Bateman Horne Center Article: Building Communities of Understanding and Hope

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Source: Bateman Horne Center

Bateman Horne Center (BHC), our clinical core in Salt Lake City, UT, recently posted an article about how patients suffering from ME/CFS and Fibromyalgia often experience social isolation and profound loneliness, which are detrimental to physical, mental, and emotional well-being. One of the best strategies to combat loneliness is to attend support groups, which give participants a community they can depend on for emotional support and understanding.

BHC offers two support groups each week with psychologist Liz Sherlock, PhD in Salt Lake City, with one geared towards patients and the other for caretakers. However, in-person meetings are not always feasible for patients and caretakers to attend, so the article also gives guidance about what criteria someone should use to choose an online support group. Many online support groups are a great alternative to in-person groups, and will also provide people with much-needed support, understanding, and coping strategies.

To read the article and see a list of online support groups on BHC’s website, click here. 

Approaches in Biomedical Research: The Microbiome, Part 1

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.

Continue reading “Approaches in Biomedical Research: The Microbiome, Part 1”

Patient Advocate Interview: Jennifer Brea

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Source: Shella Films

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! 

Continue reading “Patient Advocate Interview: Jennifer Brea”

Advocate Spotlight: Mary Dimmock

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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! 

Continue reading “Advocate Spotlight: Mary Dimmock”

Huffington post article on [ME/CFS] Symptoms, Diagnosis, and Treatment

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Source: Koldunov via Getty Images; for HuffPost

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.

To read the full article on HuffPost’s website, click here. 

ME/CFS Canadian Collaborative Team Conference

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Source: FourWaves

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.

To read the full article on PR Newswire’s website, click here. 
To view the conference program, click here. 

The #MillionsMissing Global Petition

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Source: ME Action

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!

To learn more and to sign the petition, click here.