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Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivities Personal Stories and Reports

Chronic-Illness.org — Tue, 08 Feb 2011 19:44:01 +0000

Personal Stories & Reports (revised)

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Chronic Fatigue Syndrome

Environmental Illness

Fibromyalgia

Multiple Chemical Sensitivities

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Articles & Resources

PWC Hallie Kretsinger’s Watercolors Raise Money for CFIDS

The story of how PWC Hallie Kretsinger’s watercolors have helped in the efforts to raise money for CFIDS.

Creating hope with ‘happy post’

An article about a UK teenager with CFS — Vikki George — who started the Post Pals service for sending postcards to sick children.

Post Pals – Post a smile on a sick child’s face

Post Pals — the Web site for the “postcards for sick children” service founded by teenage CFS victim Vikki George.

Hollywood Legend Blake Edwards, PWC

Information on Blake Edwards, a PWC for more than 20 years, and his honorary Oscar, plus links to a video clip featuring Edwards’s comments about his struggle with CFIDS from “I Remember Me.”

A dead horse rescued me

An interview with Laura Hillenbrand, author of Seabiscuit.

Author of ‘Seabiscuit’ endures rough ride

An article about Laura Hillenbrand, the author of “Seabiscuit” who has CFS. The article was written after the publication of her book and shortly before the release of the film based on the book.

Betting on Seabiscuit

An article that originally appeared in the December 2002 issue of Smithonsonian Magazine about how, despite her chronic fatigue syndrome, Laura Hillenbrand beat the odds and wrote a bestseller.

CFIDS Advocate Tom Sheridan

Tom Sheridan of The Sheridan Group is a Capitol Hill lobbysit and advocate for CFIDS causes.

Spotlight on Dr. Lucinda “Cindy” Bateman

An article about Dr. Lucinda “Cindy” Bateman, a doctor who (as of 2005) has spent more than 15 years working with patients who have CFIDS and Fibromyalgia. Dr. Bateman is the co-founder and executive director of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research.

SupportME.co.UK

Established by a recovering M.E./CFS sufferer, this site is an online resource for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome, and Fibromyalgia resource.

Chronic Fatigue Syndrome? or Chronic Mercury Poisoning?

Jeff Clark’s personal site that includes articles about his claims he was cured of Chronic Fatigue.

Personal Stories

Chronic Fatigue Syndrome robs its victims of their chances to lead normal lives. These are first-person PWC accounts of how devastating the illness has been to the patient, written on a very personal level, often with details about how CFS / CFIDS / ME has affected family life and relationships, friendships, ability to work, social life, and other things that most people take for granted.

Quotes on “How Did Your Chronic Fatigue Syndrome Start?”
CFS Victims Relate Their Personal Experiences

My Before and After Story by Becca Brasfield, PWC

Becca’s CFIDS diagnosis came after she received radioactive iodine treatment for a growth on her thyroid. Now unable to work, Becca also relates how she must and does cope with short-term memory problems and other changes and problems in her life because of CFS.

The All-consuming Monster by Teri Van Horn, PWC

For Teri, CFIDS began to impact her life after she was recovering from a staph infection. Frank in her discussions about the lack of support from family members who call her lazy (“No one is that tired all the time.”), her Vistide treatments, career changes and choices, and having to discontinue caring for the horses she loves, Teri relates how being a PWC has changed her life.

What is the “fatigue” like in “Chronic Fatigue Syndrome”?

An essay by Mary Schweitzer detailing the differing levels of “fatigue” as she’s experienced them.

A Personal (CFIDS) Story by Taffy Todd, PWC

Taffy relates how she’s able to work a flex-time job created for her by a local vocational rehabilitation program.

Relationship Stories:

Loving and/or Living with Someone with CFS/FMS/MCS

These Chronic Fatigue Syndrome, Fibromyalgia, and/or MCS stories are first-person accounts of what it’s like to love or care for someone with CFS or FMS. These storeis are written on a very personal level, often with details about the everyday realities of how CFS / CFIDS / ME / FMS / MCS affects family life and relationships, friendships, social life, and other things that most people take for granted.

CFIDS from a Husband’s Point of View by Robert Joe Stout

A husband’s compassionate account of how CFIDS has changed his wife’s life, and by association, changed his as well. He discusses treatments she’s tried (chiropractors, water aerobics, gamma globulin, antidepressants, muscle relaxers, Hitachi mushroom pills, herbs to control her adrenalin flow) and ignorant comments from others that she’s endured.

