Index to the Fibromyalgia is a Pain T-Shirt and Gift Idea design

Chronic-Illness.org invites you to read Julie Wendell’s Fibromyalgia story:

Living with Fibromyalgia

by Julie Wendell

“Mommy, open this, please?” my 3-year-old son asked as he handed me a cereal bar early one morning.

I tried to tear off the top of the wrapper, but my fingers would not move or grasp the wrapper!

Terrified, I tried opening it again, but to no avail.  I had lost all strength in both of my hands!   As calmly as I could, I asked my 7-year-old son to open the cereal bar for his brother.  But inside, I was panicking because the weakness in my hands persisted for about an hour.

What was happening to me?

Little did I know that the morning of February 10th, 2008 marked the beginning of a myriad of severely painful symptoms.  My life was about to drastically change.

Over the course of the next few weeks, I started to experience alarming new symptoms. In addition to the weakness in my hands, I noticed that the joints in my hands were very swollen and stiff. I even took pictures of my hands from all angles to make sure that their odd shape was not just my imagination. I would often feel sharp zinging pains in my extremities, especially in my hands, wrists, knees, and ankles. My muscles and joints ached like I had the flu. There were times when I would be convinced I had a temperature of at least 101, just to find out it was completely normal every time I checked.

My level of fatigue went from being a “full time single working mother” to feeling like a “full time single working mother who also ran 100 miles a day.” I was physically exhausted from dealing with so much pain every day.

To make matters worse, I started noticing that when I woke up each morning, I would not feel refreshed, even after a full straight 6-8 hours of sleep.  Instead, it felt like I only slept for one hour each night.  So not only was I physically exhausted, I was emotionally drained as well.  The overall level of exhaustion was indescribable, the worst I have ever experienced in my life!  But I was hoping that whatever was plaguing me would just stop on its own.

One afternoon in April 2008, after I got off work and picked up my kids, I couldn’t get home fast enough.  My body was overwhelmed with pain like I never felt before.  As soon as we walked through the door, I immediately headed for the couch, where I spent the next four days. I had to call my mom to help me take care of the kids.  In addition to my existing symptoms, I also suffered from oppressive chest pain, muscles/joints that felt bruised, extreme coldness in my arms and face, and TMJ-like jaw pain.   I also had the sensation that my aching spine and pelvis were going to slide out of my body.

I cried often, because I had no idea how to cope with these bizarre symptoms.

I tried heating packs, ice packs, Tylenol/Advil, but nothing even remotely helped me.

My temperature was still normal at 98.6.

My mom, who is a nurse, thought maybe I had a virus, but most of the symptoms did not even resemble any virus I had ever had in the past, plus I was not running a fever.  Even after the four worst days of feeling severely “sick,” most of my symptoms never fully disappeared.

At this point, I was at my wits’ end, so I finally decided to get some help.  So even though I was terrified of the possible outcomes, I made an appointment to see my primary care physician.

After reviewing my list of symptoms and seeing the pictures of my hands, he thought it was very likely that I had rheumatoid arthritis. He immediately referred me to a rheumatologist, who wanted to test me for not only rheumatoid arthritis, but also lupus, mononucleosis, and multiple sclerosis.

He ordered some x-rays of my hands and a lot of bloodwork.   He also prescribed a week’s worth of steroids to see if that would help.

My daily life started becoming a real chore for me.  Everything and anything I usually did without a problem was now unbearable or overwhelming.  The mornings and evenings were the worst times of day for my pain, fatigue, and weakness.  I tried to stay strong, especially for my children, but there were days where I felt like giving up on everything.

I tried talking to a few friends and family members about how I was feeling, but they would just say that I was complaining too much and/or accuse me of being a hypochondriac. I had never felt so alone in my life.

The results of the blood tests and x-rays came back the following week and were completely normal.  Also, the steroids ended up not helping me at all.  Based on these findings, the rheumotologist suggested that I may have fibromyalgia.  He prescribed an NSAID called mobic to help with my muscle/joint pain and an anti-convulsant/anti-neuropathy medication called gabapentin to help with my nerve pain.

The doctor said that diagnosing fibromyalgia was very tricky because there are no actual diagnostic tools. Instead, the diagnosis is made after everything else has been ruled out.  He also wanted to wait and see how the next few months went with the new medications before confirming the suspected diagnosis.

