CFS Name Change Campaign Takes Off

I hope this letter finds you happy and enjoying good health. Our campaign to find a suitable name for Chronic Fatigue Syndrome that does not trivialize the illness - "Campaign for a Fair Name" - is making significant progress. Several of our readers questioned the "legitimacy" of a name that is selected by patients and not medical experts, and it is a point well taken. We are moving quickly to circumvent this scenario, and here's what we've accomplished so far:

We are organizing a group of experts to guide the patient community in developing a name that would be perceived as legitimate and acceptable to the medical establishment. This "CFS name change advisory committee" will consist of seven to ten of the world's leading CFS researchers, and the selection of members is actually not difficult: Only the most widely published and respected experts whose careers have revolved around the study and treatment of Chronic Fatigue Syndrome will be involved.

The purpose of this "dream team" will be to discuss and debate possible names, and to develop a consensus recommendation for the new name. Since our campaign will be primarily patient powered, it will be the CFS patient community's responsibility to determine the validity of this recommendation - and either accept or deny it on its merits.

Four of the nation's leading CFS experts have already been invited to sit on the committee; all four have graciously accepted. They include Dr. Lucinda Bateman, Dr. Leonard Jason, Dr. Charles Lapp, and the amazing Dr. Daniel Peterson.

As a first step, Dr. Jason of De Paul University has generously volunteered to design a process that will allow patients to have their voices heard and their votes tabulated. For those of you who are not aware of Dr. Jason's work, suffice it to say he was behind the landmark study indicating that approximately 900,000 Americans suffer from Chronic Fatigue Syndrome (using the stringent "Fukuda" case definition, which only includes patients who are the worst sufferers). He is easily one of the world's leading CFS researchers as measured by published, peer reviewed research, and we are lucky to have him on board.

We hope to complete formation of the "dream team" committee within the next several weeks. If you have followed CFS research for long, you can easily predict our hopefuls. Think credible, think famous, think big. That is our motto for this part of "Campaign for a Fair Name." Stay tuned.

Wishing you health and healing,

Rich Carson
ProHealth Founder and CFS Patient

A sampling of this week's letters, including comments on treatment and health strategies that may help "On the Road to Recovery."
(Letters on Rich's "Road to Recovery")
(Letters Sharing Insights and Needs)

Leading CFS Researcher/Author Declares War on Unhealthy Transfats

Professor Basant Puri - a world renowned CFS researcher and consultant at Hammersmith Hospital in London - pioneered the use of natural fatty acids such as fish oil and evening primrose oil to treat patients with Chronic Fatigue Syndrome and depression. Now he is lecturing across the British Isles on CFS and the need to ban the health-destroying "trans fats" found in many processed foods.   more

UK Researchers Apply for CFS "Diagnosis and Treatment" Patent

Two of the world's leading CFS gene researchers - Dr. John W. Gow and Dr. Abhijit Chaudhuri, working in Glaskow, Scotland - have applied to the European Patent Office for a patent of their "invention" to diagnose and treat CFS.   more

Faster, Cheaper, More Comprehensive Test for Differential Diagnosis of Respiratory Illness/Flu Pathogens Developed at Columbia University

Based on research to identify the "mysterious viruses" that caused respiratory illnesses in New York in 2004, researchers at Columbia's Infectious Disease Laboratory in New York report they have developed a revolutionary diagnostic tool for pinpointing respiratory/flu symptom-related pathogens.   more

Applying for Social Security Disability and Supplemental Security Income

Based on his 28-year career as a representative of Social Security Disability claimants in the Pacific Northwest, a seasoned attorney provides a "primer" on what prospective claimants need to do and how they need to prepare.*   more

Just Say "Know" To Prescription Drugs - A Patient Empowerment Tool

This global initiative offers a simple form you can print and submit to your healthcare providers - asking them to signify that they've reviewed the pertinent facts about your prescribed medications with you. The idea could save your life or health.*   more

Multinational Phase III Trial of Dopamine Drug Reports Highly Significant Reduction of Restless Legs Syndrome Symptoms

Rotigotine is designed to mimic the action of dopamine - which the body naturally produces to support transmission of messages in the central nervous system and thus proper motor functioning. The drug, delivered at a constant level via transdermal patch, has produced very encouraging results so far and is now entering a decisive round in testing as a therapy for symptoms of RLS.   more

The Placebo Effect

One gadfly health researcher/educator's cautionary take on the placebo, a key element of many clinical trials; plus a look at the so-called active placebo and the nocebo - "placebo's evil twin."*   more

Faces of CFS Traveling Photo Exhibit - In California

The exhibit, which is drawing media attention and generating public understanding at every stop, will appear in three cities in the next four weeks.   more

This week's collection of new abstracts features the culmination of a series of studies - some published and some just submitted for publication - that together comprise a newly published 165-page doctoral thesis titled "Exploring Chronic Fatigue Syndrome in Adolescents" by Elisabeth Machteld van de Putte, a researcher at Utrecht University in the Netherlands.   more

33 Locations Recruiting FM Patients for Sleep/Pain Drug Trial

Will Xyrem® (sodium oxybate) become the first pharmaceutical drug approved by the FDA and similar agencies for treatment of Fibromyalgia symptoms? If so, its marketers are poised to offer it on a global scale. Currently, 33 U.S. phase III trial sites in 20 states are recruiting subjects for 21-week participation periods.   more

Miles Logged - Miles to Go

We have logged many miles on our new journey. We have traveled many roads that were unfamiliar to us, yet we haven't gotten lost. We may have been side-tracked, or delayed from time to time, but not lost. For that we can be proud and grateful. However, we have miles to go, as our new lives have just begun. The road of hopes, dreams, happiness and serenity has yet to be taken. We still have many miles to go. Today we have the choice to stop with what miles we have logged, or to continue down unexplored roads.

From Living With Chronic Pain One Day At A Time, by Mark Allen Zabawa

The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep.
- Robert Frost

At ProHealth we are committed to bringing you the most up-to-date information on Chronic Fatigue Syndrome and Fibromyalgia. We are always striving to improve our services, and your opinion counts. If you have any comments, suggestions or ideas, please let us know. Include your full name if you agree that we might share your letter with other readers.

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