MAY 12, 2006 - Important Awareness Day!

Doggygirl · May 12, 2006

MAY 12, 2006
NATIONAL CHRONIC FATIGUE SYNDROME, FIBROMYALGIA, & GULF WAR SYNDROME AWARENESS DAY

I was reminded of these important topics and the Awareness Day by a former Goldenskate member who is very special to me, and probably to many others who have been members for a long time. She sent me a wonderful summary document with great information on all three of these topics, including informative web links, and also good books.

The figure skating off season is a great time to step back from our heated debates about flutzing, rotten cheatin' judges, and other lively topics, and take stock of some of life's more serious issues. I truly hope some of the younger members of GS will take initiative to become informed on some of these things that could affect you in the future. And of course the summary document and the more detailed links provide great information for anyone currently dealing with any of these three issues.

If you would like a copy of this Word document, please PM me, and include your e-mail address.

Best Regards to ALL!!

Doggygirl

Piel · May 12, 2006

THANKS DG! EVERYONE knows SOMEONE with one of these diseases. Can you post the entire document so everyone can have this information...... whether they want it or not? :biggrin:

Doggygirl · May 12, 2006

OK Piel!!

In honor of RGirl who DESERVES credit for compiling all of this information, here goes with a quite honorary long post. And for YOU Piel, a chorus line to go with it!!!

:chorus: :chorus: :chorus:

MAY 12, 2006
NATIONAL CHRONIC FATIGUE SYNDROME, FIBROMYALGIA, & GULF WAR SYNDROME AWARENESS DAY

I. Intro
II. CFS Links
III. FM Links
IV. GWS Links
V. Research Links & Articles
VI. Books

I. INTRO

"Well, you look fine!"

"These people are just faking!"

"It's all in your head!"

"Everybody gets tired. You're just getting older and can't accept it."

These are just a few things people with chronic fatigue syndrome--CFS in the US; myalgic encephalitis, ME, in the rest of the world--fibromyalgia (FM), and gulf war syndrome (GWS) hear from friends, family, and physicians. Even though at least CFS/FM have been around for as long as medical history has been recorded, the fact that neither disorder has a one, easy-to-administer diagnostic test has caused many physicians to dismiss it. However, with the advent of antidepressant medications, physicians tend to take easy refuge in writing a prescription and perhaps recommending psychological therapy.

The results of studies show that the average time it takes for a person with CFS and/or FM to get an accurate diagnosis is eight years. Imagine yourself or a loved one living for eight years, perhaps able to work, perhaps not, with symptoms and signs including, but not limited to, the following:

--Extreme and overwhelmin fatigue that doesn't get better with bed rest. Also, it is often made worse with physical or mental activity.
--CFS/FM can happen either suddenly, often after physical stress, such as the flu or a bacterial infection, or mential/emotional stress, such as the death of a loved one; or it can occur gradually over many years with symptoms coming and going until the confluence of age and stress overwhelm the patient’s neuroendocrine immune systems and suddently the person cannot function at all. Patients often describe feeling like they have the flu all the time.
--Patients with CFS/FM may also feel weak and have muscle pain, difficulty focusing, and/orinsomnia. The person’s entire sleep-wake cycle is often disordered, with the patient unable to sleep at night and only during the day. CFS/FM patients also tend to go through periods during which they may sleep for as long as 30 hours at a time, getting up only for the bathroom. This can last weeks, months, sometimes years. Patients may then experience the opposite, finding it very difficult to sleep at all.
--After CFS/FM patients engage in physical activity or exert themselves mentally, they may feel tired for more than 24 hours. The extreme fatigue may then come and go, giving them times when their energy level is normal. Sometimes, though, the extreme fatigue never stops, leaving them feeling exhausted and depleted all the time.
--Exercise as simple as walking or stretching often causes severe muscle pain with burning in the extremities that never adapts to continued exercise. Some CFS/FM patients may build strength if they can stand the pain, but apparently endurance never improves.
--Sometimes CFS goes away on its own or a person can have long periods of time, months or even years, without symptoms. But those who have treated CFS/FM for almost 50 years have found it to be a chronic disorder that will return sometimes under a stressful situation and sometimes for no discernable reason.

