It was great to recently meet ME/CFS advocate Mary Dimmock during her visit to JAX to meet Derya. This was also an opportunity to interview her for our “People in ME/CFS Research” spotlight, learn her story, and benefit from her opinions of the field. Mary has a background working at Pfizer, a pharmaceutical company, and has become a major name in ME/CFS advocacy after her son became ill with this chronic disease. She has done advocacy at the state, federal, and international levels to attempt to increase funding for ME/CFS. We are also very happy that she has agreed to be part of our Community Impact Steering Committee here at the Jackson Laboratory ME/CFS Center. Keep reading for the full interview!
An article in HuffPost discusses ME/CFS symptoms, diagnosis, and treatment. In particular, the author discusses post-exertional malaise (PEM), the major symptom of ME/CFS. It is thought by many that PEM is the main defining symptom of ME/CFS, and is characterized by extreme fatigue following mental or physical exertion, and which is not alleviated by rest.
The article also discusses the difficulty patients often experience in achieving a diagnosis of ME/CFS, saying, “diagnosis of [ME/CFS] is largely an exercise in narrowing down, so all possible conditions which match a person’s symptoms are gradually crossed off and [ME/CFS] is the last remaining answer.” It’s an interesting read and good visibility for this much neglected disease.
On May 3-5, 2018, the first ever ME/CFS Canadian Collaborative Team Conference will be held by the Canadian Institutes of Health Research (CIHR) in Montreal, QC. PR Newswire recently published an article about the event, giving information about the conference topics and speakers. The conference, which has the purpose of bringing together the collective knowledge of experts in the field in the hopes of shaping the international research agenda, will feature speaker presentations on topics such as the history of ME/CFS, orthostastic intolerance, and objective diagnosis of ME/CFS, among many others. Derya Unutmaz, M.D. of Jackson Labs, will be in attendance, and will speak about the interactions between the human immune system and gut microbiota, and their potential impact on ME/CFS. Dr. Cindy Bateman, the founder of Bateman Horne Center, our clinical core, will also attend and speak about clinical diagnosis of ME/CFS.
ME/CFS, which affects 15-30 million people around the world and leaves up to 25% of sufferers house- or bed-bound, has an incredible social cost and has received historically inadequate funding from government agencies. #MEAction currently has a global petition to call on every government in the world to formally recognize ME/CFS, and increase research funding. The goal is 6,000 signatures, and there are currently nearly 5,900. Please help #MEAction reach their goal!
A study from the University Medical Centre Groningen in The Netherlands suggests a possible link between ME/CFS symptoms and lower thyroid hormone levels. The researchers focused on signs of low-grade inflammation and subclinical hypothyroidism, and found that ME/CFS patients had normal levels of thyroid stimulating hormone (TSH), but lower levels of key thyroid hormones triiodothyronine (T3) and thyroxine (T4). The group also found a higher percentage of reverse T3 (rT3) compared to T3, and evidence of chronic low-grade metabolic inflammation in patients.
The research was also highlighted in a recent article published by Genetic Engineering & Biotechnology News: “In hypothyroidism, the body tries to encourage thyroid hormone activity by releasing more thyroid-stimulating hormone—however, this does not happen in patients with [ME/CFS].” This is an interesting result, and if the findings are confirmed by more studies, could be a first step in finding possible treatments for a subset of patients with this disease.
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.”