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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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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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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Articles & Resources on Postural Tachycardia Syndrome (POTS)

National Dysautonomia Research Foundation

Dysautonomia is a dysfunction of the autonomic nervous system, and includes Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope, Mitral Valve Prolapse Dysautonomia, and other disorders. The National Dysautonomia Research Foundation (NDRF) provides physician, treatment, a research database, a patient handbook, videos, and other materials.

Vanderbilt University Medical Center Orthostatic Intolerance Page

Vanderbilt University Medical Center information on Orthostatic Intolerance and Postural Tachycardia Syndrome (POTS).

CFIDS Association of America Article on Orthostatic Intolerance

The printable version of an article on the The CFIDS Association of America. Inc. site on Orthostatic Intolerance. Includes information on treatment options.

Autonomic Nervous System Dysfunction in Adolescents with POTS & CFS

The complete text of an article by Julian M. Stewart, M.D., Ph.D on “Autonomic Nervous System Dysfunction in Adolescents with Postural Orthostatic Tachycardia Syndrome and Chronic Fatigue Syndrome Is Characterized by Attenuated Vagal Baroreflex and Potentiated Sympathetic Vasomotion.”

POTS Clinical Trials – National Institutes of Health Information Page

Information page maintained by the National Institutes of Health on POTS Clinical Trials.

NDRF Listing of Physicians and Facilities that Treat POTS

A listing of physicians and medical facilities that have notified the National Dysautonomia Research Foundation of their knowledge and specialty in the diagnosis and medical treatment of Dysautonomia and Postural Tachycardia Syndrome (POTS).

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 and medical tests discussed.

NINDS Postural Tachycardia Syndrome Information Page

The National Institute of Neurological Disorders and Stroke site’s information about Postural Tachycardia Syndrome (POTS)

New York Medical College Center For Hypotension POTS Page

The New York Medical College Center For Hypotension page on Postural Tachycardia Syndrome (POTS) information, maintained by Julian M. Stewart M.D., Ph.D.

Abnormal impedance cardiography predicts symptom severity in CFS

The abstract and link to the full text about a study done by the Myalgic Encephalomyelitis Society of America on circulation problems in those with Chronic Fatigue Syndrome.

The Neuropathic Postural Tachycardia Syndrome

Abstract of a study done by Giris Jacob, M.D., D.Sc., Fernando Costa, M.D., John R. Shannon, M.D., Rose Marie Robertson, M.D., Mark Wathen, M.D., Michael Stein, M.D., Italo Biaggioni, M.D., Andy Ertl, Ph.D., Bonnie Black, R.N., and David Robertson, M.D. on postural tachycardia syndrome, with links to additonal information from Vanderbilt University and other sources.

POTS Place: A Guide to Postural Tachycardia Syndrome

POTS Place: A Guide to Postural Tachycardia Syndrome is a site maintained by The Dysautonomia Information Network.

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.

Local Vascular Responses Affecting Blood Flow in POTS

Abstract and link to full text of a New York Medical College study on Local Vascular Responses Affecting Blood Flow in Postural Tachycardia Syndrome.

Regional blood volume and peripheral blood flow in POTS

Abstract and link the text of the entire article on a study by New York Medical College on “Regional blood volume and peripheral blood flow in postural tachycardia syndrome.”

POTS Articles in HighBeam Research Archives

Below the Google ads is Information on POTS articles from the HighBeam™ Research newspaper and magazine archive, which contains articles from hundreds of publications, including: Modern Medicine, Aging, The Ardell Wellness Report, HealthFacts, Medical Post, Medical Update, Men’s Health and the National Women’s Health Report.

MEDLINE/PubMed Database of POTS Research Articles

MEDLINE/PubMed Database of indexed full text articles from Life Sciences Journals on Postural Tachycardia Syndrome (POTS).

What Helps? … from POTS Place

POTS Place information on treatments, medications, and lifestyle adaptations that help those with POTS.

Edema and Venous Pooling

Information on different conditions (including POTS) that can cause fluid and plasma to collect within a limb instead of processing through the cardiovascular system, which is referred to as edema.

Neuropathic Postural Tachycardia Syndrome – NEJM

The abstract and full text links to The New England Journal of Medicine study on Neuropathic Postural Tachycardia Syndrome — “a common disorder that is characterized by chronic orthostatic symptoms and a dramatic increase in heart rate on standing, but that does not involve orthostatic hypotension.”

Cerebral & Systemic Hemodynamics Changes During Upright Tilt in CFS

Full text of a Journal of Neuroimaging article on Cerebral and Systemic Hemodynamics Changes During Upright Tilt in CFS.

Autoantibodies to Ganglionic Acetylcholine Receptors in Autoimmune….

Abstract of a study on Autoantibodies to Ganglionic Acetylcholine Receptors in Autoimmune Autonomic Neuropathies which is cited in a number of other related linked articles and studies.