During the following months, both of the medications had made a difference to where my daily activities became more tolerable.  I still felt very fatigued, but my quality of sleep seemed to be more restorative (due to the gabapentin).  My muscle and joint pain were definitely persistent but they were on more manageable levels (due to the mobic).

When I went back to the doctor in August 2008, he reviewed all of my test results and evaluated me again, then officially diagnosed me with fibromyalgia, a syndrome characterized by chronic pain, stiffness, and tenderness of muscles, tendons, and joints (definition by MedicineNet.com).

The treatment for fibromyalgia includes pain medication and exercise.  The doctor advised me to continue with the medications I was currently taking and to try doing light exercise when possible.  He also warned me that my medication combination was not always going to be perfect.  He said it may take a few tries with various medications before reaching optimal pain management, and what works for me now may not work for me in a few years.

I was completely devastated, knowing that I was going to live with unrelenting complicated pain and severe fatigue for the rest of my life.

Sometimes, in addition to medication and exercise, doctors recommend a gluten-free diet to help alleviate fibromyalgia symptoms.  Coincidentally, I had already been on a gluten-free diet for 4 years already, due to having an auto-immune digestive disorder called Celiac Disease.  Unfortunately, being on this diet did not stop me from having fibromyalgia nor had it eased its symptoms.  My doctor said that I’m one of the unlucky fibromyalgia patients who was not positively affected by a gluten free diet.  Sometimes I like to think that being gluten free has stopped my fibromyalgia symptoms from becoming uncontrollable.

A diagnosis of fibromyalgia carries a negative stigma in society because the symptoms are very vague and are not so clear-cut as other diseases/conditions.  I have actually heard people say that there is no such thing as fibromyalgia, or that the symptoms are fake and they are all in the person’s head.

It is also widely believed that people who have fibromyalgia just want attention and/or medication.  There are many doctors do not recognize fibromyalgia as an actual medical condition.  Therefore, people who do have fibromyalgia usually have to see numerous doctors before receiving a diagnosis.  Luckily for me, reaching a diagnosis for my symptoms only took 6 months and involved seeing only 2 doctors.  Some people suffer for years before finding an answer.

Since my diagnosis, additional symptoms have added themselves onto the original list, such as hypersensitivity to stimuli.  For example, if there is too much light or sound, I start feeling very overwhelmed and need to remove myself from the situation.

There are times where I cannot be touched, when even my clothes feel like too much overload on my skin and receiving a hug actually HURTS.

I also started becoming sensitive to the weather patterns, especially low pressure systems.  I jokingly call myself the “human barometer” because I seem to predict rain better than the weatherman!  During periods of damp or cold weather, my muscles and joints heavily protest, and in turn, the pain increases substantially.

I found that I have a low tolerance for any kind of exercise, it makes me feel worse rather than making me feel energetic and refreshed.

I have also developed difficulty with my short term memory and concentration (ie-”fibro-fog”), which has affected all aspects of my life, especially work.

Today, it remains difficult for me to deal with the pain and fatigue that I experience every day with fibromyalgia.  My doctor has changed my pain reliever from mobic to tramadol, which is a bit stronger, so my pain is at a tolerable level most of the time.  But I definitely have my share of bad days.

On a positive note, I have learned a few things from my experience with fibromyalgia.

I’ve learned not push myself to do more than I can handle, but I’m still learning that it’s okay to ask for help.

I have also learned to prioritize what is actually important and to just take things one day at a time.

Having fibromyalgia has made me realize it is so important not to take anything for granted.

After my diagnosis, my rheumatologist had pointed out to me that fibromyalgia is not a deadly or destructive disease, which is very fortunate.  However, living with chronic pain and fatigue is still a difficult challenge, no matter what the cause.

Yes, fibromyalgia is REAL.

My Fibromyalgia Story: Living with Fibromyalgia by Julie Wendell is a post from: Chronic Illness.org

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View the design for the shirt Pammy is wearing and other slow going designs on this page.

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It’s better to be slow going than to be not going at all!

t-shirt and gift idea designs.

