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Patient Voice

Patient Voice – Back to School

back to school

Topic for September: Tell us about something your chronic illness has taught you. Living with ME/CFS and Fibromyalgia, so much is lost, but many tell us of the things they’ve gained as well. How have you learned to live a full life, in spite of living with a debilitating disease? Have you had moments when you thrive? What…

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Finding Recreation Again

National Ability Center

When someone is living with a debilitating chronic illness, one of the first things come to an end is any kind of recreational activity, for self and for the family. There are a number of adaptive recreation organizations across the US that can help people of all abilities – even ME/CFS and Fibromyalgia – enjoy many activities again.…

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Ten Minutes in Living Color

ten minutes

In this entry of the Patient Voice, Anne shares how her love of quilting, and carving out just a few minutes at her longarm frame, brought her ten minutes in living color – a sense of normalcy and bliss. If you have a similar story to tell, please share it with us. Learn more about…

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Parenting a Child with ME/CFS

parenting a child with mecfs

Parenting is one of life’s greatest challenges, made all the more complex if your child has a chronic illness like ME/CFS. We want you to know that you have options for building a strong network of support to help cope with the challenges of special needs parenting. Written by a mom who walks this road with…

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Patient Voice – Brave, Strong, and Smart

brave strong and smart

Topic for August : Tell us about a time when you felt brave, strong, or smart. What were the circumstances that led you to that moment? Who helped you get there? Living a life with ME/CFS or Fibromyalgia is one full of challenges. But as a wise Christopher Robin once told Winnie the Pooh, “Always remember, you…

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Chronically Ill Tea Party

Chronically Ill Tea Party

This past May – May 12th International ME/CFS and FM Awareness Day – BHC patient and friend, Jo Ivie, decided to put a positive spin on the day and do something personal and close to home – she hosted a Chronically Ill Tea Party. We thought it was such an amazing idea that we asked her if we…

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Instant Relief

instant relief

Relief can come in the smallest of moments and simplest of gestures. In this edition of the Patient Voice, Darla shares how a brief conversation with an empathetic professor gave her the release and instant relief she had prayed for just moments before. Darla is a writing tutor and editor who has had ME/CFS for seven…

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Facebook Friend Extends Real-Life Act of Kindness

In this entry to the Patient Voice, Mark tells us about a time when he was met with a radical kindness that he didn’t expect – all because of a simple Facebook post. Mark shares how he has found the chronic illness community to be one of great kindness throughout his illness journey. If you have a…

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Patient Voice – Unexpected Kindness

unexpected kindness

Topic for June/July : “Tell us about a time when someone showed you unexpected kindness and it had a positive impact on you as you manage your chronic illness” The personal motivation that led Dr. Bateman to open the Fatigue Consultation Clinic (FCC) and start the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), drives the culture…

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The Trifecta

Trifecta

In this edition of the Patient Voice, Mae Beth writes about facing the trifecta of Fibromyalgia, ME/CFS, and breast cancer in her life. When Dr. Bateman, who recently battled breast cancer as well, encouraged Mae Beth to share her story she was inspired to write her story and share it here. In the face of unrelenting attacks…

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