AAEM 2019 Fall Conference on Fatigue: A Complex Diagnosis and Treatment Dilemma

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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.

Click here to register for the livestream. 

Frontiers Editorial: Advances in ME/CFS Research and Clinical Care

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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.

To read the editorial and find links to the ME/CFS Frontiers articles, click here. 

NIH NANDSC Working Group for ME/CFS Research Report

Stephen Roberds, PhD, Chair of the ME/CFS Working Group

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.”

To read the NANDSC Working Group for ME/CFS Research report, click here. 
To watch the video of the NANDSC meeting, click here. 
To read more about what the report means on Health Rising, click here. 

Government of Canada Invests $1.4M in ME/CFS Biomedical Research


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.

To read the Press Release, click here.
To learn more about CIHR, click here.

3rd Annual Community Symposium at Stanford University

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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.

For more information about the Symposium, click here.
To register to attend the meeting in person, click here. 
To register to attend the meeting via livestream, click here. 

Upcoming CDC ME/CFS SEC Conference Call

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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.

To view the event on the CDC’s website, click here. 

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.