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Slow Going T-Shirt and Gift Idea Designs is a post from: Chronic Illness.org

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Index to Chronic Fatigue Syndrome, CFIDS, Myalgic Encephalomyelitis Sucks t shirt and gift idea design

Whether you refer to it as Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.), the name alone cannot convey the devastation brought about by having to cope with this condition. The “fatigue” in the name refers to much more than just being tired. Those who suffer from this condition experience a fatiguing condition similar to how one feels when you have the flu. Only with the flu, you eventually get better. Imagine dealing with those muscle aches, the weakness, headaches, and other symptoms on a daily basis and you know how someone with CFS feels on a good day.

For more information, see: What is Chronic Fatigue Syndrome?

Or refer to this information:

Chronic Fatigue Syndrome Personal Stories

United States Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME) Support Groups

Canadian Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME)  Support Groups

International Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME) Support Groups

More Information on Chronic Fatigue Syndrome Support Groups

Chronic Fatigue Syndrome Newsletters

Chronic Fatigue Syndrome Treatment

Chronic Fatigue Syndrome and the Placebo Effect

Dr. Gow Identifies Possible “Gene Signature” for ME/CFS/CFIDS

Exercise While Sitting Down (with pictures of the bounce back exercise chair)

CFS Gets Some of the Respect It Deserves!

CFS Book Available as a Free Download

Getting Congress Involved in CFS Advocacy

Charles W. Lapp, MD Provides a Response to the “Exercise May Help Those with CFS” Study

Chiari Syndrome and/or Cervical Spinal Stenosis

Information on surgery that purported to correct a problem that causes some forms of CFS

Casey’s Fund: The Casey Fero ME/CFS Tissue and Blood Bank

Hormones and Chronic Fatigue Syndrome / Fibromyalgia

Quotes on “How Did Your Chronic Fatigue Syndrome Start?”

Study Shows CFS Patients’ Brains May Be Shrinking

More articles available in the Articles Index

Or visit these Chronic Fatigue Syndrome resources:

The Chronic Fatigue Syndrome: Qualification for Disability Benefits

An article by Donald Schopflocher, Ph.D. (Psychology), M.E. / C.F.S. Society of Edmonton

When ‘feeling tired’ signals something more

An excellent Parade article by Dr. Isadore Rosenfeld that validates Chronic Fatigue Syndrome (CFS) as a serious medical condition, and discusses the number of people who suffer with this chronic disease.

Grassroots Action Center Listserv

The e-mail alert service, formerly known as C-ACT, now has a name that better reflects the purpose of this advocacy group: the Grassroots Action Center Listserv (GAC listserv) for CFS / CFIDS-related issues.

Center for Disease Control (CDC) Chronic Fatigue Syndrome Information

Chronic Fatigue Syndrome information at the United States government Center for Disease Control (CDC) Web site.

Chronic Fatigue Syndrome is not all in the mind

A 21 July 2005 New Scientist article regarding differences in gene expression have been found in the immune cells of people with chronic fatigue syndrome (cfs), a discovery that could lead to a blood test for the disorder and perhaps even to drugs for treating it.

Chronic Fatigue vs. Chronic Fatigue Syndrome

A National Institutes of Health (NIH) article about the differences between the extreme and persistent fatigue of Chronic Fatigue Syndrome versus that of a diagnosis of Chronic Fatigue.

The CFIDS Association of America Web site

The CFIDS Association of America, the leading CFIDS advocacy group in the United States, works with the CDC in providing CFIDS education for health care providers, publishes a magazine, and maintains a grassroots advocacy listserv. Chronic Fatigue and Immune Dysfunction Syndrome; Chronic Fatigue Syndrome (CFS); Myalgic Encephalomyelitis (M.E., ME)

The CFS Report

Working from the philosophy that the 1994 CDC revised case definition for CFS is unsound and far too complex because by including too many emerging fatiguing illnesses under an expansive “fatigue syndrome” label, “it has been very ineffective in producing consistent research,” The CFIDS Report offers an assortment of links for advocacy issues, CFS articles, and more.

CFIDS, M.E., AND Chronic Fatigue Syndrome Information Site

The CFIDS/M.E. Information Page is maintained by Mary Schweitzer, and includes links to resources and her personal essays about her experiences with the disease.

CFS/ME Information from CFS-NEWS

A general Chronic Fatigue Syndrome and Myalgic Encephalomyelitis resource site maintained by Roger Burns, the publisher of CFS-NEWS.