Besides extreme fatigue and weakness, CFS symptoms include:
--Headaches of a new type, pattern, or intensity
--Tender lymph nodes
--Sore throat
--Esophageal spasms and severe gastric reflux
--Muscle pain or aches
--Pain or aches in several joints with or without swelling or redness
--Not being able to concentrate, focus, or remember simple things, such as a phone number
--Feeling tired even when sleeping
--Feeling pain, discomfort, or "out-of-sorts" after physical exertion
--Thyroid (usually hypo), pituitary, hypothalamic, and other endocrine (glandular, hormonal) disorders.
--Ocurrence of inexplicable disorders such as anemia and other blood problems; porphyria; burning, itching, and/or lesions of the scalp; extremely pink inflammation of the cheeks, nose, and chin; renal colic (severe kidney pain); extreme sensitivity to temperature; development of food allergies; allergies in general and/or a history of allergies as a child; systemic yeast infections; urinary tract infections; for women, endometriosis; for both men and women, problems with fertility; loss of libido; weight gain (the average is 32 LB), though some lose weight; and many, many more idiosyncratic disorders.

The typical age for someone to first experience the symptoms of CFS or FM used to be in the late 40s, early 50s. Now CFS/FM specialists are seeing new patients who are all 15 to 17 years old and younger. As you will find if you read on to "The Misery Index," CFS may truly be characterized as the zombie disease.

Gulf War Syndrome has shown the medical and military community in a similarly bad light. The results of studies showing an organic cause for GWS were shredded while the Pentagon pushed "psychological and psychiatric issues" as the cause for GWS. Will we see another epidemic of GWS after Operation Freedom? Or was there something specific to Desert Storm that caused tens of thousands of troops to come home disabled permanently? Nobody knows because, again, people with these diseases were dismissed as malingerers or as having psychological problems.

Imagine if you, your loved one, or your child had the flu or some kind of stressful incident from which they normally would recover in a week or so, but didn't. Imagine that you or they never recovered but only got worse, that they started coming down with everything from bone-crushing fatigue to unusual diseases such as porphyria and every physician you saw said, "I'm going to refer you to an excellent specialist, a psychiatrist." If it was your loved one or child, wouldn’t you put as much energy as possible into finding out what was causing this constellation of strange disorders? But what if your child is in her 40s and you're in your 70s with your own health problems to deal with? What if it's you and your spouse leaves you after a year or so of battling a disease with no answers and only accusations of being lazy or crazy? How could you fight for yourself if you couldn't get out of bed and were losing significant amounts of brain matter--what people with CFS/FM call "brain fog"—so that you couldn’t even organize your thoughts as to what to do and reading a book that used to take you a day or two now takes months of exhaustive reading?

Think just for a moment if you could no longer work, if disability payments were insufficient to pay the mortage or rent, if your family and friends were sick and tired of your being sick and tired; think for a moment if you lost everything to a disorder that physicians were dismissing as “all in your head”; if you didn’t even have the energy to fight something you didn’t even have a name for. For those who have CFS, FM, or GWS, this is exactly what most of them go through. Stories selected for publication tend to be selected because they have an “upbeat,” i.e., positive, ending. Sadly, the stories that don’t get told are the ones you’ll find in Internet forums for these disorders, in the story of a woman with CFS who committed suicide and wanted to leave her body to science for the study of CFS. True, the autopsy interferes with some of the organs, but there would be plenty left to study. Nobody, not one medical school or physician, wanted it.

I hope you will take the time to look up one or more of the organizations listed below or perhaps check out one of the recommended books. Because of the problems with diagnosis, not even the Centers for Disease Control or the National Institutes for Health know with any degree of accuracy how many people are afflicted with CFS, FM, or GWS. However, it is estimated that CFS alone afflicts 800,000 to 1,000,000 people in the US alone. You may know someone who has one of these disorders and be unaware of it.

Of course these days it seems like, and is in fact, that there is a problem everywhere you turn with organizations asking for your donation or time. The purpose of today, however, is that you only beccome aware of these diseases; and if you are already aware, to become more familiar with the toll taken on those afflicted with them. Awareness of CFS, which used to be called just plain "chronic exhaustion" has actually decreased since the 1950s. Imagine how frustrating it would be to have a disorder in which the medical and general understanding of the disease that has destroyed your or a loved one's life had gone backwards over the last 50 years. Please help reverse that trend.

