USA: JAX ME/CFS Center and Derya Unutmaz news

Andy · Apr 28, 2021

March 18 Scientist spotlight - Peter Robinson

Hi Peter! Thanks for meeting with me and answering some questions. So, you’re an MD, but you’re currently doing research. Can you tell me a little about your background and how you ended up at JAX?

Hey, Courtney! So, when I was in college, I studied Mathematics and Computer Science. I was actually accepted into a couple of PhD programs in Computer Science, but my father, who was a physician, said “why don’t you study medicine?” After a couple of conversations about it, it seemed like a good idea, so I kind of switched and wound up studying Medicine at UPenn [University of Pennsylvania]. I then did what in America would be called a residency, in Pediatrics in Germany at the Charité University Hospital. During that time, my original plan was to be a clinician. But then I got involved in a research project in genetics and diagnostics of Marfan Syndrome and Neurofibromatosis, and I just developed an interest in genetics. So, after I finished the residency, I switched to the Genetics Department of the hospital, and for the first time was doing mainly research instead of being a clinician. Sometime after I made the switch, by chance my wife was between jobs. She’s an Ophthalmologist and she was doing her Master’s in Medical Informatics, so she said, “hey, can you help me with this homework? I have to program something in Java,” so I started helping and I was like, “wow this is a lot of fun!” So anyway, I heard there was the field of Bioinformatics, and I looked that up and said, “hey this would be perfect for me.” So, I studied Computer Science via the internet at Columbia University and I got a diploma in it in 2004. Then one of my mentors in Germany sort of financed a Master’s student, so we did the first bioinformatics project together, and that resulted in a publication in Human Molecular Genetics, which is quite a good journal. And every year I added another person to the group and ended up with a pretty big group.
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https://jaxmecfs.com/2018/03/29/scientist-spotlight-peter-robinson-m-d-m-s/

Trish · Mar 29, 2018

Going off of that, what exactly will you be doing for the ME/CFS project?

So, the clinical data captured from the project will involve a series of yes/no questions, or a series of numbers. So if you have a yes/no question such as “did you have a fever in the last 7 days?” then that means you can divide your entire patient group into two cohorts, those that had fever and those that didn’t, and then you can do an association test. So, you can test an association with any of the things you can measure, like gene expression or immune activation. And this is fine for some clinical questions, but it’s not obvious how to create a profile for related signs and symptoms, as ME/CFS is a very complicated disease with manifestations in the neurological system, immunological system, pain, fatigue, and a very complex phenotype. So just measuring one of the features at a time is not necessarily the best way of capturing the phenotype.

So, our ontology framework basically allows you to capture the phenotypic cluster where patients are similar but not identical, so it’s not a yes/no question where it’s really clear you fall in this group or that group, but there are clusters of phenotypic profiles that resemble each other in a very flexible way. The goal is to develop a framework that will allow us to divide patients into clusters and then see if these clusters correlate with one or more of the features in the genomics base. That’s really the first component of the project.

The other component is to develop a machine learning framework that will also try to cluster the features such as distribution of bacterial species, gene expression, immune profiles, and metabolism. So, we have some major data sources in the project, and the overall goal is to create a machine learning framework that would look for clusters that can interrelate these data sources. And if we find something where we thought there was a significant co-clustering in two or more of these data sources, then my interpretation is that this would represent something that’s real rather than some kind of statistical blip.
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I think he sounds like a great asset to the team, with his combined knowledge of medicine, bioinformatics and genetics.

MErmaid · Mar 29, 2018

Trish said: ↑

I think he sounds like a great asset to the team, with his combined knowledge of medicine, bioinformatics and genetics.
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Yes, a great asset!

I read his bio, and felt he understood the nuts and bolts of what type of data to collect and how to use it. I hope he continues studying ME, because we need people like him to delve deeper.

Edited to add his bio:
https://www.jax.org/research-and-faculty/faculty/peter-robinson#

Barry · Mar 29, 2018

Looking at the literature, what’s striking to me is that the main problem is still identifying patients that have this disease and making a definition for it. It seems there are varying inclusion criteria depending on what study you look at, such that it’s very difficult to compare the results of two different studies.
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Yep.

Andy · Apr 28, 2021

Advances in ME/CFS - Hungry mice feel less pain

An interesting news article was recently published in Genetic Engineering & Biotechnology News about how acute and chronic pain are triggered by the activation of completely different neuronal circuits. In this recent study published in Cell from the University of Pennsylvania, researchers found that mice that hadn’t eaten in 24 hours responded differently to longer-term inflammatory pain than mice who had been recently fed.

