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ChronicFatigueSyndromeSupport.com

11-15-2006

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   ProHealth Treatment & Research News
November 15, 2006
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Founder's Corner
Rich Carson

How serious is Chronic Fatigue Syndrome?

The Centers for Disease Control & Prevention launched its $4 million CFS physician education and public outreach campaign at a well attended Washington D.C. press conference November 3, 2006. The three-hour event was led by CDC Director Dr. Julie Gerberding and Dr. John Agwunobi, Assistant Secretary for Health and Human Services. Also in attendance were CFIDS Association of America President Kim McCleary, many leading CFS researchers and clinicians, numerous CFS patients, and members of the press. Several facts and findings about CFS were publicly announced, and if you are like me, I think you will be a little surprised. Consider the following:

n One million - Number of patients afflicted by CFS in the United States

n 16% - Proportion of people with CFS who have received a diagnosis

n At least 25% - Proportion of CFS patients who are disabled/not working

n $20,000 - Average annual lost income for CFS patients' families

n $9.1 billion - Annual cost to the U.S. economy in lost wages & income from CFS

n 10 or 20 genetic aberrations - Reason most patients were susceptible to CFS

n AIDS; MS; COPD; End Stage Renal Failure - Diseases with a level of suffering and disability similar to that of CFS.

These findings add perspective to what many patients know all too well: that CFS is real, that it is serious, and that it is frequently misunderstood by others as being just a "fatiguing" type of illness. You may even want to print this information to use as a handy reference tool when you're discussing CFS with your friends, family, and doctors. I'm afraid that even they may not realize the magnitude of suffering that patients experience.

I was surprised that at least 25 percent of patients are disabled. And I was surprised to learn that only 16 percent of patients in the U.S. have actually received a CFS diagnosis - which is particularly hard to understand considering that CFS causes the same level of disability as patients suffering from AIDS, multiple sclerosis, chronic obstructive pulmonary disease (COPD - the fourth leading cause of death in the U.S.) and end stage renal failure (terminal kidney disease). I wonder how much money the government spends every year to research those diseases.

The take-away from this is that CFS is just now earning the respect it deserves. Respect generates additional research funding, and that will lead us to effective treatments and eventually a cure.

Meantime, go to the CFIDS Association site ( www.cfids.org) to check out video highlights of the campaign kickoff, or read a full transcript of the presentations. And above all, take good care of yourself - it is more important than most of us think. Get plenty of sleep, eat a good diet, and avoid stress.

Keep the faith,

Rich Carson
Patient, CFS and FMS fundraiser, and founder of ProHealth


Current Research News

Major Study Links CFS to "Bad Bugs," Not Psychology

Australian researchers report 10% of the hundreds of patients infected with three bad "bugs" they've studied developed CFS. And the only factor that correlated with likelihood of developing CFS was severity of sickness at onset of infection.   more


Advice From the Experts

CFS as Heart Failure Secondary to Mitochondrial Malfunction - A Protocol

Do CFS symptoms stem from a type of "heart failure" associated with inefficient energy production in the cells? UK-based CFS specialist Sarah Myhill, MD, believes they do. Her "patient handout" outlines a beneficial nutritional protocol based on the work of several eminent CFS researchers.   more


 Update on Dr. Derek Enlander's CFS & FM Treatment Formula

Dr. Derek Enlander, a leading international CFS/FM specialist now based in New York, explains the guidelines and formula he has developed to help treat his patients' symptoms.*   more


Clinical Guidelines to Differentiate CFS from Depression & Anxiety

Eleanor Stein, MD, FRCP, a Canadian psychiatrist specialized in diagnosis and treatment of anxiety and depression in CFS patients, offers free guide to CFS for psychiatrists.   more


Disability Information and News

Tackling Social Security Disability Insurance Applications

The SSDI system is not set up for helping patients with immuno-neurological disorders such as CFS. So what do we do? An analysis of the problem, and practical advice from a disabled patient-advocate.*   more


CFS Research Abstracts
Letters From Our Readers

On the Name Change

My strategy to avoid doctors' eye rolling

Let's work on finding that celebrity spokesperson

Dr. Jason on Fukuda vs. Canadian Case Definition of CFS

Might not hurt to get things rolling in Canada, too

Good Thoughts & Bright Ideas

Thanks, you have changed my life

New research in the new catalog

On browsing back issues

CFS subsequent to Human Parvovirus

More...


Patient Perspectives

You are Not Your Illness

Rather than focusing on what we can no longer do, we need to look inside and build on the qualities that make us who we are, FM patient Karen Richards has learned. Formerly a dancer, she is now the inspiring editor of About.com's Guide to Fibromyalgia and Chronic Fatigue Syndrome.*   more


Hate that blank space in the doctor's form asking for "occupation"?
Try being a "CPCP"

By Leeza Behar, another former dancer, and FM patient extraordinaire.*   more


Weekly Inspiration

The leaves are down, and touching the soaked earth; Giving off the odors that partridges love.
-Robert Bly

Making New Covenants With the Self

Illness is often thought of as a journey. I think of it as an outpost, a place of remove. Its loneliness challenges, but this same isolation is a buffer. There's plenty of time to think, to reevaluate, make new covenants with the self about habits, priorities, work, relationships. In a sense it's the easy place to be because it's a place of imagining. The return is the hard part. I face the task of making real what has been imagined, constructing a life that supports health.

From Encounters with the Invisible
By CFS patient Dorothy Wall, Southern Methodist University Press, 2005


Your Feedback Counts!

At ProHealth we are committed to bringing you the most up-to-date information on Chronic Fatigue Syndrome and Fibromyalgia. We are always striving to improve our services, and your opinion counts. If you have any comments, suggestions or ideas, please let us know. Include your full name if you agree that we might share your letter with other readers.

Send Us Your Feedback


About ImmuneSupport.com

Published by ProHealth, Inc., ImmuneSupport.com is the Web's largest resource for Fibromyalgia and Chronic Fatigue Syndrome. Since 1988, ProHealth has raised and donated over 2.5 million dollars to CFS and FM research and advocacy groups seeking a cure. We believe in "commerce with compassion."

Every purchase made at ImmuneSupport.com funds research - as does every purchase made from ProHealth's Health Resource catalog.

Visit ImmuneSupport.com


* Note: This article first appeared in last week's FM Edition of CFS & FM Treatment & Research News (Nov 8, 2006)

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