An Update from the JAX ME/CFS Center

We previously posted that the JAX ME/CFS CRC project was temporarily put on hold during the beginning of 2020 due to COVID. In August of 2020, we started receiving samples again from subjects in our ME/CFS and healthy control cohorts, and our clinical partners at the Bateman Horne Center have now finished collecting samples from time points 1 and 2, and are working on the last set, the time point 3 samples. To date, we have over 450 blood and stool samples that have been collected across the 3 time points, and will likely have close to 500 samples once we’re done collecting time point 3. In early March 2021, we began our flow cytometry experiments on all of the blood samples we have received to look for differences in the immune cells between people with ME/CFS and healthy controls. We run all time points from the same subject in one experiment so that they can be easily compared to each other. We hope to run all the blood samples through flow cytometry in the next year or so, and analyze all of the data so that we can see the functional differences between healthy controls and people with ME/CFS.

Another exciting development at our Center is that we have very recently received NIH and Institutional Review Board (IRB) approval to begin an additional collaboration with the Bateman Horne Center to collect samples from a new cohort of patients who previously had COVID-19, and have since been experiencing ME/CFS-like symptoms, or “long-COVID.” Long-COVID, or post-acute COVID syndrome (PACS), is very similar to ME/CFS, with sufferers experiencing many of the same chronic and debilitating symptoms. The goal of this new collaboration is to recruit about 40 subjects with PACS, and collect blood samples from them every 3 months over the course of the next year. We will then be able to compare the immune profiles of people with PACS to our subjects with ME/CFS to see how similar these two diseases are. BHC has just started recruiting subjects, and last week we received blood samples from our first 2 subjects, and expect to receive a few more this week. For this project, we are also collaborating with the ME/CFS CRC at Columbia University, and W. Ian Lipkin’s group will be probing the metabolome and looking at proteomic and transcriptomic data of these very same subjects. We are very excited about this collaboration, and hope that it can bring us new understanding about PACS and its relationship to ME/CFS.

Check back soon for more updates from our Center!

Solve ME/CFS Initiative Advocacy Week

Source: https://solvecfs.org

Each year, there is an ME/CFS Advocacy Week to bring awareness to this devastating disease, and many of the big advocacy groups host events that patients, caregivers, clinicians, and researchers can attend. The Solve Me/CFS Initiative just held their ME/CFS & Long COVID Virtual Advocacy Week 2021 from April 18-24th, where attendees were able to participate virtually from home. In 2021, they expanded their annual advocacy events in order to bring together advocates from many complex chronic illness communities, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS).

Videos from all of the events are now available on Solve’s Youtube Channel:
Kickoff with Rep. Raskin
Announcement of Longhaulers Act with Reps. Beyer and Bergman
EmPOWER M.E. roundtable on elevating your voice in research

They are also still encouraging people to use their Action Kit, which provides everything needed to post to social media, send customized tweets, and engage with your members of Congress about ME/CFS.

Additional Solve Sources:
Solve ME/CFS Initiative Twitter
Solve ME/CFS Initiative Facebook
Solve ME/CFS Initiative Instagram
Beyer and Bergman Legislation Press Release

Hartford Courant: Variants vs. vaccines: what to know about the race that will shape COVID-19 in Connecticut

Source: Hartford Courant

A new article by Alex Putterman about the COVID-19 variants was just released in the Hartford Courant yesterday, February 6, 2021. The variants, which include B117, B1351, and P1, or more commonly known as the UK, South Africa, and Brazil variants, are beginning to circulate in the United States. In the article, experts in the field, which include deputy director Mark Adams and ME/CFS CRC lead Derya Unutmaz, both of The Jackson Laboratory, discuss what we currently know about these variants, and how they could affect the vaccine rollout and reopening in Connecticut.

So far, Connecticut has only seen 17 cases of the UK variant, or less than 1% of total positive tests in the state, and no cases of the South Africa or Brazil variants. However, the UK strain is believed to be at least 50% more transmissible than other variants, which could complicate how quickly herd immunity can be reached. Derya Unutmaz says that, “before, let’s say we just needed to vaccinate 70% of the population and we would have been fine, now I think we need to vaccinate 85-90% of the population.”

