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The Lights: Sufferers of chronic fatigue, fibromyalgia have hope in new diagnostic tool

Firestormm

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Sufferers of chronic fatigue, fibromyalgia have hope in new diagnostic tool
May 16, 2014

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Doctors Alan Light and Kathleen Light from the Anesthesiology Department at the University of Utah have discovered a way to definitively diagnose someone with chronic fatigue syndrome Friday, May 16, 2014.
Summary

Utah researchers are in the process of developing a definitive blood test to help doctors diagnose and better treat chronic fatigue syndrome, just as a local physician is ramping up to build a dedicated clinic for treatment.


“Fatigue is one of the most important homeostatic mechanisms in the body. Fatigue is there to prevent you from using up your energy source.” Alan Light

SALT LAKE CITY — Matt Remes moved with his family to Utah to pursue his dreams of becoming an Olympic skier.

But before he even got here, his body was making other plans.

Doctors don't know what happened to the now 15-year-old Park City student, but it has been decided that Remes suffers with chronic fatigue syndrome, an illness that is not very well understood but is keeping him from doing things other teenage boys can do — even those who are characteristically resilient and exceptionally competitive, like Remes.

"I was just so tired, and I couldn't understand why," said Remes, whose knobby knees and skinny ankles resemble those of someone half his age.

Fortunately for him and the more than 1 million sufferers of the largely unrecognized illness in the United States, a husband and wife team of researchers at the University of Utah has found a way to objectively explain it.

Using relatively new gene expression technology, Alan and Kathleen Light have discovered that certain genes react to physical exertion in different ways for people with chronic fatigue syndrome or fibromyalgia. Both are illnesses in which the body can't perform to its previously healthy capacity. It tires much more quickly and sometimes exhibits horrible pain...

Read more: http://www.deseretnews.com/article/...myalgia-have-hope-in-new-diagnostic-tool.html

Three page article...
 
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Firestormm

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Alan Light has been studying fatigue for decades, but teamed up 10 years ago with his wife, who has been working on understanding fibromyalgia and pain. Their latest findings are part of a National Institutes of Health study involving about 140 patients with chronic fatigue syndrome in Utah.

The mechanism for obtaining a gene expression profile from patients is already patented by the university, as there is hope to turn it into an actual diagnostic tool all doctors can use to confirm what is going on in someone's body.

Kathleen Light said it is important that people who suffer from these now-documented conditions get the help they need.

"In many ways, they have had their lives stolen from them," she said. "They feel they can't function doing their occupation, or in their family roles. Their lives are just completely turned upside down from this."

Patients were asked to perform a moderate exercise challenge and have their blood drawn before and several times after the activity. When compared to the performance of healthy individuals, genetic differences were readily apparent.
 

Firestormm

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Cornwall England
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Dr. Lucinda Bateman [ROFL - Man's hand!! :)] points to a graph that shows gene expression changes of a person with chronic fatigue syndrome following an exercise stresser, right, as compared to a person without the condition at left, in Dr. Bateman's office in Salt Lake City, Thursday, May 15, 2014.
 

Simon

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Monmouth, UK
Thannks, @Firestormm.
Their latest findings are part of a National Institutes of Health study involving about 140 patients with chronic fatigue syndrome in Utah.

...Patients were asked to perform a moderate exercise challenge and have their blood drawn before and several times after the activity. When compared to the performance of healthy individuals, genetic differences were readily apparent.

"We no longer have to rely on just the opinion or the statement from the patient that 'I feel tired,'" he said. "Instead of having to rely on the subjective measure, we now have an objective measure."

In addition to prevention, Kathleen Light said their discovery could lead to better treatment and potentially a cure. It could also increase access to those things, as many patients have trouble documenting their disabilities.
Really looking forward to seeing the paper on this large replication of their original study.

One issue with the original study (n=49) was that the 'moderate' exercise level was set at 70% of maximum heart rate, which turned out to be very hard exercise for a substantial number number of severely-affected patients. This meant that they were comparing gene expression profiles for moderate exercise in controls vs moderate-to-very hard exercise for patients. The authors did address this by comparing a sub-group (n=27) matched for effort levels and still found different levels of gene expression, though the results were less impressive than for the full sample. The much larger sample in the new study would give much more robust results, even for a sub-group matched on exercise effort.