Falling for a Person with CFIDS by Sam Oldham

Sam Oldham relates his story of his relationship with Victoria, a highly functioning PWC who is about to complete college and begin work on her master’s, and works full time at a medical malpractice company and as a staff writer for a local magazine

Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivities Personal Stories and Reports is a post from: Chronic Illness.org

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May the (Organic) Source Be With You

Chronic-Illness.org — Mon, 21 Jun 2010 04:37:23 +0000

Many who must cope with the allergies and food sensitivities that often accompany Chronic Fatigue Syndrome (CFS, CFIDS), Multiple Chemical Sensitivities (MCS aka Environmental Illness), and/or Fibromyalgia (FM, FMS) have to go through some trial and error to discern what eating plan will work best for them. Many follow the eating plan with a specific food choice agenda like the Specific Carbohydrate Diet™ — which is proven helpful for those who have the Irritable Bowel Syndrome (IBS) problems that often accompanies Fibromyalgia (or ulcerative colitis, Crohn’s Disease, and other digestive diseases as well), while others take a more relaxed approach to meeting their nutritional requirements, One thing that most experts agree all sensible eating plans have in common is that organic and all natural foods free of chemical additives and preservatives are the healthiest food choices.

Thanks to The Store Wars Veggie Tales-style animation, Chewbroccoli and a galaxy of other characters can help educate you and your family about the benefits of organic foods. The animation even has a “salad bar” cantana sequence!

It doesn’t end there. Unless you’re fortunate to have a store like Whole Foods Market in your neck o’ the woods, finding organic products isn’t always an easy task. More and more supermarkets are adding some organic foods to their store selections, but as anyone who doesn’t have the time and energy to read each and every label can attest, those selections are limited. (Until recently, none of the local supermarkets in my “farm country” smalltown Ohio area have preservative-, nitrite-, or nitrate-free deli meats, for example. So, if I wanted bacon, ham, salami, or other deli cuts, I had to rely on my niece bringing some with her when she visits from Atlanta or a nephew picking some up for me in Detroit — or I had to order directly from the Wellshire Farms Web site. While choices are still limited — and unfortunately far more expensive than regular deli meats, Kroger and WalMart now carry such brands as Hormel® Natural Choice® lunch meats and bacon.)

While the choices may not be certified organic, most local farmer’s markets do have vendor’s who sell locally grown, pesticide-free produce. Another way to find sources of organic foods is to visit The Organic Trade Association Web site; they’re the organization responsible for the “Store Wars” animation and they have an extensive organic foods directory available on their site.

May the (Organic) Source Be With You is a post from: Chronic Illness.org

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Details on the Specific Carbohydrate Diet™

Chronic-Illness.org — Wed, 09 Jun 2010 05:19:28 +0000

by Bernie aka TigerLilea

Breaking the Vicious Cycle: Intestinal Health Through Diet

by Elaine Gloria Gottschall

The Specific Carbohydrate Diet™ (SCD™) is a grain-free, lactose-free, and sucrose-free diet that was originally designed for Celiac Disease. Today the SCD is also used for Irritable Bowel Syndrome, Candida, Crohn’s Disease, Ulcerative Colitis, Diverticulitis, Cystic Fibrosis, and Chronic Diarrhea. The SCD™ is proving helpful to many with Chronic Fatigue Syndrome and Fibromyalgia as well.

The SCD was designed by Dr. Sidney Haas for his young Celiac patients. Years later his son, Dr. Merrill Haas also joined him in his research and together in 1951 they published a book called Management of Celiac Disease.

Elaine Gottschall popularized the SCD after her daughter successfully used the diet in the late 1950s to recover from Ulcerative Colitis.

After receiving her Bachelor of Arts in biology and later a Masters of Science, Ms. Gottschall further studied and improved upon the Specific Carbohydrate Diet. She spent four years investigating the effects of various sugars on the digestive tract working mainly on the cellular level.

It is believed that intestinal microbes (bacteria and yeast) contribute to intestinal problems. These microbes need carbohydrates for their energy. The SCD uses carbohydrates known as monosaccharides (single sugars) that are easily digested in the first part of the small intestine, where they are well absorbed and therefore don’t remain in the digestive tract where they can feed the microbes.