II. CFS LINKS

CFIDS Association of America
http://www.cfids.org/

Centers for Disease Control and Prevention: CFS
http://www.cdc.gov/ncidod/diseases/cfs/

Womenshealth.gov: Chronic Fatigue Syndrome
http://www.4woman.gov/faq/cfs.htm

Chronic Fatigue Syndrome, CFIDS & Fibromyalgia
Aka Clymer Healing Reseach Center
http://www.chronicfatigue.org/

Fibromyalgia and CFS
http://chronicfatigue.about.com/

International Association for Chronic Fatigue Syndrome
http://www.aacfs.org/

ImmuneSupport.com: Fibromyalgia and Chronic Fatigue Syndrome Resource
http://immunesupport.com

Medline Plus: Chronic Fatigue Syndrome
http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html

ME (Myalgic Encephalitis)/CFS & Fibromyalgia Information
http://www.co-cure.org/

III. FIBROMYALGIA LINKS
Fibromyalgia Network
http://www.fmnetnews.com/

Medline Plus: Fibromyalgia
http://www.nlm.nih.gov/medlineplus/fibromyalgia.html

National Fibromyalgia Association
http://www.fmaware.org/

The American Fibromyalgia Syndrome Association
http://www.afsafund.org/

IV. GULF WAR SYNDROME LINKS
Gulf War Syndrome
http://www.biofact.com/gulf/

Captain Joyce Riley: Gulf War Syndrome
http://www.all-natural.com/riley.html

Frontline: Last Battle of the Gulf War
http://www.pbs.org/wgbh/pages/frontline/shows/syndrome/

Gulf War Syndrome Cover-Up
http://mediafilter.org/caq/Caq53.gws.html

Gulf War Syndrome and Depleted Uranium: Research into GWS
http://www.ccnr.org/bertell_book.html

Office of the Special Assistant for the Gulf War Illnesses
http://www.gulflink.osd.mil/

V. BOOKS
There are many books on these subjects. The following is just a sampling in no order of importance or recocmmendation.

CHRONIC FATIGUE SYNDROME

1. Living Well with Chronic Fatigue Syndrome and Fibromyalgia : What Your Doctor Doesn't Tell You...That You Need to Know (Living Well) -- by Mary J. Shomon, 2001
2. Chro Chronic Fatigue Unmasked: What You and Your Doctor Should Know About the Adrenal Syndrome, Today's Most Misunderstood, Mistreated and Ignored Health Problem– by Gerald R. Poesnecker ND, DC Besides Amazon, BN, and other new and used bookstores, this book can also be ordered through the Clymer Healing Research Center
http://www.chronicfatigue.org/
3. Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, et al, 2001
4. Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Journeys with the Dragon by Naida Edgar Brotherston, 2001
5. Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome by Peggy Munson (Editor), 2000
6. Adrenal Fatigue: The 21st-Century Stress Syndrome -- by James L. Wilson, Jonathan V. Wright, 2002
7. The Cortisol Connection: Why Stress Makes You Fat and Ruins Your Health - And What You Can Do About It -- by Shawn M. Talbott, William Kraemer, 2002
8. Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome -- by Sue Jones, 2002
9. DVD or VIDEOTAPE: I Remember Me, a documentary about the personal and political problems suffered by both patients and physicians trying to treat those with CFS; directed by Kim Snyder, with Michelle Akers, 2001.

FIBROMYALGIA

1. What Your Doctor May Not Tell You About Fibromyalgia : The Revolutionary Treatment That Can Reverse The Disease -- by R. Paul St. Amand, Claudia Craig Marek, 2006
2. Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) -- by Devin J. Starlanyl (Foreword), Mary Ellen Copeland, 2001
3. Fibromyalgia for Dummies -- by Roland Staud, Christine A. Adamec, 2002
4. The First Year--Fibromyalgia: An Essential Guide for the Newly Diagnosed (The First Year Series) by Claudia Craig Marek (Foreword), 2003
5. The Fibromyalgia Advocate by Devin, 1998
6. The Complete Idiot's Guide to Fibromyalgia by Lynne Matallana, et al, 2005

GULF WAR SYNDROME

1. Gulf War Syndrome : Legacy of a Perfect War -- by Alison Johnson, 2001
2. Gassed in the Gulf: The Inside Story of the Pentagon-CIA Cover-Up of Gulf War Syndrome -- by Patrick G. Eddington, 2000
3. Second opinion Dx Gulf War syndrome -- by Pamela Kaires, 2000
4. Gulf War Syndrome: A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References by Icon Health, 2004

