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Tuesday, November 10, 2009

The Fibromyalgia Wellness Project: A research project by Coolinge and Associates - it's free and it might help



"Welcome to the Fibromyalgia Wellness Project, a research study sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health. This project is conducted by Collinge and Associates, an independent research organization directed by William Collinge, PhD. The project is now inviting participation by people living with fibromyalgia."

This is helping me, when I remember to make the daily entries!

You will need to allow a little time to get signed up, and then a little more for the learning curve on how to use the website. But it's pretty intuitive and easy to learn.

Sunday, November 1, 2009

XMRV retrovirus: not just for ME/CFS

1/29/12 Update: 

UPDATED: In a Rare Move, Science Without Authors' Consent Retracts Paper That Tied Mouse Virus to Chronic Fatigue Syndrome


 I spent the morning of 10/23 trying to understand what this new XMRV research is, and what it means. I wanted to include a picture of the virus but couldn't find one I liked except for the heavily copyrighted image by the Whittemore Peterson Institute, shown on the main page of the Phoenix Rising XMRV Info Center (a most excellent source, and with real-time updates). I didn't figure the WPI was going to grant the little ol' ICIE Blog permission to use their cross section image any time soon, so I waited to post this until I could draw one myself. Luckily for all of us, I found a really good image today on SlantedScience.com:


Aren't those fuzzy Cheerios-looking things just wild?

Anyway, turns out XMRV could be related to several illnesses including Fibromyalgia. This post contains the gist of what I came up with in my search for information that I could understand about it; maybe it will save someone else some time and energy in trying to figure it out.

First and foremost, I like these links from Adrienne Dellwo's About.com Guide to Fibromyalgia & CFS the best because: You got it, they're easy to understand. I wasn't much interested in science in general before I got sick, and I have an even harder time understanding it now that I've been sick for 20+ years and my gray matter has probably shrunken considerably.
Check the XMRV Discovery Series Index for future posts from Adreinne on this topic.


Dr. David S. Bell of the Lyndonville News' take on XMRV:
In this issue of Lyndonville News I will briefly repeat what has been reported in the Science paper and the press releases. But most of all I want to predict where this is going. I am using the "force" here. I have no special or inside information from the Whittemore-Peterson Institute. They have to be cautious and circumspect. I don't. I am an old man sitting on my porch rocking chair, desperately trying to retire; I will say what I think is true.

...
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."
*In 1985 nearly 220 persons became sick with an illness that came to be called chronic fatigue syndrome, in the communities surrounding Lyndonville, New York where Dr. Bell practices medicine. This illness cluster began a study of the illness by Dr. Bell that will apparently continue in spite of his attempts at retirement. He seems like a really caring and astute physician.


Dr. Jacob Teitelbaum's take:
"But why is this article getting so much attention, even being picked up by the NY Times (which has in the past called CFS the “Yuppie Flu”). I find it interesting to watch the politics. For starters, as some nitwits out there still like to make believe CFS is "all in people’s heads," this study, along with dozens of others, again confirms just what nitwits they are. But don’t expect a study in Science or the truth to sway their thinking anytime soon. Perhaps eventually they will learn they can offer "coping counseling" CBT in any severe disease (e.g., cancer, MS, etc.), without trying to invalidate the physical nature of the illness and imply people are nuts because they are ill.
Why else might this research get more attention? Could it be because the AIDS drugs used for that virus cost over $10,000 per year (multiply by over 2 million in the U.S. alone with CFS = $20 billion = CaChing!), and I suspect this will help to push it along. An exercise in how things work ;-)"

Other links I think are good:

Whitmore Peterson Institute for Neuro-Immune Disease - overview of their XMRV research

CFIDS Association of America: Landmark CFS research reported in Science magazine

Science magazine search results for "XMRV"

10/9/09 NY Times article

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