The more popular elimination diets, particularly the Candida diets, believe that the ingestion of yeasts and fungi also contribute to the overgrowth of yeast and bacteria in the intestinal tract. However, the SCD concentrates on the elimination of the disaccharides (double sugars) and polysaccharides (starches). The disaccharides include lactose, sucrose, maltose, and isomaltose. The more complex carbohydrates do not completely breakdown in the small intestine and therefore arrive undigested in the further sections of the small intestine and the colon. There they are able to feed the bacteria and yeast. This can lead to malabsorption of nutrients because of injury to the surface of the intestine.

The suggested diet is an all natural diet, including meats, fish, canned fish packed in water or oil, poultry, some cheeses, dry-curd cottage cheese, home-made yogurt, eggs, nuts, fats, butter and oils, whole fruits, some juices, and non-starchy vegetables. Honey is also permitted as it is a single sugar. Yogurt must be home-made and left to sit for 24 hours to ensure it is lactose free. (Store bought yogurt has anywhere from 4.5 to 7 grams of lactose per cup.)

A partial list of foods to avoid are all grains, including rice, cereal and pasta; table sugar; molasses; corn syrup; maple syrup; milk and milk products except those listed above; processed meats; smoked meats; canned meats; canned vegetables; white potatoes; sweet potatoes; yams; corn; parsnips; and margarine.

After following this diet, most people will notice some improvement in as little as three to four weeks. By six months some people are able to decrease or stop taking their meds, and after approximately six months to two years most people can start adding back the forbidden foods one at a time without a return of their symptoms. (Instructions on which foods can be added back to the diet are given beside each food on Elaine Gottschall’s Legal / Illegal Foods Lists.)

Information on Elaine Gottschall’s Specific Carbohydrate Diet™ book, Breaking the Vicious Cycle: Intestinal Health Through Diet

How to Make Homemade Yogurt (as recommended for the Specific Carbohydrate Diet™)

Index of Web Sites Featuring the Specific Carbohydrate Diet™

Breaking the Vicious Cycle Web Site

SCD Web Library with SCD Recipes

Breaking the Vicious Cycle: Intestinal Health Through Diet
by Elaine Gloria Gottschall

Details on the Specific Carbohydrate Diet™ is a post from: Chronic Illness.org

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What is Multiple Chemical Sensitivity (MCS) and Environmental Illness (EI)?

Chronic-Illness.org — Mon, 17 May 2010 04:23:24 +0000

by Pamela Rice Hahn

What is Multiple Chemical Sensitivities (MCS)?

Whether you call it Multiple Chemical Sensitivities (MCS), Environmental Illness (EI), 20th century disease, Total Allergy Syndrome, Idiopathic Environmental Illness, or Chemical AIDS, or if you suffer chemical sensitivities along with the devastation of Gulf War Illness (GWI), Chronic Fatigue Syndrome (CFS), or Fibromyalgia (FMS), those who share my diagnoses are allergic or overly sensitive to many substances most of the world takes for granted.

The American College of Occupational and Environmental Medicine’s Position and Policies on Multiple Chemical Sensitivities: Idiopathic Environmental Intolerance states that the condition is referred to by more than 20 different names, which in itself is a challenge. Adding to the confusion is the fact that the “terms refer to complaints of patients who report recurrent non-specific symptoms referable to multiple organ systems that the sufferers believe are provoked by exposure to low-levels of chemical, biological, or physical agents” and that “no consistent physical findings or laboratory abnormalities have yet been found to differentiate MCS patients from the remainder of the population.”

According to the U.S. Department of Labor Occupational Safety and Health Administration, “Multiple Chemical Sensitivities (MCS) is a highly controversial issue” because not everyone accepts that adverse reactions to chemicals “is classifiable as an illness.”

Chemicals are everywhere! In her photo essay No Safe Haven, Rhonda Zwillinger reports that between 1940 and 1980, the production of synthetic organic chemicals increased from less than 10 billion pounds per year to more than 350 billion. (Those figures are much higher than that now; while the United States and most European countries have improved emission standards since that time, the additives used to comply with new environmental regulations often cause problems for those with chemical sensitivities, which makes any exhaust fumes that much more problematic. It’s impossible to do away with all such emissions or exhaust in modern society. Therein lies the problem….)