VI. RESEARCH PUBLICATIONS AND ARTICLES
PubMed Medline
PubMed Medline is a service of the US National Library of Medicine that includes over 16 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed

A Sudden Illness -- How my Life Changed by Laura Hillenbrand
Article by the author of Seabiscuit concerning what it’s like to get CFS while in college and how she managed to write Seabiscuit. Excellent first person account.
http://www.cfids-cab.org/MESA/Hillenbrand.html

ImmuneSupport.com
The Misery Index by Hillary Johnson
http://www.immunesupport.com/library/print.cfm?ID=184&t=CFIDS_FM
04-25-2006 "Although 11 years old, this still stands out as one of the most interesting articles we have ever published on ImmuneSupport.com." Rich Carson, Founder and CFS Patient
Despite the government's stance and the disease's name, CFS has one of the highest morbidity rates (degrees of suffering) of any illness, rivaling the physical misery of advanced cardiac disease and cancer. Dr. Phillip Peterson, head of the infectious-diseases department at Minneapolis's county medical center, opened a CFS research clinic there in 1988. The average age of the clinic's patients was then 38, and 80% were women. "Roughly half the patients could walk only three blocks or less," Peterson says. He and his collaborators explored the "functional severity," or degree of disability CFS imposes, using the Medical Outcome Study, in which a score of 100 is "best health." They compared their patients' scores with those of healthy people and people who had suffered a heart attack or who had rheumatoid arthritis. Healthy people scored an average of 75, heart attack patients in the mid-40s and victims of rheumatoid arthritis slightly higher. Clinic patients scored, on average, 16.5, a level never before measured on the Medical Outcome Scale. University of Minnesota medical professor. Dr. Nicole Lurie had to redraw the scale to accommodate the CFS patients for a formal paper Peterson used on the subject. A 1991 study, published in the Journal of Clinical Psychiatry, compared the severity of CFS with that of multiple sclerosis, lupus, and Lyme disease and found CFS to involve significantly more debilitating fatigue.
By Hillary Johnson. Excerpted from her article "The Invisible Epidemic," Working Woman Magazine, Dec. 1994.
©2006 Pro Health, Inc. Copyright Policy
By: http://www.ImmuneSupport.com

Two Studies Find Gray Matter Reduction in CFS Patients
Results of studies demonstrating conclusively that the “brain fog” experienced by virtually everyone with CFS and/or FM is due, at least in part, to a reduction in brain matter. Compared to normal controls, brain matter in CFS patients was found to be from 8% to 11% lower.
http://www.immunesupport.com/library/print.cfm?ID=7054

