Scientist Spotlight: Peter Robinson, M.D., M.S.


We are excited to present our next “People in ME/CFS Research” spotlight this week, which is my interview with Dr. Peter Robinson. Peter and his group have developed an international standard for computation over human disease that is widely used by scientists and clinicians, and he is also the Computational Biology Lead for the ME/CFS CRC at The Jackson Laboratory. I recently sat down with Peter to learn more about his background and his plans for the ME/CFS project. Keep reading to find out what he thinks! 

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Release of Common Data Elements (CDEs) Public Comments

In December and January, the National Institute of Neurological Disorders and Stroke (NINDS) branch of the NIH had a public review period where the public could comment on the ME/CFS Common Data Elements (CDEs) with their feedback and recommendations for changes. The CDE Working Group has now released all of the comments from the review period, which they have used to modify the CDEs.

The comments were very extensive, and the majority of reviewers agreed that there were gaps in the previous CDEs. A significant number of the commenters asked for specific and consistent diagnostic criteria to be used for all research studies, such that the criteria used is not too broad, and the data from different studies can be compared to each other. There were also several comments that suggested better definitions for both fatigue and post exertional malaise (PEM) be used, as these were not defined clearly. The community has put in an extensive amount of effort to submit these comments, and it is clear that they are hopeful that good data standards will contribute to ME/CFS research.

To read the public comments, click here.
To read the first draft of the revised CDEs, click here.

Farewell to Robert “Bob” Courtney

Robert “Bob” Courtney, Credit:

In very sad news, Robert Courtney, a well-known ME/CFS patient and compassionate advocate, has chosen to end his life. At age 48, Bob had been suffering from this terrible disease for thirteen years, and recently experienced a drastic decline in his health. Bob was active in the online ME/CFS community, and was known to many for his kindness and sense of justice. Formerly a care worker, he was passionate about the quality of ME/CFS research, and authored numerous published letters in medical journals.

We are terribly sorry to learn of his passing, and our thoughts are with his family, friends, and the community in this difficult time. Bob will be remembered as a force for good and all that is just for patients, and his memory will serve as a reminder of how important it is that we keep fighting to find a cure for ME/CFS. Rest in peace, Bob.

Click here to read a tribute created by Bob’s friends on MEAction’s website.
Click here to sign the condolence e-card for Bob’s family. 

Nature News Article: Machine learning spots treasure trove of elusive viruses

Many viruses are difficult to study because they cannot be grown in the lab. Credit: Sebastian Kaulitzki/SPL/Getty for Nature.

An interesting news article was just published in Nature about how the emerging tool of artificial intelligence (AI) is making it easier for scientists to study viruses. The article,  written by science journalist Amy Maxmen, focuses on the difficulty of identifying the vast number of viruses within our bodies, as they are difficult to isolate or culture, and because we know so little about them that we don’t know what to even look for. To overcome this challenge, several computational scientists have applied artificial intelligence (AI) or machine learning approaches to sequencing the bulk of the microbiome (bacteria and viruses) that inhabits human tissues.  Given the complexity of this vast microbial ecosystem, AI approaches are showing great promise in decoding or identifying novel viruses among the sea of other sequences, most of which will be bacterial or host in origin. This could be an important direction in revealing important relationships or dynamics between viruses, bacteria, and human cells.

Viruses overall play a major role in human health and disease, from causing known conditions like the flu or HIV to potentially having an effect on the human microbiome and maybe even ME/CFS disease. Indeed, a recent review article in Clinical Science on the state of ME/CFS microbiome research pointed out that viruses that infect bacteria could alter the microbiome by transferring genes to these bacteria or by outright killing them, and that this could have a direct or indirect effect on human health. This makes the human virome an interesting topic in the context of ME/CFS, and an area that needs more study. Derya was quoted in the Nature article, and he speculated on the potential impact: “Biomedical researchers have long wondered whether viruses contribute to the symptoms of several elusive conditions, such as [ME/CFS] and inflammatory bowel disease. Derya Unutmaz, an immunologist at the Jackson Laboratory for Genomic Medicine in Farmington, Connecticut, speculates that viruses might trigger a destructive inflammatory reaction — or they might modify the behaviour of bacteria in a person’s microbiome, which in turn could destabilize metabolism and the immune system.”

To read the full Nature article, click here. 

ME/CFS Clinician Spotlight: Lucinda Bateman, M.D.

LB Photo
We are excited to present Dr. Lucinda (Cindy) Bateman as part of our “People in ME/CFS Research” spotlight series. Cindy is the Founder and Medical Director of the Bateman Horne Center (BHC), which is also the clinical core for the JAX ME/CFS CRC. At BHC, she cares for patients suffering from ME/CFS and Fibromyalgia, educates physicians and patients about these diseases, and develops clinical research projects with Dr. Suzanne Vernon. I recently called Cindy to ask about her journey through the ME/CFS field, and how BHC got it’s start – read on for the full interview!

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Release of the NINDS Common Data Elements (CDEs) First Draft


The National Institute of Neurological Disorders and Stroke (NINDS) branch of the NIH has now released the first draft of the ME/CFS Common Data Elements (CDEs) to the public. The CDE Working Group recently had a public review period in January 2018, where the public could review and comment on the CDEs with their recommendations. After the review period, the Working Group reviewed all of the comments and published the final CDEs.

The purpose of reviewing and revising the ME/CFS CDEs was to standardize clinical and molecular data collection to aid in comparing the results across multiple studies. NINDS has asked that researchers who have been funded by the NIH use these CDEs in their research of ME/CFS whenever possible.

Click here to read the first draft of the Common Data Elements for ME/CFS on the NINDS website.


Scientist Spotlight: Julia Oh, Ph.D.


As part of  our “People in ME/CFS Research” spotlight series, I talked with Dr. Julia Oh, who  is an Assistant Professor in Microbiology at The Jackson Laboratory and the Associate Director of the JAX ME/CFS project, leading the microbiome project. Her lab investigates how our microbes contribute to our health by using diverse technologies like genomics, synthetic biology, and genome engineering to target and manipulate the microbiota. Here is her interesting background, and more about the very exciting research directions she focuses on involving the bacteria that we cohabit with in our bodies. Keep reading for the full interview!

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