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Dr Bell is trying to trace his former patients

Summer

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Dr. David Bell Calling Original Lyndonville Kids

Dr. David's Bell's current (Oct 2009) Newsletter is worth a complete read, but he is putting out this call:

Lets revive the Lyndonville research group again (gasp). I would like to test the original Lyndonville kids for XMRV, and if any of you reading this became ill in the Lyndonville area around 1985, were 18 or under at the time, and want to be evaluated, please write to me at lynnews@davidsbell.com. Even if you are feeling great now.

http://www.davidsbell.com/LynNewsV6N2.htm
 
K

_Kim_

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update on Dr. David Bell

Dr. Bell's classic book on CFS, Andrea's Revolver (2000), is available again with all proceeds going to ME Research. The book was dedicated to Elaine DeFreitas and to the memory of Skye Kristina Dailor (1976-1990).



Also, Dr. Bell's November issue of the Lyndonville News is out. He is now selling tickets via paypal through his website to his Public Lecture, December 6, 2009 in Batavia, NY on XMRV and ME/CFS.

I do not want to get people's hopes up too high. Officially I will say that the association between XMRV and CFS/FM/ME is "being studied and has not been proven". I will have no new information on treatment, just ideas of where this may go. We will not be taping the lecture as it is expensive and I expect the material is likely to change rapidly over the next six months. Material will be presented from the Science paper, Dr. Dan Peterson's testimony at the CFS Advisory Committee meeting, our hopes for a study to help confirm these findings, and lots of interesting stuff.
 

dipic

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Huh, I own "A Disease of a Thousand Names", "The Doctor's Guide to CFS", and "Cellular Hypoxia and Neuro-Immune Fatigue" (all by Bell) but I've never heard of this one. I'll be glad to pick this up, especially since Dr.Bell was kind enough to donate the proceeds to research. :) Thanks for sharing, Kim.
 

flybro

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Took this from here
Bell conducted follow-up studies of his original patients 13 years after the Lyndonville Outbreak. He's been in contact with about 40 of them and has not been able to find the other 20.

Any of Bell's former patients with whom has not been able to contact and who want to participate in the follow-up should call (585) 765-2099.
 
K

_Kim_

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The article that flybro mentions is the first of a two-part story that was published in today's Batavia News.

Discovery sheds light on a medical mystery and Pediatrician lauds 'extraordinary' study

Dr. Bell's statement of the cause of "tiredness" in CFS caught my attention. Is there a consensus among the CFS researchers that tiredeness is due to low blood flow to the brain? What about the mitochondria? Or VOX studies? If what he says is correct, why don't I feel less tired when I lie down?

The tiredness linked to CFS is caused by a reduction of blood flow to the brain. That decrease in circulation occurs when someone with CFS is either sitting or standing and can only be relieved by lying down, Bell said.

The doctor said the blood flow in people with severe cases of CFS can be as low as people with terminal heart disease.
 
R

Robin

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The article that flybro mentions is the first of a two-part story that was published in today's Batavia News.

Discovery sheds light on a medical mystery and Pediatrician lauds 'extraordinary' study

Dr. Bell's statement of the cause of "tiredness" in CFS caught my attention. Is there a consensus among the CFS researchers that tiredeness is due to low blood flow to the brain? What about the mitochondria? Or VOX studies? If what he says is correct, why don't I feel less tired when I lie down?
From what he said at his lecture, the low blood volume, pressure, and orthostatic intolerance are part of the problem. He went into more detail about the post exertional malaise, explaining that we have very sloooooooooww recovery times. A modest exertion requires hours if not days of recovery. He didn't mention mitochondria or VOX but it was a brief lecture!

I'm not sure if there is a lack of consensus about the cause of "tiredness"; more likely a lack of data. The Pacific Fatigue lab which actually studies the "fatigue" in CFS has very little funding and doesn't publish much. :(