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Patient Voice

This is Personal: BHC’s Patient-First Perspective

Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. Most of you know that our organization is named after Dr. B, but many don’t realize it is also named after her sister, Shauna Horne.

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Empowerment Through Preparation

Living with ME/CFS or fibromyalgia, important, energy consuming events can be absolutely overwhelming and impossible. In September’s education meeting, Linda Milne – a longtime patient and community member of the Bateman Horne Center – shares her knowledge about preparing for natural disasters, travel, and volunteering while living with chronic illness. Empowerment through Preparation  Medical complications…

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We See You. You are Not Missing to Us.

On May 12th, individuals around the globe will be celebrating International ME/CFS and Fibromyalgia Awareness Day.  The May 12th date was chosen because it is Florence Nightingale’s birthday and she was believed to have suffered from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a chronic disabling multi-system illness that remains misunderstood, underfunded in research, and even trivialized by some today.

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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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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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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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What I Learned from the NASA 10-Minute Lean Test

What I Learned from my NASA 10-Minute Lean Test

Written by a patient who participated in a BHC research study to validate a new protocol used to assess orthostatic intolerance. Here she shares what she unexpectedly learned from her NASA 10-Minute Lean Test at BHC To be perfectly honest, when I decided to participate in the NASA Lean Test Research study at BHC, I…

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CFSAC Education Workgroups Seeking Patient Input

CFSAC Feedback Surveys

BHC has converted their questions into a simple online questionnaire The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). Administrative and management support for CFSAC is provided by…

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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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