About CFIDS (Chronic fatigue and immune dysfunction syndrome)

Information on CFIDS (Chronic fatigue and immune dysfunction syndrome , also known as chronic fatigue syndrome, CFS, myalgic encephalomyelitis, ME and by many other names) provided by The CFIDS Association of America, Inc.

Chronic Neuroimmune Diseases

Melissa Kaplan maintains this site on Chronic Fatigue Syndrome, Lyme Disease, chemical sensitivity, pain, and other links and information.

A quote from Melissa’s previous site:

A growing number of researchers now believe that CFIDS is in fact non-paralytic polio. If you grew up during the polio epidemics, or ever received a polio vaccine, then you probably will want to check out the section below on Stealth Virus/Polio…

Due to the dysfunction of the neuroendocrine system, the body reacts to “mere” thinking just as it does to physical exertion … exercise in a healthy person causes increased blood oxygen levels in the brain and increased metabolism; these increases last for about six hours. When the CFIDS patient does it, however, they are already starting off with a lower-than-normal oxygen level in the brain, and exercise, instead of increasing it, actually makes it go lower. The body reacts to even mild exercise, like a short walk, as if it has run a marathon on top of working an 80-hour week: extreme pain, fatigue, cognitive dysfunction … and it lasts for 36-48 hours….

Chronic Fatigue Syndrome Hub

A site that provides general information about Chronic Fatigue Syndrome, including possible causes and treatments.

American Academy of Family Physicians – Chronic Fatigue Syndrome

The American Academy of Family Physicians page on Chronic Fatigue Syndrome Evaluation and Treatment.

American Journal of Medicine 1998 Supplement on CFS

Information on and links to the full text of the American Journal of Medicine September 1998 supplement on Chronic Fatigue Syndrome.

The Physical Basis of CFS

An article by Anthony L. Komaroff, MD of Harvard Medical School stating that although there is no known test or cause for Chronic Fatigue Syndrome (CFS), it is a mistake a mistake to assume that the illness is not real. The article cites evidence about the condition.

Dizziness, Imbalance, and Hearing Disorders

Dizziness and balance problems are often problems experienced by those with Chronic Fatigue Syndrome and Fibromyalgia. This page maintained by Northwestern University Medical School Professor and Chicago Dizziness and Balance’s Timothy C. Hain, MD has links to common causes for dizziness and balance problems, plus information on hearing disorders.

From Skepticism to Science: CFS May Be Getting Some Respect

An article by the author (Dorothy Wall) of the book Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome about how, after 20 years, chronic fatigue syndrome may finally be getting some respect and cutting-edge science.

Chronic Fatigue Syndrome is More Than Just Being Tired

An article detailing what the symptoms and problems with which those who suffer from Chronic Fatigue Syndrome must cope.

Chronic Fatigue Syndrome

A well-documented article by Dr. Peter Grant, written for Clinical/MedAu.

Chronic Fatigue Syndrome and its Connection to ADD/ADHD

An article written by Michael J. Goldberg, MD, whose wife suffers from Chronic Fatigue Syndrome.

Canadian CFS Diagnostic Code

Because of the efforts of The Myalgic Encephalomyelitis Association of Ontario, Dr. Alison Bested, and others, Chronic Fatigue Syndrome (CFS) now has an official diagnostic code (OHIP Diagnostic Code 795) by the Ontario Medical Association as a Neurological Illness. According to information on the The National ME/FM Action Network, the association had hoped to get “Myalgic Encephalomyelitis (ME)” included in the diagnostic code definition, but they’re celebrating the success all the same.

Updated Canadian Case Definition for M.E./Chronic Fatigue Syndrome

The Myalgic Encephalomyelitis (M.E.) Society of America’s report on the 2003 Canadian update to the case definition for Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS).

Listening to CFIDS

Sue Boettcher edits this excellent (and well-designed) online magazine-style site which includes essays and writings by PWC (People With CFIDS) and a message board.

Peter C. Rowe, MD Revised Guidelines for CFS and POTS

Revised guidelines for CFS and POTS from Peter C. Rowe, MD, Professor of Pediatrics, Johns Hopkins.

Timothy C. Hain, MD on Orthostatic Intolerance in CFS, POTS

An article by Timothy C. Hain, MD, Northwestern University Medical School, Chicago in which he states that something as simple as elevating the bed 4-6″ can increase a POTS patient’s blood volume, and can be helpful after only a few days. Treatment options, medical tests, and association with Chronic Fatigue Syndrome (especially in juvenile patients) discussed.

eMedicine Health: Chronic Fatigue Syndrome Overview

eMedicine Consumer Health Web site’s overview of Chronic Fatigue Syndrome (CFS).

