NIH NANDSC Working Group for ME/CFS Research Report

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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

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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. 

JAX ME/CFS CRC Scientific Progress – 2019

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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.

Continue reading “JAX ME/CFS CRC Scientific Progress – 2019”

Altered microbiome composition in individuals with fibromyalgia

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First author Amir Minerbi (Source: McGill University Health Centre)

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.

Continue reading “Altered microbiome composition in individuals with fibromyalgia”