American Academy of Family Physicians on Orthostatic Hypotension

While POTS is associated with an increase in the heart rate when the patient stands, orthostatic hypotension is a condition that causes a decrease in the heart rate when standing. This page is the American Academy of Family Physicians article on Evaluation and Treatment of Orthostatic Hypotension.

The Doctor’s Lounge Information on Postural Tachycardia Syndrome

The Doctor’s Lounge information on Postural Tachycardia Syndrome (POTS).

National Heart, Lung, and Blood Institute

Postural Tachycardia Syndrome (POTS) is a post from: Chronic Illness.org

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Whether you refer to it as Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune and 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?

One of the most difficult things to deal with when confronted with a Chronic Fatigue Syndrome, Fibromyalgia, or Myalgic Encephalomyelitis (M.E.) diagnosis is finding the support you need. This is especially difficult because your family and friends may be having difficulty understanding the changes in you — especially when you don’t understand those changes yourself.

Articles & Resources

Instructions on How to Form a Support Group

eHow: How to Form a Support Group

Easy Instructions on How to Start a Support Group

Index for the above T-Shirt and Gift Idea Design

Fibromyalgia, Chronic Fatigue Syndrome, and Myalgic Encephalomyelitis Support Groups

There are support groups throughout the U.S. and the world who help those who suffer from Chronic Fatigue Syndrome and/or Fibromyalgia learn ways to cope with those devastating conditions. The sites mentioned here provide contact information for those groups.

Chronic Fatigue Support Groups in the United States

This page provides links to Chronic Fatigue Syndrome support groups in the United States.

Chronic Fatigue Support Groups Outside the United States

Links to international Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME)  support groups (i.e., support groups outside of the United States).

For Parents of Sick and Worn-Out Children

Web site maintained by Frank Albrecht, Ph.D. on bluecrab.org that offers support and resources for parents whose child or children have Chronic Fatigue Syndrome.

Google Directory of Chronic Fatigue Support Groups

The Google Directory to Chronic Fatigue Support Groups currently lists more than 500 online and local listings.

Google Directory of Fibromyalgia Support Groups

The Google Directory to Fibromyalgia Support Groups currently lists more than 200 online and local listings.

Canadian Support Groups:

(Those who live in Canada can find help — or directions on where to find help — here.)

More Information on Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME) Support Groups is a post from: Chronic Illness.org

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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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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

Revision Copyright © 2010 Blue Rose Bouquet Group, LLC
All Rights Reserved

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

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What causes CFS?

The exact cause of CFS is unknown. A distinct or direct cause has not been positively identified.

Some studies have shown that Chronic Fatigue Syndrome may be caused by inflamed nervous system pathways, Mycoplasma bacterial infection, or viral illness (such as Epstein-Barr) complicated by an inadequate or dysfunctional immune response. For some, the condition can occur following an injury, infection preceding or following surgery (e.g., peritonitis), or other traumatic body events that weakens or adversely affects the immune system. Age, environment, genetic disposition, prior illness, or stress may also be factors. Like most autoimmune illnesses, CFS most commonly occurs in women, usually ages 30 to 50.

Symptoms of CFS

What are the symptoms of CFS?

Many of the symptoms of CFS are similar to those associated with the flu (muscle aches, headache, and fatigue).

However, unlike the flu, while with CFS these symptoms may ebb and flow, they never go away.

(Imagine dealing with flu symptoms on a daily basis and you know how someone with CFS feels on a good day.)

What are the primary symptoms of CFS?

Primary symptoms include:

• New onset fatigue or tiredness that lasts for at least 6 months and is not relieved by normal rest
• Full-body fatigue serious enough to restrict normal activity that develops from far less exertion than was possible before the illness

What other symptoms are sometimes present?

Additional symptoms include:

• Constant headaches, different those previous in pattern, quality, or severity
• Feeling unrefreshed after normally adequate sleep
• Forgetfulness, cognitive impairment including confusion or difficulty concentrating, or irritability
• Joint pain, often moving from joint to joint (migratory arthralgias), without joint swelling or redness
• Low-grade fever (101F or less)
• Lymph node tenderness and swelling in the neck or armpit
• Muscle aches (myalgias)
• Exercise intolerance: Muscle fatigue that lasts more than 24 hours after an amount of exercise that would normally be easily tolerated

• Muscle weakness, all over or multiple locations, not explained by any known disorder

• Sore throat, red but without drainage or pus

What is the difference between CFS and “chronic fatigue”?

Chronic Fatigue Syndrome (ICD10-CM or WHO ICD-10 G93.3) has a different medical diagnostic code than idiopathic Chronic Fatigue (WHO F48.O).

There are different symptom requirements used to diagnose these different entities.

