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.”
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.
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.
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.”