XMRV and CFS Discussion

Chronic fatigue syndrome is a lonely disease

Published: May 11, 2010 7:00 PM
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.”

Ampligen for Treating XMRV in Chronic Fatigue Syndrome
Tuesday May 11, 2010
Research Brief

University of Nevada/Whittemore Peterson Institute researchers presented data suggesting that the drug Ampligen (poly I: poly C12U) can boost natural killer (NK) cell activation in people with chronic fatigue syndrome who test positive for XMRV. This may explain why Ampligen has been shown to alleviate symptoms in some chronic fatigue syndrome patients. Data were presented May 9 to immunologists attending a conference called Immunology 2010.

NK cells in your immune system destroy infected cells and are the body's first line of defense at keeping infection from spreading. Studies show that some people with chronic fatigue syndrome have low NK cell function.

Ampligen is a long-studied drug that was before the FDA for approval last year. The FDA denied the application but gave recommendations to the manufacturer about additional studies that could help the drug be approved down the road. Ampligen modulates the immune system and is believed to "jump start" the body's natural anti-viral defenses.

XMRV is a retrovirus that preliminary research ties to chronic fatigue syndrome and prostate cancer.

Chronic fatigue syndrome is disabling, misunderstood


Last Edit: May 11 2010 - 3:11pm


(UNEDITED)As a local resident, I am writing to ask you to educate the public and health care professionals about chronic fatigue syndrome (CFS). My life has been affected by this serious, yet misunderstood disease, and I am asking you to help raise awareness about CFS. May 12 is recognized as international CFS Awareness Day and now would be an optimal time for you to cover the effects of this condition on our community and nation.

I am a divorced mother of 4 who has M.E. also known by the public as CFS. I have had my life torn away from me and my family for over 10 yrs now. It effects every part of our lives, not just mine, but my kids. I can no longer go hiking, biking, rollerskating, go on trips, work, even make it to family school acitivites or church! I used to be able to do all that and work. I can no longer work either because my exhaustion, brain fog , dizziness etc is so bad. There is no treatment, there is no cure and society still doesn't believe it's real! I get judged almost daily. My kids have to hear all the judgements by friends and friends parents even. this is a horrible illness that is real, that takes away our life!

Please help us raise awareness, raise funding for a cure.......get our life back!

CFS affects at least one million American adults and teens, yet fewer than 20% of people with it have been diagnosed. Most people don't understand its serious and long-lasting effects. CFS is characterized by severe exhaustion, disabling problems with memory and concentration, widespread muscle and joint pain and persistent flu-like symptoms.

Research has

documented defects in the brain and many body systems, but we still don't know what causes it and treatment is limited to managing symptoms to improve function and quality of life. A new retrovirus, XMRV, has been linked to CFS and new research is going on all over the world to understand its role in CFS.

The name CFS is misleading and research shows that people with CFS are as disabled as those with multiple sclerosis, people undergoing chemotherapy for cancer, and battling late-stage AIDS. Each year it costs our economy as much as $25 billion in medical costs and lost productivity.

You can help deliver credible information to the public and the health care community so people recognize the symptoms and understand better what people with CFS experience.

If you're new to the topic of CFS, please read the article published in the spring 2010 issue of Pain Practitioner. Its authors are from the CFIDS Association of America, the nation's largest organization dedicated to conquering CFS, and staff there can help put you in touch with experts and patients who will speak on the record.
Thank you in advance for building understanding about this devastating condition that has such a profound impact on individuals, their family members and our community.

Dayna McCleery

Clinton

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