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Posts Tagged ‘living with ME/CFS’

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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Accelerating ME/CFS Research Through Brain Donation

So often, people with ME/CFS are told to “get over it” since “it’s all in your head.” While this is devastatingly inaccurate, there is an unintended glimmer of truth here – the brain plays an important role in ME/CFS. According to Research Director Suzanne Vernon, “The brain is the command and control center. There is…

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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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“Normal Town” by Rebecca Adams

One morning three years ago, I woke up early determined to do something “that normal, healthy” people do. I donned a t-shirt and sweats, went to the gym, and jogged on the treadmill for 20 minutes. No big deal, right? Think again. The aftermath of my 20 minute stay in “Normal Town” earned me a…

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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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Ours Is Not a Caravan of Despair: Finding Hope

Dr. Elizabeth Sherlock has watched many family members suffer with ME/CFS throughout the past several decades. In this moving and poetical presentation, she shares what she and her family learned through these experiences and gives ideas on how to find your true self.

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Pass or Fail? A Young Patient’s Perspective

Written by Brooklyn Ingram, a young person with ME/CFS, this blog post describes her refusal to be defined by a disease. Read more of her blog Future Dead Person here. We live in a culture that demands clearly defined roles for every individual. I see these roles in my own life, and I hope you see them…

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Patient Voice – Meditate to Find Peace

Meditate to Find Peace

Three years ago, Megan Hastings began most mornings with a quick run and some meditation. Today, the effects of her illness make running impossible, but she finds she can meditate to bring comfort and peace. The practice helps her to reduce stress, increase self-awareness, happiness and acceptance. Megan, mother to three and devotee to her best friend, has a…

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Patient Voice – Look For Surprises

Look for Surprises

Still reeling from her diagnosis, Nicole shares how three surprises took her down a path that led her to help, hope and BHC. Nicole Paolucci Rabanal is a wife, mother, friend and physical therapists from Steamboat Springs CO. Upon returning to health she looks forward to living her life fully again as a wife, mother,…

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Living With a Partner Who Has ME/CFS or FM

Partner with ME/CFS or FM

Chronic illness and marriage is a complicated combination. It’s rare to see  or hear a healthy spouse’s perspective on their partner’s disease because it is a topic that can be very difficult – as much for the one speaking as for the one hearing it. With an estimated divorce rate as high as 75% among…

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