ImmuneSupport.com
New evidence that genetics are responsible for Chronic Fatigue Syndrome by Emily See
http://www.immunesupport.com/library/showarticle.cfm/id/7142/searchtext/genetic/
05-02-2006 Research published in the April 2006 issue of the journal Pharmacogenomics presents the first scientific evidence that genetics are responsible for Chronic Fatigue Syndrome.
The groundbreaking study, called the CFS Computational Challenge, or C3, was developed by the Center for Disease Control and Prevention’s principal CFS researchers, Dr. Suzanne Vernon and Dr. William Reeves. This is the most detailed and comprehensive clinical study on CFS to date, and, says Dr. Julie Gerberding, Director of the CDC, presents “the first credible evident of a biological basis for chronic fatigue syndrome.”
C3 evaluated a sample of the population of Wichita, Kansas, of which 227 participants had CFS. Participants in the study underwent a series of tests including detailed clinical evaluations, measurements of sleep physiology, cognitive function, autonomic nervous system function, blood and urine testing. Four individual teams, each comprised of medical experts, molecular biologists, mathematicians and engineers, independently examined the resulting 500 clinical measures and 20,000 measures of gene expression, the process by which genes regulate cell activity.
Their findings, published in a collection of 14 papers released last week, demonstrated that CFS patients were twice as likely to have high levels of allostatic load as people who did not have CFS. Allostatic load is a complex stress measure of hormone secretions, the accumulated wear and tear on the body.
Additionally, Dr. Reeves said, CFS patients consistently exhibited particular genetic sequence variations “in certain genes that are related to those parts of the brain activity that mediate stress response.” Those individuals with CFS “have different gene activity levels that are related to the body’s ability to adapt to challenges and stresses that occur through life, such as injury and trauma,” continued Dr. Reeves.
The genetic variations between those individuals with CFS and those without the disease occur in the hypothalamus-pituitary-adrenal axis (HPA), which affects the body’s ability to withstand stresses such as injury and infection.
“Our working hypothesis is that the HPA axis and the brain is (sic) a plastic organ which changes its actual physical architecture, depending on how stress is accumulated over a lifetime,” Dr. Reeves explained. “To some extent, genetics determine how you react to these stressors, and, more important, they actually determine your subsequent reaction to stress later during the life span.”
Researchers identified at least three very different molecular profiles, or subtypes, of CFS. Distinction between the classifications includes genetic variations, and symptoms of the patient. The first group was characterized by extreme fatigue; the second was characterized by heart-rate variability, differences in cortisol, and sympathetic nervous system differences; the third was primarily menopausal women. “We targeted about 50 genes and about 500 polymorphisms in genes that are active in the HPA axis,” said Dr. Vernon. “Of those 500 polymorphisms, five on three genes were very important, not by themselves, but together: the glucocorticode receptor, the serotonin, and tryptophan hydroxylase. The three genes distinguished the three fatigued groups from those that were not fatigued, and two of those genes distinguished between the fatigued groups.”
This research is part of a cluster of studies published since September, 2005, which indicate that genetics are a contributing factor to CFS. Although there have been several studies over the last decade identifying certain physiological traits of CFS patients, heretofore they have failed to identify traits that are common to all CFS sufferers.
The results of the C3 study are good news for those dealing with CFS. The findings will increase the ability to predict who is susceptible to the disease, and mark an important step forward in CFS research. “Knowing the molecular damage involved will help us devise effective therapeutic intervention and control strategies,” said Dr. Vernon, and will “help us identify better ways to more effectively diagnose the illness, and to come up with more effective treatments,” continued Dr. Reeves.
The next step is to attempt to replicate these results in another study. First, the CDC is taking a different approach to analyzing the Wichita sample, with the aim of verifying the results. Currently, a team of researchers are collecting data on CFS from a population sample of 30,000 people in Georgia. Later this spring, the CDC is launching a media and education campaign to promote CFS awareness. “There is no questions that chronic fatigue syndrome is a real condition,” says Dr. Reeves. “It is a serious public health problem. Most people aren’t aware they have it. A lot of the stress of our research is getting them into treatment.”
To read the complete interview click or paste this link into your browser.
http://www.immunesupport.com/library/showarticle.cfm?id=7141&T=CFIDS_FM

ImmuneSupport.com
Abstract: Genetics of fibromyalgia
http://www.immunesupport.com/library/showarticle.cfm/id/6713/searchtext/genetic/
09-15-2005 Curr Pain Headache Rep. 2005 Oct;9(5):313-5.
Buskila D, Neumann L.
Department of Medicine "H", Soroka Medical Center, P.O. Box 151, Beer Sheva 84101, Israel. [email protected].
The pathogenesis of fibromyalgia (FM) and related conditions is not entirely understood. Recent evidence suggests that these syndromes may share heritable pathophysiologic features. Familial studies suggest that genetic and familial factors may play a role in the etiopathogenesis of these conditions. There is evidence that polymorphisms of genes in the serotoninergic and catecholaminergic systems are linked to the pathophysiology of FM and related conditions and are associated with personality traits. The precise role of genetic factors in the etiopathology of FM remains unknown, but it is likely that several genes are operating together to initiate this syndrome. Larger longitudinal studies are needed to better clarify the role of genetics in the development of FM.
PMID: 16157058 [PubMed - in process]

Mathman · May 12, 2006

Thanks for posting this Doggygirl. Our mutual friend :love:

sent me some material of a related nature a couple of years ago that helped me get through a bad spell in my own life.

MM

Piel · May 12, 2006

Thanks again DG and RG.

May I add that these diseases don't get races, ribbons, bracelets, and telethons to draw attention to them and raise money for research.

Grgranny · May 12, 2006

Even I didn't know about this. My son, Janet, and I all have fibromyalgia and Janet has CFS. My son wears his tens unit all the daytime. I am one of those people that they sent to a Psychiatrist. What a waste of time and money. I still get really disgusted with them.

MAY 12, 2006 - Important Awareness Day!

Doggygirl

Piel

On Edge

Doggygirl

Mathman

Piel

On Edge

Grgranny

Da' Spellin' Homegirl

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