Chemicals are not always a bad thing. Chemicals have improved the quality of life for many because of the resulting increased food production and improved sanitary conditions. However, for a growing segment of the population — 2% with severe symptoms and as many as 20% with some sensitivity, chemicals in their various forms (preservatives, insecticides, perfumes, etc.) moderately to drastically decrease the quality of life.

Because of sensitivities to synthetic scents and/or preservatives, some perfumes often smell like insecticide to someone with Multiple Chemical Sensitivity. Perfumes and other chemical agents can trigger the auras that precede a migraine, cause laryngitis, or cause vomiting. Even something as commonly used as chlorine in tap water can cause skin irritation or swollen ankles following every shower, not to mention increased dizziness while in the shower. Forget about drinking the stuff! Contending with Multiple Chemical Sensitivity means that food that others take for granted might trigger a reaction (hives, boils, or a rash or digestive problems) because of a problem preservative, additive, nitrites and nitrates in meats, or artificial flavoring

In the meantime, please take the time to look over the informative links I’ve compiled for this page. Knowledge is power!

Multiple Chemical Sensitivities Personal Stories

The bullet points directly below are to individual articles:

No Safe Haven: People With Multiple Chemical Sensitivity Are Becoming the New Homeless
(E/The Environmental Magazine, September-October 1998)
Photographs and Interviews by Rhonda Zwillinger
Multiple Chemical Sensitivity
(American Family Physician, Editorial, September 1998)
ROY L. DEHART, M.D., M.P.H.
University of Oklahoma Health Sciences Center
Multiple Chemical Sensitivity Syndrome
MICHAEL K. MAGILL, M.D.ANTHONY SURUDA, M.D., M.P.H.
University of Utah School of Medicine, Salt Lake City, Utah
Article that accompanies above American Family Physician Editorial.
Adverse Effects of “Inactive” Ingredients
A chart that shows the possible side effects caused by food dyes
Health Effects of Air Pollution NO ROOM TO BREATHE:Air Pollution and Primary Care Medicine
Jefferson H Dickey, MD
Multiple Chemical Sensitivities (MCS): What It Is, What It Is Not, And How It Is Manifested.
Transcript of a speech given by neuropsychologist
SHEILA BASTIEN, Ph.D.
PSYCHOLOGICAL CORP., Berkley, CA
Everyday Exposure to Toxic Pollutants
Environmental regulations have improved the quality of outdoor air. But problems that persist indoors have received too little attention
by Wayne R. Ott and John W. Roberts
(Article, Scientific American, February 1998)

CHEMICAL INJURY INFORMATION NETWORK
The Chemical Injury Information Network (CIIN) is a tax-exempt, non-profit, charitable support and advocacy organization run by the chemically injured for the benefit of the chemically injured.

MCS Referrals & Resources

PHOENIX RISING: Living with Chemical Injury

ENVIRONMENTAL NEWS NETWORK

Material Safety Data Sheet (MSDS)
More than 1 MILLION Material Safety Data Sheets (350,000 from 1300 manufacturers; 700,000 from public access databases); links to MSDS software, service, training and product providers; links to Government MSDS information; and an MSDS knowledge base where you can ask questions.

American Academy of Environmental Medicine
Environmental Medicine is the comprehensive, proactive and preventive strategic approach to medical care dedicated to the evaluation, management, and prevention of the adverse consequences resulting from Environmentally Triggered Illnesses. The American Academy of Environmental Medicine is a group of clinicians from various specialties banded together in the 1965 and formed a medical society.

MCSurvivors
A wonderful resource site!!!

Jury Awards $10.6 million to Victim of Perfume Exposure

BetterBasics
Annie Berthold-Bond’s how-to site for less toxic living

REFERENCE
Links to the Merck Manual, Medical Dictionaries, and other useful information.

What is Multiple Chemical Sensitivity (MCS) and Environmental Illness (EI)? is a post from: Chronic Illness.org

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Environmental Illness Awareness and Support T Shirts and Gift Ideas

Chronic-Illness.org — Sat, 24 Apr 2010 02:47:00 +0000

This page is the index to Environmental Illness (EI) Awareness and Environmental Illness (EI) Support t shirt and gift idea designs in the Chronic-Illness.org T-Shirts and Gift Shop. Some are serious; others are humorous. For most designs, you can choose from a t-shirt, coffee mug. set of postcards, set of greeting cards or note cards, apron, coaster, framed tile, sweatshirt, and other gift gear.

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