Chronic Fatigue Syndrome and chronic fatigue are sometimes incorrectly used as synonymous, when in actuality they are two entirely different diagnoses. Chronic fatigue is often a symptom of other conditions, such as Chronic Fatigue Syndrome, depression, and so forth.

Patients can sometimes get relief from the chronic fatigue that accompanies other conditions. As the condition causing the chronic fatigue improves, the chronic fatigue lessens.

At present, there is no cure for (or complete relief from) Chronic Fatigue Syndrome.

CFS Tests

Everybody gets tired! How is the fatigue of CFS different?

The fatigue of CFS is all-encompassing. It involves not only the feeling of having gone without rest (even after getting a full night’s sleep, for those that fortunate; disrupted or irregular sleep patterns is often another side effect of CFS), the fatigue includes muscle weakness, cognitive impairment, and ongoing headaches of varying degrees.

Tests have shown that many CFS victims already start off with a lower-than-normal oxygen level in the brain, and exercise, instead of increasing it, actually makes it go lower. In addition, studies such as those noted in a 2004 article Muscle Metabolism with blood flow restriction in Chronic Fatigue Syndrome in the Journal of Applied Physiology have shown that blood flow to the muscles is also altered.

Melissa Kaplan describes this by saying that “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.”

What are some of the tests for CFS?

Physical examination is usually conducted to confirm the fever, lymph node tenderness, lymph node swelling, or other symptoms, but often examination alone is not considered conclusive.

A health care provider can deduce a diagnosis of CFS only after ruling out all other known possible causes of fatigue, such as:

• Drug dependence
• Endocrine diseases (such as hypothyroidism)
• Infections
• Muscle or nerve diseases (such as multiple sclerosis)
• Other illnesses (such as heart, kidney, liver diseases)
• Other immune or autoimmune disorders
• Psychiatric or psychological illnesses, particularly depression (because the severe fatigue of CFS itself may bring about depression, a diagnosis of depression does not rule out CFS; however, fatigue related to depression alone must be ruled out in order for CFS to be diagnosed)
• Tumors

What symptoms must be present for a CFS diagnosis?

A diagnosis of CFS must include:

• Absence of other causes of chronic fatigue (excluding depression when other symptoms are present)
• At least 4 of the other symptoms listed
• Extreme, prolonged fatigue

There are no specific tests to confirm the diagnosis of CFS; however, a variety of tests are usually conducted in order to exclude other possible causes of the symptoms.

Note: In order to rule out muscle or nerve diseases and/or psychiatric or psychological illnesses, a complete neuro-psych exam may be a part of the diagnosis process.

Some typical findings on tests that, while not specific enough to diagnose CFS, are seen consistently in people who are eventually diagnosed with the disorder. These include:

• Brain MRI that shows evidence of swelling in the brain or destruction of some of the nerve cells (demyelination)
• Higher levels of specific CD4 T white blood cells compared to other types of white blood cells (e.g., CD8 T cells)
• Specific white blood cells (lymphocytes) containing active forms of EBV or HHV-6

What treatment is available for CFS?

At present, no treatment has been proven to be effective as a way to cure CFS. Rather than hope for a cure, the symptoms are treated instead. Many people with CFS experience depression and other psychological problems that may improve with treatment.

Some of the proposed treatments include:

• Antianxiety drugs to treat anxiety
• Antidepressant drugs to treat depression
• Antiviral drugs, such as acyclovir
• Drugs to fight “hidden” yeast infections, such as nystatin
• Medications to reduce pain, discomfort, and fever

Unfortunately, for many with CFS, medications can cause adverse reactions or side effects that are worse than the original symptoms of Chronic Fatigue Syndrome.

While patients with CFS are encouraged to maintain active social lives, and mild physical exercise may also be helpful, for many this isn’t possible.

What long-term effects should somebody with CFS expect? (In other words: What is the prognosis?)

The long-term outlook for patients with CFS is difficult to predict at the initial onset. Some patients have been reported to completely recover after six months to a year. Others may take longer for a complete recovery. Some never recover or return to pre-illness energy and wellness levels.

What are the complications of CFS?

CFS causes what might be considered lifestyle restrictions. For people for whom the fatigue is so severe or unpredictable that they are essentially disabled and homebound during much of the course of the illness, this leads to social isolation and an inability to maintain steady employment.

What should I do if I suspect I have CFS?

Call for an appointment with your health care provider if you experience persistent, severe fatigue, with or without other symptoms of CFS. Remember: There are other serious disorders that can cause similar symptoms; those need to be excluded.

Note:

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.

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.

Pictures of the Bounce Back Exercise Chair

Chronic Fatigue Syndrome Resources

View the Chronic Illness Serenity Prayer (multi)
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What is Chronic Fatigue Syndrome is a post from: Chronic Illness.org

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