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Patient Education

CFSAC: Current News in ME/CFS Federal Advocacy

ME/CFS advocacy groups play a significant role in educating wider community and government groups about ME/CFS. One such organization, the Chronic Fatigue Syndrome Advisory Committee (CFSAC), operates as an independent group providing formal recommendations on ME/CFS-related issues to The Secretary of Health and Human Services at the federal level of the United States government. CFSAC’s…

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NIH Announces Precision Medicine Initiative

Research tends to neglect ME/CFS and FM – until right now. Precision medicine is the emerging scientific idea that medical treatment can and should be maximally efficient by tailoring medicine and healthcare to individual circumstances. Current research studies, however, do not have the size and diversity necessary to produce enough statistical power for individualized treatments.…

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Public Awareness of ME/CFS : A Changing Story

Millions are missing. This tragically summarizes the status of research funding for ME/CFS and FM, the staggering financial blow to the economy as patients and caregivers decrease or withdraw their workforce involvement, and most importantly, the millions of people who are missing from communities all over the world due to these debilitating diseases. For decades,…

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Navigating the School System with Chronic Illness

School can be an exceptionally challenging struggle for students with ME/CFS and FM. This May, in our monthly education meeting, guest speaker Doctor Lane Valum shared crucial strategies for how to work with, instead of against, the school system in getting students the help and resources they need for academic success.  IEP and 504 Plans…

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Building Communities of Understanding and Hope

“Loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than obesity,” reports Douglas Nemecek, MD, Chief Medical Officer of behavioral health in a major new study on loneliness that outlines the prevalence and significance of loneliness and social isolation, as well as a handful of coping…

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A Consensus-Driven ME/CFS Clinician Coalition Takes Shape

On March 2-3, 2018, the Bateman Horne Center hosted an exciting summit of leading U.S. ME/CFS clinicians who came together to share their pearls of wisdom on diagnosis and treatment in order to improve ME/CFS clinical care and refine more precise research targets. The meeting was remarkable for the ambitious nature of the agenda, the enthusiastic…

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Dr. Bateman Summarizes the ME/CFS Clinicians’ Summit

Lucinda Bateman Photo

When Dr. Lucinda Bateman attended an ME/CFS research symposium recently, she had no idea of the challenge she would face. At the conclusion of the symposium, Dr. Ron Davis, a leading researcher in the ME/CFS field, challenged her to hold a similar ME/CFS summit for clinicians. Dr. Bateman isn’t one to back down from any…

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“Unrest” Panel Discussion

Jen Brea’s movie, Unrest, is bringing attention to the struggles that people with ME/CFS face. This award-winning film is available on Netflix, Amazon, and your local PBS station, and if you haven’t seen it yet, block out some time to take a look. Jen turns an unflinching camera on her life and the lives of…

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Keeping Spirits Bright: Managing the Post-Holiday Letdown

Some people, especially those with chronic disease, experience depression and/or seasonal affective disorder (SAD) after the holidays are over. Dr. Stuart Drescher, a psychologist experienced in working with patients with chronic diseases including ME/CFS and Fibromyalgia, gives tips on how to manage the letdown that often occurs in January and February, when the holidays are over and the days seem dark and dreary.

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When Mommy Can’t Dance: How to Be a Chronically Ill Mom

It’s a hard to be a sick mom. For most mothers, a few days of illness may mean a back-up of laundry and a night or two of frozen pizza or cold cereal for dinner. For those of us moms that are chronically ill, it’s a whole other ball game. Certainly we have to adapt, get creative, and employ as many mom hacks as we can (i.e. Amazon prime, grocery pick up, self-serve kid snacks, and yes, we still have an above average number of cereal dinners). Beyond the physical demands and limitations, however, are the mental and emotional obstacles that we face. The mom guilt is present enough when you are healthy; it can be even more crushing when you are not.

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