Great San Diego News Network article

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Levi just posted this article from San Diego News Network on the media thread.

Chronic fatigue patients fight a ‘lazy’ label, advocate for awareness
But you don't look sick: San Diegans suffering from mysterious and misunderstood chronic fatigue syndrome battle daily life


I thought it was a great article. Oh rats – another letter to write(email below)! It’s over 1,000 words I’d guess. Uses 2 patient egs – and starts with a man. Very well written and easy to read, good photos. The approach is one of starting with negative reactions that are common, then giving the info that dispels the myths + builds empathy.

Eg
“I made disparaging remarks in my own head,” Deering said. “Chronic fatigue. Right. He’s just lazy.”

Little did he know, however, that it would be a day he wouldn’t soon forget.
“That image popped up again 10 years later when I was diagnosed with CFS,” he said.
Then Kim McCLeary is quoted numerous times and there’s a cfids link. Maybe they’re starting to step up!

“Imagine the worst flu you’ve ever had,” said K. Kimberly McCleary, president and chief executive officer for the CFIDS Association of America. “This is really a kind of bone-draining exhaustion, where you feel like it is just a monumental effort to do any normal activities of daily living. Getting up, getting dressed. All of those things just wipe you out completely. When you’re stuck in bed with the flu, you’re stuck in bed with the flu. It’s not a matter of not wanting to get up. You can’t get up.”
Then xmrv is mentioned in the middlish (I don’t get her cfs me distinction)

Just weeks ago, in the Oct. 8 issue of Science, researchers at the Whittemore Peterson Institute at the University of Nevada in Reno found that CFS may be linked to the retrovirus XMRV (xenotropic murine leukemia virus-related virus), which is in the AIDS virus family.

The retrovirus, which has also been related to an aggressive form of prostate cancer, was found in 67 percent of the 101 CFS patients tested and only 4 percent of the 218 healthy controls who were tested, McCleary said.

“We are trying to understand what the role of XMRV is and whether that can be an aid in diagnosis and perhaps a route for treatment,” she said. “It’s fighting time right now because it’s kind of re-instilled hope for a lot of people that we’ll find some of these answers in the near term.”

The news also spreads optimism to those who suffer from subsets of CFS, like myalgic encephalomyelitis, a disease akin to CFS that was defined in the 1950s after an outbreak in the United Kingdom, McCleary said.

For now, she said, researchers are relying on current working knowledge, which consists of three ideas. First, it seems likely that sufferers are predisposed to CFS; that is, there is a genetic component involved. On top of that, most people report being in an immune-compromised state at the time they first become ill. The third factor is what is thought to really set off the condition, a bout of flu or mono, or possibly even exposure to environmental toxins.

“From that point, usually a healthy immune system would be able to fight that off and return the body to a healthy state, but what seems to happen in CFS is that after that triggering event, the body goes into kind of a hyper-drive to fight off that infection and never resets itself,” McCleary said. “Most people relate it to, ‘I thought I was coming down with the flu … and I’ve been in bed for 11 years.’”


Definitely worth the energy for a full read, I’d say.

Final note – I like all the tags she put at the end (see below) – from what I remember of page optimizing, this article is going to get a lot of hits because she did that.

Happy reading!

islandfinn:)


By Jennifer Reed, SDNN

Jennifer Reed is SDNN’s health and wellness editor. She can be reached at jennifer.reed@sdnn.com

Tags: AIDS, Bob Deering, CDC, Centers for Disease Control and Prevention, CFIDS, CFS, chronic fatigue and immune dysfunction syndrome, chronic fatigue syndrome, disability, Epstein-Barr virus, fibromyalgia, flu, K. Kimberly McCleary, lupus, Mexican Hairless Xolo, multiple sclerosis, myalgic encephalomyelitis, Nancy Gordon, science, SDNN, University of Nevada in Reno, Whittemore Peterson Institute, XMRV

This entry was posted on Saturday, November 14th, 2009 at 8:42 am and is filed under Health, Lifestyle. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.
 

Frickly

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Good article

"When youre stuck in bed with the flu, youre stuck in bed with the flu. Its not a matter of not wanting to get up. You cant get up.

I love this quote.....This would be a good way to describe CFS on the Oz show.