These hungry mice still responded to acute pain, which is an important reflexive mechanism that protects us from serious injury. But the effects of hunger acted like anti-inflammatory painkillers to the mice, greatly reducing their responses to chronic pain. Amber L. Alhadeff, Ph.D., one of the UPenn researchers, said that this makes sense: “If you’re an animal, it doesn’t matter if you have an injury, you need to be able to overcome that in order to find the nutrients that you need to survive.”
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https://jaxmecfs.com/2018/04/17/gen-article-hungry-mice-feel-less-pain/

Wonko · Apr 21, 2018

I thought we already knew that higher levels of blood glucose were inflammatory, so not eating for 24 hours would logically reduce this level and thus, relatively, be anti-inflammatory?

andypants · Apr 21, 2018

Wonko said: ↑

I thought we already knew that higher levels of blood glucose were inflammatory, so not eating for 24 hours would logically reduce this level and thus, relatively, be anti-inflammatory?
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It will also raise your cortisol, which lowers inflammation short term.

Andy · Apr 28, 2021

People in ME/CFS - Jen Brea

We are very excited to present our next “People in ME/CFS Research” spotlight this week, which is my interview with patient and advocate Jennifer Brea! Jen is a documentary filmmaker who directed Unrest, a film about her experience with ME/CFS, which has received worldwide acclaim and brought much needed recognition to this disease. She also co-founded #MEAction, a global network for ME/CFS patients and their caregivers and doctors. Recently, Jen received ProHealth’s “2017 ME/CFS Patient Advocate of the Year” award. I was able to chat with her over the phone to learn more about her motivation for making Unrest, the response it has received, and her views of the ME/CFS field. Keep reading for the full interview!

Hi Jen, thank you so much for meeting with me! We watched Unrest here at JAX, and it was absolutely incredible and so informative. It really makes you aware of what it’s like to have ME/CFS, and it’s become such a flagship for the disease and for advocacy. Did it have the effect that you expected, and what kind of feedback have you gotten from patients, the medical community, and researchers?
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https://jaxmecfs.com/2018/05/08/patient-advocate-interview-jennifer-brea/

Sasha · May 13, 2018

Duplicate thread merged

Jackson Labs is Derya Unumatz's place and here's an interesting and recent interview by someone called Courtney with Jen Brea that covered some interesting things I've not heard Jen talk about before.

JAX said:

Hi Jen, thank you so much for meeting with me! We watched Unresthere at JAX, and it was absolutely incredible and so informative. It really makes you aware of what it’s like to have ME/CFS, and it’s become such a flagship for the disease and for advocacy. Did it have the effect that you expected, and what kind of feedback have you gotten from patients, the medical community, and researchers?

Hi Courtney! It’s funny, I think when I first decided to make the film, I just had a sense that there’s this gap – this horrible chasm between what everyone thinks this disease is and what it’s actually like to live with it. I would see that when I went to the doctor, or I was out in public, or talking to my friends, or I would see the media report on it. They were talking about a completely different experience than what I was living every day in my home, and that only my husband Omar and myself really observed.

Even our friends and family didn’t understand the truth of what it’s like to live with this disease until they saw the film. I think it’s really hard to understand unless you live in the home and you’re either affected or you care for someone who is. So in the beginning, all I wanted to do was figure out how to close that gap, in part because I think I needed to believe that I still lived in a world that was kind and just, and capable of recognizing an epidemic and responding to it...
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Read the rest here: https://jaxmecfs.com/2018/05/08/patient-advocate-interview-jennifer-brea/

Indigophoton · May 16, 2018

We are excited to present our second educational series on explaining our approaches in biomedical research. This series will focus on the microbiota (commonly called the microbiome), which is the community of microbes, including bacteria, fungi, and viruses, that lives everywhere on the inside and outside of humans.

Why do these organisms matter to us? The bacterial community in our gut is extremely important to our health, as these bacteria help us break down our food, make chemicals that affect our moods, and train our immune system to tell the difference between good bacteria and the bad, disease-causing ones that should be destroyed. The composition of the gut microbiota is somewhat different in each person, but there are certain species of bacteria that are seen in most people and known to be good for our health, and others that we know can be bad for our health if they grow to outnumber the good bacteria (figure 1). When the amounts of good and bad bacteria are thrown off-balance, this is known as dysbiosis, and has been linked to many diseases.