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.

Youth and Pediatrics/CFS

A general youth and pediatrics Chronic Fatigue Syndrome resource site maintained by Roger Burns, the publisher of CFS-NEWS.

Other pages of interest:

Exercise While Sitting Down (with the help of the
Bounce Back Chair)

Because the bounce back exercise chair increases the flow of lymphatic fluids throughout the body by as much as 10 times their normal rate, it helps the body remove toxins, strengthens the immune system, increases muscular strength, and improves blood circulation. Also sometimes referred to as the Bounce Back Fitness Chair, Bounce Back Exercise Chair, and Bounce-Back Chair.

NZine

New Zealand online magazine site billed as: People Making Changes — Self Help For Sufferers From M.E. (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome)

Chronic Illness Realities Comic Strip

Chronic Fatigue Syndrome Resources is a post from: Chronic Illness.org

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(Revised)

Many who cope with Chronic Fatigue Syndrome, Fibromyalgia, and other chronic illnesses must also deal with sleep disturbances. Getting enough rest is essential to good health and well-being, so many must rely on sleep medications.

Treating Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: “A Prescription For Sleep”

An article on drugs have shown promise in assisting sleep for patients with CFS/CFIDS/ME.

Mayo Clinic “Chronic Fatigue Syndrome: Treatment and Drugs” page

This article cites that “[t]here’s no specific chronic fatigue syndrome treatment,” but does include a discussion of some of the treatments. (They cite that “[r]esearch has proved that gradually increasing exercise can improve the symptoms of chronic fatigue syndrome,” but fail to mention that for those with exercise-intolerant Chronic Fatigue Syndrome, the opposite has been proven to be the case: For those with exercise-intolerant Chronic Fatigue Syndrome, exercise exacerbates the symptoms. For more information, refer to Dr. David S. Bell.) The page does cite some sleep assistance protocols and experimental therapies.

CDC – Toolkit: Sleep – Chronic Fatigue Syndrome (CFS)

This Centers for Disease Control and Prevention (CDC) page concentrates more on “good sleeping habits,” or what they refer to as “sleep hygiene,” than on sleep medications. (Keep in mind that historically [hysterically?] the CDC has chosen to consider CFS a psychosomatic condition rather than a physical illness. According to this page, that’s reflected in the NIH annual per-patient research funding: AIDS/$2700; Asthma/$300; CFS/$4.)

Lifestyle changes and the right medications can help ease fatigue and restless sleep from fibromyalgia.

A WebMD article. (Note that while many patients with Fibromyalgia also have Chronic Fatigue Syndrome, there is a difference between “chronic fatigue” and “Chronic Fatigue Syndrome.”)

Medication Use by Persons with Chronic Fatigue Syndrome: Results of a Randomized Telephone Survey in Wichita, Kansas

Results of a 2003 survey.

Sleep Medications for Chronic Fatigue Syndrome and Fibromyalgia is a post from: Chronic Illness.org

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(Revised) There are lots of diet plans to choose from. Each has its own claims to fame — or at least its promise of a more healthful eating lifestyle. Part of the problems with those diagnosed with syndromes and conditions like Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) is that not everybody experiences exactly the same symptoms. For example, some with Fibromyalgia have Irritable Bowel Syndrome (IBS); others do not. Therefore, the same as not every treatment plan works for everyone diagnosed with CFS or FM, there isn’t a “one size fits all” eating regimen either. Many find they must match their diet with their (for lack of a better word) form of their disease, syndrome, or condition.

Details on the Specific Carbohydrate Diet™
by Bernie Standish

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. [Read more....]

The Anti-Inflammation Diet

Citing Jack Challem, author of The Inflammation Syndrome, this article by Catherine Guthrie explains the dietary steps to stamp out inflammation leading to high c-reactive protein (CRP) levels associated with the elevated risk of heart disease, arthyritis, fibromyalgia, and other disorders.

May the (Organic) Source Be With You

Most experts agree that organic and all natural foods free of chemical additives and preservatives are the healthiest food choices.

