2nd Annual ME/CFS Advocacy Week

Source: White House Chronicle

Solve ME/CFS Initiative (SMCI) is organizing its second annual ME/CFS Advocacy Day on May 15. Patients, caregivers, and advocates will be on Capitol Hill in a lobbying effort to petition Congress to understand the urgent need to study this disease, and increase research funding. Llewellyn King, the executive producer and a columnist for White House Chronicle who has been writing about ME/CFS for nine years, recently wrote an article pointing out that Advocacy Day will coincide with #MEAction’s “Millions Missing” protests on May 12. King commented on the Advocacy Day event, saying that “it already has signed up nearly 100 patients, caregivers and activists to call on members of Congress, asking for recognition and explaining that they suffer from a disease that has been described as hidden in plain sight.”

For ME/CFS Advocacy Day information and event schedule from SMCI, click here.
To see Millions Missing protest locations and sign up, click here. 
To read the White House Chronicle article, click here.


Hungry Mice Feel Less Pain

Source: Wualex/Wikipedia, for GEN.

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.”

This could be relevant for ME/CFS and Fibromyalgia patients, who experience chronic inflammatory pain. Indeed, patients in the community responded to the article on Derya’s Twitter post,  and many said that they have noticed feeling better when fasting, or that eating in general has exacerbated their ME/CFS symptoms. However, others said that hunger can act as just another type of stress on their bodies and can make them feel worse, and that fasting is often difficult to tolerate. Research on hunger and its potential to reduce chronic pain is an interesting topic for future studies. The possibility of developing new medications that mimic the effects of hunger to suppress the chronic pain neuronal circuits may benefit those who suffer from chronic inflammatory pain.

To read more about the study on GEN’s website, click here. 

BHC Continuing Medical Education Course on ME/CFS and Fibromyalgia


In addition to treating patients, one of the major initiatives at Bateman Horne Center is to educate clinicians, researchers, and patients about ME/CFS. On April 27, BHC will be offering continuing medical education (CME) for clinicians on ME/CFS and Fibromyalgia, taught by Dr. Lucinda Bateman. Clinicians are required to do a certain amount of CME to retain their medical licenses, and this course will earn clinicians 4 CME credits.

Clinicians who attend will learn about the major presenting features of ME/CFS and Fibromyalgia, how exercise affects people with these conditions, and how to help patients identify their activity tolerance, among other topics. As a follow-up to the CME course, clinicians will also get information about the research that BHC participates in, and how they can refer patients to BHC for research projects.

For the full CME event flyer, click here. 

ME/CFS Feature Article in ASBMB Today

ASBMB Today ME/CFS Cover Story; Credit: asbmb.org

A feature article on ME/CFS was recently published in the current issue of American Society for Biochemistry and Molecular Biology (ASBMB) Today. The article, which is the cover story for the March 2018 issue, describes the long and complex history of misdiagnosis and lack of support that patients face when suffering from ME/CFS, and focuses on Lizzie Mooney, a 12-year old girl who has been sick for several years and is unable to attend school or even leave the house more than once a week.

The article discusses the lack of federal funding for research on ME/CFS that has been seen historically, and also highlights patient advocacy and the studies that several scientists involved in rebooting the research are doing, including the recent NIH funding for the Collaborative Research Center grants. “The NIH announcement in September of four grants totaling more than $7 million for fiscal year 2017, and continuing for the next five years, signifies a step in official [ME/CFS] recognition. The new NIH grants will support three collaborative research centers and a data-management coordinating center for [ME/CFS] research.”

To read the full ASBMB Today ME/CFS feature article, click here. 


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! 

Continue reading “Scientist Spotlight: Peter Robinson, M.D., M.S.”

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: MEAction.net

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.