Post by Fae kitty on May 13, 2010 12:57:01 GMT 10
Article from Vernon Morning Star 11th May 2010
Chronic Fatigue Syndrome is a Lonely Disease
Like many other people who have the disease, Perry Doner wishes there was no need to mark Chronic Fatigue Awareness Day.
“Because it’s something you can’t see, we don’t get a lot of understanding and it’s difficult to get a diagnosis and that’s very frustrating. I tell people to imagine the worst flu they ever had made 10 times worse and not ending and that’s something like chronic fatigue syndrome,” said Doner, the local support person for the Myalgic Encephalomyelitis Society of B.C.
“It’s a lonely disease because it’s hard to keep relationships going and it was not taken very seriously at first so there was little research done. It is not yuppie flu or hypochondriac housewife syndrome. I wish they would change the name although it does describe how we feel.”
In many countries chronic fatigue syndrome is called myalgic encephalomyelitis or ME (meaning pain associated with the brain and inflammation of the spinal cord).
“It’s not a mental health condition, it’s neurological and physical. Every system in the body is stressed and a person is completely exhausted all the time,” said Doner.
“I compare it to a dead car battery which can be ‘charged’ by sleep and be OK for a little while but as soon as you turn the headlights on, have any kind of stress, everything dies. It can take weeks to get over things. The more you care, the sicker you get. You can’t get emotional about anything. Suicide is the number one cause of death for people with chronic fatigue syndrome, it’s eight times the national average.”
Chronic fatigue syndrome is now thought to be caused by a retrovirus called XMRV (Scientific American Oct. 2009) which can be turned ‘on’ quickly or gradually by hormones affected by stress, infections or interleuken cytokines (brain/body messengers) which do not respond properly. The body overreacts to stress and does not return to balance in the way that it should.
Research is being done on how the retrovirus invades the cells and changes the DNA to replicate dysfunctional cells.
Since the XMRV retrovirus may also be implicated in prostate cancer, Doner is hopeful that more research will be done. The XMRV retrovirus was discovered at the Whittemore Peterson Institute associated with the University of Nevada. The institute was built by a couple whose daughter has had chronic fatigue syndrome for more than 20 years.
“My hope, and I guess, that of a lot of people, is to hang on until there is more research and a treatment and/or cure discovered,” he said. “I don’t want to talk about myself but I lost everything to this illness, home, career, family. The need for understanding and awareness and more research is so great.”
click for full article
Chronic Fatigue Syndrome is a Lonely Disease
Like many other people who have the disease, Perry Doner wishes there was no need to mark Chronic Fatigue Awareness Day.
“Because it’s something you can’t see, we don’t get a lot of understanding and it’s difficult to get a diagnosis and that’s very frustrating. I tell people to imagine the worst flu they ever had made 10 times worse and not ending and that’s something like chronic fatigue syndrome,” said Doner, the local support person for the Myalgic Encephalomyelitis Society of B.C.
“It’s a lonely disease because it’s hard to keep relationships going and it was not taken very seriously at first so there was little research done. It is not yuppie flu or hypochondriac housewife syndrome. I wish they would change the name although it does describe how we feel.”
In many countries chronic fatigue syndrome is called myalgic encephalomyelitis or ME (meaning pain associated with the brain and inflammation of the spinal cord).
“It’s not a mental health condition, it’s neurological and physical. Every system in the body is stressed and a person is completely exhausted all the time,” said Doner.
“I compare it to a dead car battery which can be ‘charged’ by sleep and be OK for a little while but as soon as you turn the headlights on, have any kind of stress, everything dies. It can take weeks to get over things. The more you care, the sicker you get. You can’t get emotional about anything. Suicide is the number one cause of death for people with chronic fatigue syndrome, it’s eight times the national average.”
Chronic fatigue syndrome is now thought to be caused by a retrovirus called XMRV (Scientific American Oct. 2009) which can be turned ‘on’ quickly or gradually by hormones affected by stress, infections or interleuken cytokines (brain/body messengers) which do not respond properly. The body overreacts to stress and does not return to balance in the way that it should.
Research is being done on how the retrovirus invades the cells and changes the DNA to replicate dysfunctional cells.
Since the XMRV retrovirus may also be implicated in prostate cancer, Doner is hopeful that more research will be done. The XMRV retrovirus was discovered at the Whittemore Peterson Institute associated with the University of Nevada. The institute was built by a couple whose daughter has had chronic fatigue syndrome for more than 20 years.
“My hope, and I guess, that of a lot of people, is to hang on until there is more research and a treatment and/or cure discovered,” he said. “I don’t want to talk about myself but I lost everything to this illness, home, career, family. The need for understanding and awareness and more research is so great.”
click for full article