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Patient Education

Novel Gene Variants in ME/CFS and Fibromyalgia

Presented by Alan R. Light, PhD. In February 2017, Dr. Light began a new NIH-funded research grant, Novel Gene Variants in ME/CFS and Fibromyalgia. This is a continuation of earlier work which discovered a number of novel variants in both chromosomal and mitochondrial genes that could contribute to the symptoms found in patients. This talk…

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What’s the Buzz – January 2017

Buzz – January 2017: We scoured the Internet to bring you a list of news articles, blogs and research publications we think you’ll find interesting for this month’s What’s the Buzz post.   On January 27th, the NIH made two big announcements of federal funding for ME/CFS collaborative research centers and Data Management and Coordinating Centers. While some feel the…

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Redefining POTS so that Everybody Understands

“Redefining POTS so that everybody understands: a primary care pediatric sports medicine perspective and review” Presented by Dr. Craig Colebey   Postural Orthostatic Tachycardia Syndrome or POTS is a disabling disorder, representing “a common pathway” for multiple different causes.  The heterogenous nature of its pathophysiology presents a challenge in its diagnosis and treatment.  I present…

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Holiday Survival Guide

  Living with ME/CFS and FM changes most everything, including how we celebrate the holidays. Perhaps one of the greatest gifts you can give yourself, or a loved one, is a ‘free pass’ on the guilt you may be tempted take on when you are unable to do it all. We all want a happy…

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Keeping It Clean: Clean and Dirty Suffering

presented by Timothy Weymann, LCSW Life – and chronic illness – has an inherent level of difficulty (i.e., “Clean Suffering”). The natural difficulties of life often trigger conscious and subconscious responses from us; responses we believe will help us solve our concerns. If we fail to critically identify, evaluate and intentionally select our responses to…

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Overcome Fear After Diagnosis

Being diagnosed with a chronic illness such as ME/CFS or Fibromyalgia can be quite a blow. Being afraid is one of the most common reactions to forced changes, but it isn’t something you should let consume your life. It’s normal to experience a range of emotions in the wake of such a diagnosis. However, you…

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Exploding Myths of Chronic Illness in Family Life

Presented by Heather Jarman When serious illness is diagnosed in a young person, parents are often the first people called upon to be medical caregivers for their child. Few parents are adequately prepared for the enormity of the challenges associated with such a massive life change, regardless of a child’s age. Part of making the…

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Simple Way to Assess Orthostatic Intolerance

NASA 10 Minute Lean Test* Orthostatic intolerance (OI) is an umbrella term used to describe abnormal autonomic nervous system response to orthostatic challenge.  Orthostatic hypotension (OH), neurally mediated hypotension (NMH) [or neurogenic hypotension] and postural orthostatic tachycardia syndrome (PoTS) are terms used to describe variants of this response.  The new evidence-based IOM clinical criteria for…

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Evaluation and Management of Acute and Chronic Sinusitis

Presented by Deb Keye, MMSc, PA-C Sinusitis is one of the most common issues in ENT medicine and can be a chronic issue for many, especially those with underlying immune dysfunction. In her talk, Deb Keye discussed how to procure proper evaluation and treatment of sinus issues. Deb Keye trained at Emory University Physician Assistant…

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Finding Recreation Again

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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