Similar to the Dubbo studies in Australia, the study followed people, in this case, adolescents, who came down with an infection (infectious mononucleosis), to see who would then come down with chronic fatigue syndrome and why.
This article is excerpted from the September 2000 issue of Dr. David S Bell’s medical office newsletter, the Lyndonville News
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A couple of months ago, Dr. Bell and I were sitting on his back deck talking about children and CFS, and the impact of the CFS diagnosis on their emotional and physical well being. I have always held strong to the fact that the diagnosis is critical in the child’s ability to cope with the hardships of the illness itself. Dr. Bell raised several other points for my consideration and suggested I write this up for all to ponder.
My son’s road to diagnosis was pretty typical. He saw the “somewhat standard” 10 medical professionals who all questioned us, pondered possible diagnoses and sent him on to the next specialist who would probably have an answer. It ended in a tiny examining room of an esteemed Infectious Disease doctor at a prestigious teaching Children’s Hospital when the doctor told him to get on with his life.
He spoke to our scared 10-year-old son alone in the room without our presence and told him he knew there was nothing wrong with him. But he offered us the comforting words on departure that if it was CFS, which he had never really seen, then ALL kids were better within 4 years.
An enterprising and artistic Papakowhai teen has launched a website for her artworks forged in the face of a painful and debilitating condition, and her work has already received an award.
Ella Kane, 14, lives with chronic fatigue syndrome, also known as myalgic encephalomyelitis, a nervous system condition that leaves her scarcely able to leave the house or move, and constantly in severe pain throughout her entire body.
“It’s like always having exhaustion, and every hour of every day my body’s in severe pain.”
Ella Kane, a 14 year old CFS/ME and Fibromyalgia sufferer from Wellington, has won the People’s Choice Award in this online competition.
The theme of this competition was “Art Inspired by Pain’ – to show through creative means what pain has taught you and/or how it has changed the way you see the world.”
To view her artwork called “Empty Heart of Pain”, go to:
Please be aware that some of the photos/drawings are quite graphic – the one above Ella’s especially. Sorry if this offends anyone.
As winner of the People’s Choice award, her artwork will be auctioned (along with others donated by NZ and overseas artists) at a charity event in Auckland, with the proceeds of the sale of her work going to the Wellington Region CFS/ME Support Group.
The auction will be held at Tabac Bar in Mills Lane, downtown Auckland on
5th Sunday 6th November 2011 (actual time to be confirmed).
The format will be a silent auction with bidding sheets by each piece, and short sets from various acts throughout the evening with breaks to allow people to look at the artworks, drink and have a fantastic time.
Ella also has her own website for her other artwork – www.loveandlight.co.nz
You can also ready her story on her About Me page where she talks about how she started drawing again after 2 years of not being able to draw due to her pain condtion. A very brave young girl, who has put her heart and soul into her artwork and is an inspiration to us all.
This ME/CFS patient case history is excerpted from Dr. Bell’s book Faces of CFS – Case Histories of Chronic Fatigue Syndrome, published in August, 2000. Each case illustrates a different aspect of the illness that he has studied since the ‘Lyndonville Outbreak’ of 1985-1987. And the detective work continues.
A new survey of Dutch doctors and their patients suggests that chronic fatigue syndrome affects only about 1 in 900 teenagers – but takes a heavy toll.
Among those teens diagnosed with chronic fatigue syndrome, or CFS, more than 90 percent had at least missed “considerable” school in the last 6 months, with some saying they had not attended school at all during that time.