Diabetes and Diabetic Diets:

CookingWithPam.com Diabetic Cooking Section

Chronic-Illness.org Diabetes Section

The Everything Writing Well Cookbook recipe index

Special Diet Web Sites:

Enabled Cooking

Coping Skills: Special Diets is a post from: Chronic Illness.org

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When confronted with a Chronic Fatigue Syndrome, CFIDS, or Myalgic Encephalomyelitis (M.E.) diagnosis, it helps to keep abreast of the latest treatments and information. This is especially important because your family and friends may be having difficulty understanding the changes in you — especially when you don’t understand those changes yourself.

These sites have Chronic Fatigue Syndrome support newsletters:

CFIDS.org

CFIDS.org newsletter archives

The Lyndonville News

Bi-monthly newsletter from Dr. David S. Bell.

The Lyndonville News Archives

The Doctor’s Guide to Chronic Fatigue Syndrome:
Understanding, Treating, and Living With CFIDS

by David S. Bell, M.D.

Chronic Fatigue Syndrome Newsletters is a post from: Chronic Illness.org

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(Revised)

Chronic Fatigue Syndrome, which is sometimes also referred to as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (M.E. or ME), is an illness characterized by prolonged, devastating fatigue. Chronic Fatigue Syndrome is often also characterized by overlapping allergies, sensitivities, and symptoms from other conditions. The same factors that can make diagnosis difficult also affect how these symptoms are treated. These resources provide information about the tests and treatment protocols available for Chronic Fatigue Syndrome:

Chronic Fatigue Syndrome and the Placebo Effect

Prozac – A Problem Drug or a Scapegoat?

New Study Shows Promise that “Skin Tests” May Be Able to Provide a Definitive Diagnosis for Chronic Fatigue Syndrome

The Grand Challenge for Research

Learn how despite hundreds of millions being spent on AIDS research and more than $100 million on MS research, despite that in 2004 only $3.9 million for Chronic Fatigue Syndrome research, the NIH is imposing further CFS research funding cuts which has put researchers in a difficult position….

CDC Chronic Fatigue Treatment Information

Data from the U.S. government Center for Disease Control about non-pharmacologic therapy (physical activity, education,…) and pharmacologic therapy (prescription medication, experimental drugs and treatment,…) and dietary supplements and herbal preparations.

The Marshall Protocol for Treating Chronic Fatigue Syndrome

In this interview, Trevor Marshall, Ph.D. explains why he believes his (controversial) protocol developed to relieve the symptoms of Sarcoidosis patients also works for those with Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Lyme Disease, and other illnesses and conditions.

Additional reading on the Marshall Protocol:
The Marshall Protocol, STAY AWAY FROM THIS ONE
Marshall Protocol Study Site

Steroid Medication No Help to CFS Patients Who Get that Faint Feeling

A January 2001 National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health (NIH) press release on a study to determine whether steroid medication would provide relief for Chronic Fatigue Syndrome patients who experience light-headedness when standing for long periods of time.

Treatment at the Cheney Clinic

A reprint of an article that first appeared in the July/August 1998 issue of “The CFIDS Chronicle” (Vol. 11 No. 4) that details how Chronic Fatigue Syndrome expert Dr. Paul Cheney, M.D., Ph.D. treats his patients, including exercise recommendations such as the Bounce Back chair.

Dr. Paul Cheney on the Clinical Management of Chronic Fatigue Syndrome

Audio Tape Transcriptions of Paul Cheney, M.D. on the Clinical Management of Chronic Fatigue Syndrome, from a workshop held in February of 1999.

Dr. Paul Cheney Treatment Information Radio Interview

C-Cure.org page of a radio interview with Chronic Fatigue Syndrome expert Dr. Paul Cheney about his experience and treatment information associated.

Dr. Paul R. Cheney’s Basic Protocol: 2003 Supplement/Health Aid

A page showing Chronic Fatigue Syndrome expert Dr. Paul Cheney’s 2003 basic protocol for treatment and supplement/health aid recommendations.

Dr. Cheney’s Basic Treatment Plan 2002

Information on Chronic Fatigue Syndrome expert Dr. Paul Cheney’s 2002 Basic Treatment Plan. Includes recommendations for rebound exercise, such as that possible with the Bounce Back Chair; prescription drug and supplements recommendations; and basic diet suggestions.

