Fibromyalgia Resource

"Chronic Shakiness Syndrome"

ProHealth has received 438 letters to date regarding Campaign for a Fair Name - the three-week-old patient movement to change the name "Chronic Fatigue Syndrome" to one that does not trivialize the seriousness of the disease by calling it a symptom common to many diseases and life conditions.

The vast majority of writers offered support by volunteering their time and energy for the campaign. Less than 2 percent of the letters were from readers who felt that the name should remain the same, their rationale being that CFS is already a recognized name. The Centers for Disease Control (CDC) maintains that less than 20 percent of CFS victims have actually received a CFS diagnosis. This means it is not recognized enough. The theme of most of the letters is that the name is hurtful and stigmatizing to patients and their loved ones; a real, serious disease deserves a real, serious name. Not one with "fatigue" as the central part.

Some people wrote that the name should be changed only after the cause of the disease is identified. Although this is an ideal scenario, there are probably several "subgroups" of CFS, and most likely there are several causes as well. Waiting for the discovery of a cause could take a long time, and even then, it may be the cause of only one of the disease's subgroups. I used to be in the "wait for the cause" camp, but almost 20 years have passed and the name "Chronic Fatigue Syndrome" continues to harm sufferers, confuse doctors, and impede research funding.

My favorite letter was from someone who said that calling this disease Chronic Fatigue Syndrome is like calling Parkinson's disease "Chronic Shakiness Syndrome" or calling Alzheimer's disease, "Chronic Forgetfulness Syndrome." My hat is off to that person. Bravo!

The name suggestions have been creative and impressive, and ProHealth has established a place on our bulletin board where you can introduce your name choice, discuss others that have been suggested, or just read the comments of other visitors. One name seems to be getting most of the attention, and looks like it could be an early winner. Want to know which one? Visit the bulletin board.

About the bulletin board: You will need to register, but there is no charge and no spam, and you will always have complete anonymity. While you are there, search the archives for specific information pertaining to you and your needs. Our bulletin board is a fabulous source of expert information from people who know and who care - just like you.

What would you like "Chronic FATIGUE Syndrome" to be called?

Yours in health and unity,

Rich Carson
ProHealth Founder and CFS Patient

PS. To the many wonderful people who wrote to volunteer your efforts: Thanks a million for your support! I will be in touch with you as we begin to launch the campaign. Stay tuned.

A small sampling of the hundreds of letters we've received from you via CFSnamechange@prohealth.com, including suggested names, campaign ideas, and offers of support.   more

Azithromycin Improved Symptoms in 59 percent of CFS Patients

Of 99 CFS patients treated with the antibiotic azithromycin for six weeks, 58 achieved improvements in symptom severity, possibly owing to a "modulating" effect on the immune system in a subset of patients.   more

Dr. Paul Cheney's Continuing CFS Heart Dysfunction Research

The hearts of some CFS patients don't fill properly with blood, reports Paul Cheney, MD, an internationally recognized CFS researcher and innovator. He believes this condition is associated with a lack of energy "at the cellular level," and is refining a "cellular energy therapy" that may address the problem.   more

Relief of Major Depression in Less Than Two Hours with Experimental Medication

A single very low intravenous dose of a medication historically employed for anesthesia - and experimentally for chronic pain - can provide significant relief or remission of treatment-resistant major depression in less than two hours, an NIMH study reports.*   more

New Mechanism for Chronic Pain Relief Identified

Researchers at the University of Edinburgh have identified a way to produce a dramatic natural painkilling effect using small doses of certain "cooling chemicals," either injected or applied to the skin.*   more

Betaine Hydrochloride Supplementation Beneficial for Many CFS Patients

CFS specialists report that their patients often lack the amounts of stomach acid needed to digest nutrients properly and fend off bacteria in the digestive tract. Yet recognition and correction of this deficiency is often stymied because the symptoms of too little digestive acid may mimic those of too much acid.   more

Abstracts of Recent CFS-Related Journal Articles

One of these indicates viral infections may reduce CFS patients' ability to biosynthesize omega 3 and omega 6 long chain polyunsaturated fatty acids, indicating that supplementation with these essential "PUFA" nutrients may be beneficial for some CFS symptoms.   more

Maine Man Wins Record Award in Disability Bias Suit

In a Maine federal district court, Fibromyalgia patient Ronald Harding won what "could be the largest employment discrimination case in the state's history."   more

The Solace of Beauty

As I've become stronger, the importance and solace of beauty never lessen. The colors of leaves - yellows, cinnabar, auburn, like teas - hold my attention every day. "Every now and then, in my waking moments, and especially when I am in the country, I stand and look hard at everything," writes William Maxwell in his essay "Nearing Ninety." Illness, like age, or a death, invokes loss and a desire to absorb intensely what one still has. I too want to stop and stare for long moments, to keep these colors with me.

From Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome, by CFS patient Dorothy Wall

In my garden, after a rainfall, you can faintly, yes, hear the breaking of new blooms.
- Truman Capote

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Clarification

In our August 23 CFS newsletter, we ran an article summarizing "Dr. Kenny De Meirleir's Breakthrough Research and Recommendations for CFS Testing & Treatment," which applies in part to Fibromyalgia patient testing as well. more

The point we wish to clarify is that Dr. De Meirleir has no financial relationship with/interest in REDLABS USA, a testing-services lab which he co-founded with Vincent Lombardi, and which an American company subsequently took over for "zero dollars."