Figure 1. There are certain bacterial species that are common to everyone, but there is natural variation in the amounts of these bacteria present in the gut between different people. Some species that are bad for our health, like Clostridium, can grow in number and offset the natural balance, leading to dysbiosis.
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https://jaxmecfs.com/2018/05/16/approaches-in-biomedical-research-the-microbiome-part-1/amp

Indigophoton · May 31, 2018

We are pleased to present Alan Gurwitt, M.D, who is an ME/CFS patient, advocate and physician, in the latest “People in ME/CFS Research” spotlight. Dr. Gurwitt has a background working as an adult and child psychiatrist, and has been suffering from a mild case of ME/CFS for over 30 years. He also previously served as the President of the Massachusetts CFIDS Association, and has participated in countless advocacy initiatives over the years as a member of the organization. Dr. Gurwitt had visited Derya and me at Jackson Labs several months ago with a group of patients and advocates from Mass CFIDS. Keep reading for the full interview!
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https://jaxmecfs.com/2018/05/31/patient-advocate-spotlight-alan-gurwitt-m-d/amp

Hutan · May 31, 2018

What a lovely man. And psychiatrist.

Sly Saint · Jun 13, 2018

The Jackson Laboratory for Genomic Medicine

Farmington CT Patch
21 hrs ·
Event is June 14 @5:30 pm; Researcher to Give TED-style Talk on Latest Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Breakthroughs

JAX Hosts Free Community Event to Share CFS Research
Event is June 14 @5:30 pm; Researcher to Give TED-style Talk on Latest Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Breakthroughs
patch.com

eta:
When & Where

Thursday, June 14
5:30 PM – 7:00 PM

The Jackson Laboratory for Genomic Medicine
10 Discovery Drive
Farmington, CT 06032

The deadline for registration is Thursday, June 7, 2018.

Today: Chronic fatigue syndrome, (also called myalgic encephalomyelitis or ME/CFS) a highly debilitating and poorly understood chronic disease, affects between 836,000 and 2.5 million Americans. Symptoms include profound fatigue, cognitive dysfunction, sleep abnormalities and pain. This mysterious disease can look similar to many other illnesses and the cause is unknown. There’s currently no test to diagnose ME/CFS, so patients have to endure a lengthy process of elimination before knowing whether they have it.

In the future: Imagine a world in which patients can have their blood samples screened for potential immunological biomarkers of ME/CFS. No stigma, no waiting, no process of elimination: just a smart diagnostic tool that can lead to personalized treatments for the disease.

JAXtaposition: Derya Unutmaz, M.D., JAX immunologist and renowned expert in HIV, is finding ways to diagnose and treat ME/CFS by tracking down the immune, metabolic and microbiome changes that lead to the disease. Join him for a TED-style talk to learn more about how he is identifying the biomarkers for this chronic disease, in order to pave the way for precise diagnoses and new therapies for patients.

This is the future of medicine. This is JAXtaposition.

SPEAKER

Derya Unutmaz has received his M.D. from Marmara University Medical School, Istanbul, Turkey. He did postdoctoral studies at Novartis, Switzerland and at NYU. He was an assistant professor at Vanderbilt University, where he received tenure and promoted to associate professor. In 2006, he moved to NYU School of Medicine as tenured Professor of Microbiology, Medicine and Pathology. Since 2015 he has been Professor at Jackson Laboratory for Genomic Medicine, in Farmington, CT, and affiliated Professor at UConn School of Medicine. He is currently the director of Collaborative Research Center for ME/CFS at Jackson Laboratory.

His lab developed various genetic methods and assays to interrogate human T cells from healthy and patient subjects. These approaches led to several important discoveries on disruptions human T cell subsets during diseases such as HIV infection and understanding basic biology of human immune cells. Dr. Unutmaz’s research interest recently shifted in understanding the interaction between the human immune system and microbiota. He continues his translational medicine focus to understand and fine-tune immune responses during cancer, aging and variety of chronic diseases, especially Chronic Fatigue Syndrome (ME/CFS).

He has published more than 100 original papers, including in Nature and Science, and is a co-inventor in 7 patents. He is the Immunology section editor of PLoS One journal since its inception and frequent reviewer at NIH grant committees. He also served as reviewer in more than 50 NIH study sections and international review committees, and was steady member of NIH, NIAID, AIDSRRC study section between 2009 and 2014. He is currently the director of NIH funded Collaborative Research Center for ME/CFS at the Jackson Laboratory for Genomic Medicine in Farmington, CT.

https://www.jax.org/give-to-jax/events/jaxtaposition-chronic

Alvin · Jun 13, 2018

What an interesting idea, drown out Ester?