Cerebral & Systemic Hemodynamics Changes During Upright Tilt in CFS

Abstract and link to full text of a Journal of Neuroimaging article on “Cerebral and Systemic Hemodynamics Changes During Upright Tilt in CFS.” During the “tilt table test,” patients with chronic fatigue syndrome (CFS) have higher rates of neurally mediated hypotension (NMH) and postural tachycardia syndrome (POTS) than healthy controls.

Paul Cheney, M.D.’s Oxygen Treatment for Chronic Fatigue Syndrome

An explanation of Chronic Fatigue Syndrome expert Dr. Paul Cheney’s method of prescribing oxygen for patients with alkaline venus blood.

Dr. Paul Cheney Discusses the Benefits of Klonopin

An interview with Chronic Fatigue Syndrome expert Dr. Paul Cheney about what he believes are the benefits of treatment with Klonopin and the supplement magnesium because of their neuroprotective qualities.

An Interview With Paul Cheney M.D., Ph.D.

A transcript of the February 28th, 1999 CFS Radio Program Host Roger G. Mazlen, M.D. interview with Dr. Paul Cheney.

Chronic Fatigue Syndrome Clinical Trials

A search index of Chronic Fatigue Syndrome (and other) Clinical Trials.

Compare the Medical Conditions of Gulf War Veterans to CFS, Other….

Information on a completed Department of Veterans Affairs clinical trial comparing the medical conditions of Gulf War veterans to non-deployed veterans. Comparisons were made between Gulf War Syndrome (GWS) and Chronic Fatigue Syndrome, Fibromyalgia, other conditions, and general health status.

Orthostatic Intolerance in Adolescent Chronic Fatigue Syndrome

The abstract of a New York Medical College study on “Orthostatic Intolerance in Adolescent Chronic Fatigue Syndrome” with links to the full text of the article and to other articles that cite this study.

CFS and the Exercise Conundrum

Lucinda Bateman, MD
A (pdf) article about how one CFS patient was able to restore her muscular strength. Citing the exercise intolerance associated with CFS, the article states:

One thing patients and medical providers agree on is that CFS is characterized by post exertional malaise, a term that often understates a “payback” that varies from escalation of widespread pain, to exhaustion requiring a recovery day in bed, to serious relapse of the entire CFS symptom complex:the
cognitive dysfunction, flu-like achiness, fatigue, low grade fevers, lymph node tenderness and disturbed sleep patterns of weeks or months duration. Post-exertional malaise has always been considered a defining feature of CFS, although we are still uncertain why it occurs (Fukuda).

Holistic Chronic Fatigue Syndrome Center

The Fibromyalgia and Fatigue Center is the Web site for the Fibromyalgia & Fatigue Centers (FFC) founded by Chronic Fatigue Syndrome and Fibromyalgia patient Dr. Kent Holtorf. These centers use a holistic approach to treatment for these conditions.

Chronic Fatigue Tests, Treatments, and Research is a post from: Chronic Illness.org

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In addition, this is some of the revised information online about Chiari syndrome and/or cervical spinal stenosis:

Chiari Malformation

From the National Institutes of Health: National Institute of Neurological Disorders and Stroke, general information about research, treatment, and prognosis.

Chiari Malformation

The Columbia University Medical Center Chiari malformation pediatric neurosurgery site.

Chiari Malformation in CFIDS/FM on Co-Cure

The May 1999 article from the CFIDS Chronicle on a possible connection between Chiari and CFS/FM. (Note: This article has a large number of  the links to the other sites mentioned in Lisa Lorden’s 2000 article about this condition; however, most of those links no longer work.)

CONTROVERSY: Spinal Surgery for Fibromyalgia Patients

A National Fibromyalgia Research Association report on  the January 25, 2003 the North Carolina Medical Board’s decision to indefinitely suspend Dr. Michael Rosner’s medical license. (According to information on this page, Dr. Rosner is a neurosurgeon who had been exploited by the media as doing surgeries to “cure” fibromyalgia and CFIDS, when in fact he has never performed a surgery as a treatment for FM/CFIDS.)

Chiari syndrome and/or cervical spinal stenosis is a post from: Chronic Illness.org

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Personal Stories & Reports (revised)

T-Shirt and Gift Merchandise

Chronic Fatigue Syndrome

Environmental Illness

Fibromyalgia

Multiple Chemical Sensitivities

Nap Realities Designs

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

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

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