We are excited to start a new educational series on explaining our approaches in biomedical research, which we hope will be useful to the ME/CFS and chronic illness community; both to patients as well as physicians.

For our first topic, we have chosen to explain Flow Cytometry and FACS (Fluorescence-Activated Cell Sorting). This will be a mini-series of several blog articles, and is not intended to be too detailed or to serve as an academic introduction, as there are many videos and introductions online that serve that purpose. Instead, we hope to provide a sense of what Flow Cytometry is and how we use it in our research at the JAX CRC.

So why start with Flow Cytometry? For immunologists like us, this instrument is indispensable because we deal with complex mixtures of cells from blood or tissues, and flow cytometry allows us to determine the composition, frequency, and function of each of these different cell types. By identifying specific cell types, we are then able to sort these cell types into pure populations that we can use in downstream experiments or interrogations. Indeed, this technology can sort out any type of cell (even including bacterial cells), provided there is a probe you can use to specifically identify them.

Figure 1. Pictorial of a cell sample moving through the flow cytometer, with cells being sorted based on the fluorescence color they emit, and all the data captured by a computer. FSC is Forward Scattered Light, and SSC is Side Scattered Light. Continue reading “Approaches in Biomedical Research: Flow Cytometry, Part 1” →

Last week, the NY Times published an opinion piece written by Elliot Kukla, an openly transgender rabbi, who says that despite being used to feeling judged and rejected, he feels like even more of an outsider because of his ME/CFS, fibromyalgia, and complex migraines.

“Think about that for a moment: Approximately 0.6 percent of American adults identify as transgender, just under 0.2 percent of the world population is Jewish, and 100 percent of us will get sick, yet it is being chronically sick that makes me feel like an outsider. That’s how much our society fears and rejects the core human experience of being ill, of having a body that gets sick, that ages, that is not controllable.”

Read the full piece on the New York Times’ website. 

MedPage Today published an article last week about the grants for the NIH-funded ME/CFS Centers, including the one at The Jackson Laboratory.  In the interview, NIH Director Francis Collins discusses some of the history of the ME/CFS field, and how studies in the past brought false hope to the patient community because what seemed like great advances at the time were in fact unrelated to the disease. He is hopeful however that the three centers will bring new ideas and enthusiasm to push for progress in understanding this disease. It appears ME/CFS is garnering more attention, both from funding agencies and the scientific community, in hopes that this serious disease can be solved.

To read the full article on MedPage Today, click here. 

The Bateman Horne Center has posted their winter 2018 class schedule for information on ME/CFS and Fibromyalgia. The classes include topics such as Getting the Right Diagnosis, Widespread Pain, Restorative Sleep, and many more. All classes are offered in-person at the Bateman Horne Center, located in Salt Lake City, UT.

Click here to view and register for winter 2018 BHC Education Classes. 

BHC Blog
BHC Facebook Page
BHC Youtube Channel

A new article recently posted on Independent documents ME/CFS through the lens of Jen Brea’s Unrest. The struggles that patients face and the historical significance of disbelief surrounding the disease are discussed in-depth by Nathalie Wright.

“Unrest has recently been shortlisted for an Oscar. The power of documentary film is that viewers are confronted by what is unseen – or ignored; it is a medium that conveys something words cannot. Maybe, finally, [ME/CFS] patients are beginning to be seen.”

Read the “long reads” article on Independent’s website here. 

The Open Medicine Foundation has just announced the formation of an ME/CFS Collaborative Research Center at Stanford University, led by Dr. Ron Davis. OMF will be funding the first year of research at the center, after receiving $1 million in Bitcoin donations, thanks to the generosity of the Pineapple Fund and patient supporters. OMF is also actively fundraising to support the remainder of the research, which is estimated to take another four years.

Dr. Davis, a Professor of Biochemistry and Genetics at Stanford University, develops new technologies to do cutting-edge research on a variety of topics, including cancer, immunology, infectious disease, and genetics. His current mission is to discover the cause of ME/CFS, and develop a diagnostic test and cure for the disease.

Open Medicine Foundation is actively involved in social media and the patient community, and news related to the Stanford CRC can be found in several locations:

OMF Facebook
OMF Website and Stanford CRC Announcement
Signup for OMF Newsletter

In heartbreaking news, Anne Örtegren, a Swedish activist and ME/CFS patient, has recently chosen to end her life. She had been suffering greatly from this terrible illness, and chose to end that suffering. Anne was well-known in the patient community, and often wrote for HealthRising. Before her assisted suicide, she wrote a farewell post, explaining how her illness had dramatically changed her life and why she made this  extremely final decision. We are terribly shaken and sorry to learn of her passing. This is a reminder to all of us – scientists, physicians, funding and government agencies, that ME/CFS can no longer be neglected! Anne will be remembered for her courage, and her memory will remain as a reminder of what we are fighting for. Rest in peace, Anne.

Click here to read her farewell post on HealthRising’s website.

Starting this month, we will be beginning a monthly spotlight series of “People in ME/CFS Research.” The first spotlight for January 2018 is on Derya Unutmaz, M.D. Derya is a Professor of Immunology and the Principal Investigator for The Jackson Laboratory ME/CFS Collaborative Research Center. His lab researches the mechanisms of the human immune system in the context of infectious or chronic diseases, cancer, and aging. Recently, I (Courtney) sat down with Derya to ask him some questions about his background and his involvement in ME/CFS – below are his candid responses.

Hey, Derya! Thanks for taking the time to speak with me today. First of all, tell me a little bit about yourself and how you got involved in researching ME/CFS.

Thanks for talking with me, Courtney! I’m currently a Professor of Immunology at The Jackson Laboratory for Genomic Medicine. I’m also affiliated with the UCONN School of Medicine, and I study the human immune system. Before coming here, I was a Professor at the NYU School of Medicine, where I worked for about 8 years. I originally started my lab at Vanderbilt University in Nashville, TN about 20 years ago. Throughout my career, I’ve always been interested in understanding how the immune system works, and specifically trying to understand the immune system in the context of different diseases.

Continue reading “Scientist Spotlight: Derya Unutmaz, M.D.” →

The ME/CFS CDE Working Group and the National Institute of Neurological Disorders and Stroke (NINDS)/Centers for Disease Control and Prevention (CDC) CDE Team has recently released a draft version of the ME/CFS CDEs for public review, which has been divided into eleven subgroups covering baseline information and details about a variety of symptoms.

The CDE Working Group has opened up a public review period, and are asking that reviewers look at the CDEs and make comments on any portion of the recommendations based on their expertise. Comments can be sent by email to NINDSCDE@emmes.com, in the provided template response spreadsheet, or via annotations within the documents.

NINDS has stated that after the public review period, the ME/CFS CDE Working Group will review and revise the recommendations as needed, and version 1.0 of the ME/CFS recommendations will be posted at the end of February 2018.

To review the CDEs and comment or make recommendations, click here. 

The deadline for commentary on the CDEs is January 31, 2018.