NelliePledge · Jun 13, 2018

Alvin said: ↑

What an interesting idea, drown out Ester?
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What does it say?

Alvin · Jun 13, 2018

NelliePledge said: ↑

What does it say?
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JAX Hosts Free Community Event to Share CFS Research
Event is June 14 @5:30 pm; Researcher to Give TED-style Talk on Latest Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Breakthroughs
By Francesca Campanelli, Nonprofit | Jun 12, 2018 9:35 am ET
0
This post was contributed by a community member.

JAX Hosts Community Event Sharing Latest Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Research

The Jackson Laboratory (JAX) is hosting a free community educational event on Thursday, June 14 at 5:30 p.m. to share the most cutting-edge research in chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS). JAX Professor and immunologist Derya Unutmaz, M.D., will give a TED-style talk about his search to find an efficient way to diagnosis and eventually treat ME/CFS.

ME/CFS is a debilitating and poorly understood condition impacting between 836,000 to 2.5 million people. Its cause is currently unknown, and there is no definitive way to diagnosis the condition. Symptoms include profound fatigue, cognitive dysfunction, sleep abnormalities and pain.

Unutmaz has set a bold goal to improve patients' quality of life by tracking down the immune, metabolic and microbiome changes in patients that contribute to the manifestation of the disease. Optimistic about the future, he envisions that something as simple as a blood test could screen for immunological biomarkers of ME/CFS and also lead to effective treatments.

Unutmaz recently received a $10.6 million center grant from the NIH to study ME/CFS as part of a multi-institutional research effort to create one of the most highly detailed collections of clinical and biological ME/CFS patient data. The goal of this research is to enhance the knowledge and understanding of ME/CFS and create a diagnostic tool which may lead to treatments. The grant builds on his previous $3.3 million award from the National Institute of Allergy and Infectious Diseases.

The event is the third in JAX's new speaker series, JAXtaposition: Cures Can't Wait ,which features TED-style talks on cutting-edge programs and research from JAX scientists and leadership.

To register, please visit: https://www.jax.org/give-to-jax/events/jaxtaposition-chronic.

About The Jackson Laboratory

The Jackson Laboratory is an independent, nonprofit biomedical research institution based in Bar Harbor, Maine, with a National Cancer Institute-designated Cancer Center, a facility in Sacramento, Calif., and a genomic medicine institute in Farmington, Conn. It employs 2,100 staff, and its mission is to discover precise genomic solutions for disease and empower the global biomedical community in the shared quest to improve human health. For more information, please visit www.jax.org.
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brf · Jun 15, 2018

Is this being webcast or a live event only?

Edit: Apparently the recordings will be made available on their website after editing.

Indigophoton · Jun 14, 2018

In our latest “People in ME/CFS Research” spotlight, I interviewed Alison Motsinger-Reif, Ph.D., an Associate Professor in Statistics at North Carolina State University, and the Biostatistics Lead for the JAX ME/CFS CRC. Alison has an interest in computational genetics, pharmacogenetics, and epistasis, and will be combining all of the microbiome, immune profiling, and metabolome data for the ME/CFS project into an interactome, where she can figure out which variables are relevant to the disease. Read on to learn more about her background, research plans, and how she got her start in science with Derya.
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https://jaxmecfs.com/2018/06/14/scientist-spotlight-alison-motsinger-reif-ph-d

Luther Blissett · Jun 14, 2018

So, what was your first impression of the ME/CFS field?

This has been my first time working with this disease, but I’ve been really struck by how understudied it seems to be, and how much is still unknown. Having so much that’s unknown is exciting as a researcher, but must be absolutely terrifying as a patient. So I was struck by how much there is to learn, as well as what is such an engaged and excited patient community. It’s exciting to have the people who the research will actually impact contributing to the science and giving their input and knowledge. Sometimes, with what I do with the statistical aspect, it’s easy to become really distant because I sit at the computer all day crunching numbers. Having a community that’s so active is really inspiring to me.
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I like this answer a lot.

I'm enjoying finding out about researchers, instead of being distant abstract beings, these interviews humanise them.

Skycloud · Jun 15, 2018

I find the excitement at how interesting we are encouraging. I hope this gets communicated effectively to other researchers.

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