucinda Bateman, MD, who is part of our clinical core at Bateman Horne Center for the JAX CRC, present an in-depth view of the research that is being done in the ME/CFS field, and the patient care issues that are also being addressed.
The authors delve into the history of how different groups have informed the US Department of Health and Human Services (DHHS) through the years about ME/CFS, including the Chronic Fatigue Syndrome Coordinating Committee and the Chronic Fatigue Syndrome Advisory Committee (CFSAC). However, the charter was recently not renewed for CFSAC. The editorial also discusses how there are very few ME/CFS physicians, and because there are no diagnostic tests or treatments for the disease, the physicians that do treat ME/CFS patients are forced to rely on symptoms to guide their treatment, and typically focus on attempting symptomatic relief.
Despite these obstacles, there are many researchers, clinicians, and caregivers who are working to advance the science and treatment for ME/CFS. The authors outline a monograph of recent articles in Frontiers in Pediatrics that cover a wide range of issues encountered in ME/CFS, including a brief history of the struggle for disease recognition, the need to identify a cause or trigger, which symptoms best characterize the disease, the range of current ongoing ME/CFS laboratory and clinical research, and guidance to primary care physicians in diagnosing and managing ME/CFS patients. Next, researchers and clinicians are writing articles on “ME/CFS—The Severely Affected,” which will provide a description of ME/CFS throughout the range of its severity. It has been difficult to acknowledge the challenges faced by people with severe ME/CFS, so this coming issue will address this unmet need.
On September 4, 2019, the NANDSC Working Group for ME/CFS Research report was presented by Stephen Roberds, PhD, the Chair of the ME/CFS Working Group, to the National Advisory Council (NANDSC), which must approve all NINDS grants, initiatives and projects. The report, which details the need for an ME/CFS research strategy, was put together by the ME/CFS Working Group, which is comprised of 15 members, the majority of whom are experts in the ME/CFS field. The Council then voted to approve the report, showing their unanimous agreement that a lack of knowledge exists regarding the underlying biological mechanisms of ME/CFS, and a strategic research approach is needed.
The approval of the report will give the Trans-NIH Working Group for ME/CFS access to new resources at the NIH. In an article about the report on Health Rising, Cost Johnson says, “While the approval of the ME/CFS report provides no new funding for ME/CFS, it may very well provide the necessary next step for a major increase in funding. That next step is an NIH-produced strategic plan which clearly states the process the NIH should take to fill the numerous needs in this field. NANDSC’s approval of the report legitimized the many needs facing ME/CFS and gave Vicky Whittemore and the Trans-NIH Working Group access to the resources at the NIH needed to produce the strategic plan.”
In a recent Press Release published on August 22, 2019, it was announced that the Government of Canada, through the Canadian Institutes of Health Research (CIHR), is investing $1.4M in ME/CFS research. The Honourable Ginette Petitpas Taylor, Minister of Health, made the announcement together with Dr. Alain Moreau, a professor at the University of Montreal. Dr. Moreau will lead a new national network headquartered at Sainte-Justine University Hospital Research Centre in Montreal, and which will be comprised of more than 20 researchers, plus patient partners and clinicians.
The network hopes to create critically needed scientific knowledge about the causes of ME/CFS, and work towards potential treatments for the disease. In addition to searching for the causes of ME/CFS, the network will also work to link cohorts of patients and researchers in Canada and the US, which will enable investigators to share samples, data, and methods, and allow them to work together to further ME/CFS research.
On September 7, Stanford University will hold their 3rd Annual Community Symposium on the Molecular Basis of ME/CFS. The symposium, which is sponsored by Open Medicine Foundation (OMF), will be held at Stanford University, and serves as “a unique and up-close opportunity to learn from and interact with world-class scientists.” The event will also feature ME/CFS expert guest speakers from all over the world, including Maureen Hanson from the Cornell CRC and Ron Davis from Stanford University.
The symposium will be held from 9:00 – 5:00 pm PT, and will also be accessible via livestream the day of the event. A recording will be made available on OMF’s YouTube channel following the symposium.
On September 16, the CDC will hold an ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call to update the community on the CDC’s ME/CFS efforts, as well as to hear thoughtful feedback about the current efforts and research from the community. The conference call will also feature guest speaker Dr. Anthony Komaroff, MD, who will give a talk on “The Biology of ME/CFS: Emerging Models.” The call will be held from 3:00 – 4:00 pm ET.
The conference call can be accessed by dialing 1-888-989-4409 and using the participant code 8773805, or by viewing the meeting in webinar format at https://adobeconnect.cdc.gov/r4wnwwqqzvs0/. Note that questions for the CDC and guest speaker must be submitted in advance by emailing them to MECFSSEC@cdc.gov.