It's great to see researchers get funding for important replication work like this, and great that the results appear to have held up. I also particularly like that they use a moderate, rather than maximal exercise test since it relates better to real-world conditions (the reason the authors chose this approach). Presumably the test could be amended so that it really is moderate for severely-affected patients too.
 
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Sasha

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Please click through to the article so it has a high hit count. We need the newspaper to understand there is interest in this topic and do more decent articles to raise public awareness.

Done! Good idea.
 

shannah

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1,429
From Page 3

On Saturday, during a meeting of the Organization for Fatigue and Fibromyalgia Education and Research, a nonprofit organization Bateman founded, she plans to announce the beginning of a fundraising campaign to build a dedicated clinic for patients who suffer with the illnesses. She said more than $1 million will be needed to hire and train physicians and develop the necessary care base, but that the timing is right.
 

SOC

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7,849
From Page 3

On Saturday, during a meeting of the Organization for Fatigue and Fibromyalgia Education and Research, a nonprofit organization Bateman founded, she plans to announce the beginning of a fundraising campaign to build a dedicated clinic for patients who suffer with the illnesses. She said more than $1 million will be needed to hire and train physicians and develop the necessary care base, but that the timing is right.
While I like that she's hoping to build a dedicated clinic -- we need many more -- I wonder where these docs and researchers think the money is going to come from. They're already bleeding us dry with their requests for donations. That well is going to dry up soon. We have GOT to find a way to get some big money donors involved.
 

Sasha

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- I wonder where these docs and researchers think the money is going to come from. They're already bleeding us dry with their requests for donations. That well is going to dry up soon. We have GOT to find a way to get some big money donors involved.

I hope we'll start to see big money donors come on board as some of the bigger fundraising drives - such as the Lipkin one - start hitting the mainstream media more widely and the two big documentaries (Jen Brea's and Ryan Prior's) start showing.

But I disagree that we're being 'bled dry' as a community. I think that these appeals can help expand the donation base. There are 1 million PWME in the US - and $1m is peanuts in that context. The MEandYou campaign raised nearly $0.5m from mainly Norwegian donors in a country with only 5 million people. It's a question of spreading the word as much as donating.

Hugely important to spread the word! :)
 

Bob

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While I like that she's hoping to build a dedicated clinic -- we need many more -- I wonder where these docs and researchers think the money is going to come from. They're already bleeding us dry with their requests for donations. That well is going to dry up soon. We have GOT to find a way to get some big money donors involved.
I can't remember the exact details, but Jen Brea raised loads of money in a single month, for a film. So I think money is out there to fund research and clinics. It's just a case of reaching a wide audience.
 

Sasha

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I can't remember the exact details, but Jen Brea raised loads of money in a single month, for a film. So I think money is out there to fund research and clinics. It's just a case of reaching a wide audience.

$213,000 in 31 days! And look at these others (from the Microbe Discovery Project site homepage):

In the past year our ME/CFS community has shown that it can rapidly raise hundreds of thousands of dollars for specific projects. After patients and supporters in Norway – with a population sixty times smaller than that of the US – raised $430,000 in 90 days for a clinical trial of Rituximab, a slew of US campaigns began crowdfunding and reached or exceeded their targets at astonishing speeds: $213,000 in 31 days for the documentary film Canary in a Coal Mine; $18,000 in 35 days for the documentary The Blue Ribbon; and $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.​

http://www.microbediscovery.org/

And particularly in the US, these sums are being raised with most PWME not knowing there's any fundraising going on! If we can get the word out and create a culture of donating, the sky's the limit.
 

A.B.

Senior Member
Messages
3,780
“Fatigue is one of the most important homeostatic mechanisms in the body. Fatigue is there to prevent you from using up your energy source.” Alan Light

It's refreshing to see such common sense, rather than portrayal of a symptom as the illness itself (I'm looking at you, psychologists/psychiatrists).
 

Simon

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Monmouth, UK
By coincidence, I put up a video about the Lights 2009 study on gene expression in CFS just one day before this article was published.

Whoa, your video rocks! Honestly, that is a terrific visual explanation of a complicated study, basically using the researchers original graphs as far as I can tell. You obviously know what you are doing.

Thank you.
 

Sasha

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That's an absolutely superb video, @SOnset!

I wonder, with videos like this, whether the last frame should be telling viewers what to do next. We need action as well as awareness. We desperately need people to donate to biomedical research.

Just something I wanted to raise - not a criticism! Just something to think about.