pixabay reward cfs brain

Rewarding the ME/CFS Brain

Jody Smith explains how growing virtual lettuce created a real sense of satisfaction and provided a subtle return to the land of the living… I knew I was coming back a bit to the land of the living after several years’ exile when I was able to go online again. Getting onto Facebook and learning my way around was quite a

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The Naive Patient

By Jody Smith About 10 years ago I began looking online for information and answers about my mystery illness. At that time, my sleeping and waking hours were upside down. I would sleep most of the day and be up throughout the night till dawn. I spent many disturbing hours online looking for answers. Back then, most of what I

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Hands

You and M.E. Together – a Carer’s Story

by Charlotte Dyer In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a

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Prof Dr Kenny De Meirleir

The De Meirleir Experience

Joel (snowathlete) explains why he decided to consult Dr Kenny De Meirleir and describes his journey to De Meirleir’s clinic in Belgium… I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in the summer of 2009 by an ME/CFS clinic run by the National Health Service.  The UK is about as backwards as it gets when it comes to

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Behind the Mask

A Hidden Life

TheChronicSituation writes about how choosing to live hidden behind even a partial mask can seem easier, especially when it saves on bothersome explanations. But, at the end of the day, pretense can come at a cost – nobody really knowing who you are… The majority of people I know, don’t know that I have CFS/ME. In a way, I feel

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Jody Smith

Phoenix Rising and Me

Jody Smith remembers the early days of the Phoenix Rising forums – and explains why she’s glad to be back… I don’t know exactly when I stumbled upon Phoenix Rising. It was during a period of years now shrouded in a CFS fog, when I was mostly awake in the middle of the night, sleeping through much of the day. I spent time

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CFS A Novel

The Long Road: “Chronic Fatigue Syndrome: A Novel” Author Returns to ‘Health’

Posted by Cort Johnson Caroline Anderson’s gripping novel “A Chronic Fatigue Syndrome Novel” protray’s a small communities fight for health (and justice) in the face of a mysterious disorder. When the lead character goes searching for answers she stumbles into a shadowy and even, at times, dangerous world of tainted government agencies and big corporations doing what they need to

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Breathing Deep with Valtrex: A Patient Improves

Posted by Cort Johnson The Recovery/Recovering Stories #4 Janet’s  Story What really attracted me to Janet’s story was how multi-dimensional it was.  She’s had both severe endocrine dysfunction and severe pathogen problems. Both high doses of antivirals and alternative ‘behavioral-like’ therapies like meditation and her own quest for (spiritual) wholeness have been important for her. She’s still quite ill but

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Lost in the Woods

Chronic fatigue syndrome (ME/CFS) takes people to many different places but its pushed few people as far from a normal life as it has Lisa.  Lisa has a twofer;  a severe case of both chronic fatigue syndrome and environmental illness.  If chronic fatigue syndrome is often numbingly difficult environmental illness (EI) or multiple chemical sensitivity (MCS) is simply harsh.  EI

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“I Almost Stole Today”

Posted by Cort Johnson This blog from someone in the Phoenix Rising Forums illustrates some of the decisions that confront people who have the misfortune to be both unhealthy and poor. What does one do, for instance,  when one only has a few dollars left at the end of the month for some stew and an onion costs 75 cents.  Shouldn’t everyone be able

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