Unutmaz also says that, importantly, the vaccines are still very effective against the new variants, and prevent severe disease. For now, it seems the best course forward is to ramp up vaccine distribution while maintaining social distancing to stop the spread of the virus.

To read the article in the Courant, click here.

The Schor Line: Working Together to Understand Long-Term Effects of COVID-19

Source: The Schor Line

A new post on The Schor Line, an NIH National Institute of Neurological Disorders and Stroke (NINDS) blog, was just published about the long-term effects of COVID-19. In the blog post, Nina Schor, M.D., Ph.D. discusses how COVID-19 patients who are critically ill are likely to take months or even years to fully recover, and how even some people who experience milder symptoms are experiencing a longer-term recovery process. Called post-acute COVID syndrome (PACS), she likens the symptoms experienced by people with PACS to those of people with ME/CFS, drawing a parallel between the two. This is very important, as many in the ME/CFS community have been concerned that post-COVID syndrome will overshadow ME/CFS when the overlap between the two is so clear.

NINDS has recently appropriated $1.15 billion in support of understanding the recovery process after COVID-19 and in developing treatments for people with PACS. Schor says that, “through these studies, we hope to identify new targets for therapies and preventive measures and to soon welcome a future in which no one must live with ME/CFS or PACS.”

To read The Schor Line post, click here.

Happy New Year from the JAX ME/CFS Team!

Happy New Year from everyone here at the JAX ME/CFS CRC! The COVID-19 pandemic has made 2020 a year unlike any other in recent history. This year has tested us all beyond measure, but has also demonstrated the interconnectedness of our world. We look forward to the coming year for generating novel findings about ME/CFS, as well as how COVID-19 is connected to this devastating disease.

In the third year of research at the ME/CFS Center at JAX, our study was halted temporarily due to COVID-19, and we took a several month break from receiving samples from individuals with ME/CFS and healthy controls from our clinical partners at the Bateman Horne Center. We started receiving samples again in July 2020, and to date we have collected both blood and stool samples for all of time point 1, and the majority of time point 2. We have also begun collecting time point 3 samples from subjects recruited early in the study. We have processed all of these biological samples for immune profiling, microbiome, and metabolism data analysis for biomarker discovery in our labs. We have recently made some exciting changes to our immune profiling panels to add additional analyses, and have begun our immune profiling experiments on our samples. Our collaborations with the Cornell and Columbia ME/CFS Centers are also running at full speed, and we are hoping to begin an additional collaboration soon with the Bateman Horne Center to collect samples from patients who previously had COVID-19, and have since been experiencing ME/CFS-like symptoms, or “long-COVID.”

As we ramp our studies back up, we are even more hopeful now that our progress will continue to accelerate into 2021 and bring many new ideas and inspiration. We wish that all of the ME/CFS community and their loved ones be blessed with laughter, peace, and love. May the magic and the wonder of the holiday season stay with you throughout the coming year, and the New Year bring you new achievements, joy, and hope!

Have a wonderful New Year, and see you in 2021!
– the JAX ME/CFS team, Derya Unutmaz, and Courtney Gunter

Webinar on Scientific Research on ME/CFS in the Age of COVID-19

Source: @CornellMECFS Twitter

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 webinar will run on October 26th, 2020, from 6:00 – 7:00 pm Eastern Time (ET). Registration for the meeting can be found here.

New Website for the US ME/CFS Clinician Coalition

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.

To visit the new US ME/CFS Clinician Coalition website, click here.

2020 IACFS/ME Virtual Conference

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Source: iacfsme.org

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.

For more information and to register, click here. 

JAX Research Highlight: Novel Antibody Tests Reveal Complexity of the Immune Response to SARS-CoV-2

bigstock-covid-ace-receptors
Conceptual 3D illustration fo SARS-CoV-2 viruses binding to ACE-2 receptors on a human cell, the initial stage of COVID-19 infection. Bigstock/Tyrannosaurus.

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.

To read the Research Highlight by Mark Wanner, click here. 

 

New Columbia CRC Study: Plasma proteomic profiling in ME/CFS

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Source: cfsformecfs.org

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.

To read the full research article in PLoS ONE, click here.
To read the blog post by Dr. Anthony Komaroff, click here.