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Fibromyalgia Wellness Project Now Also Welcoming People with CFS to Join NIH Study

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An NIH-sponsored project to help people with FM discover personally effective ways to reduce symptoms is now also accepting people with CFS who would like to participate (whether or not they have FM).

The online project, called the FM Wellness Project (www.fmwellness.org), is being sponsored by the NIH’s National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS), and conducted by Collinge and Associates. Availability remains free until July 1.

The project uses a web-based program that:

• Enables users to track their daily health management behaviors over time,
• Combines this information with their daily records of symptoms,
• Gives them personalized feedback on what strategies are working best for them to reduce symptoms,
• Then encourages iterative experimentation to identify further improvements.

Feedback is Completely Unique

“The program treats everyone as a unique individual,” says Dr. William Collinge, PhD, MPH,* the project’s principal investigator. “The individual user isn’t being compared to anyone else, and the feedback she (or he) gets is completely unique and personal for her, based on the data that only she has entered over time.”

The focus on the uniqueness of the individual represents a breakthrough in health management strategies for people with FM. Previously, such programs relied on pooled data from populations or groups of subjects. In that approach, the uniqueness of the individual is lost, and users are given advice based on what the patterns of effects are in the whole population or sample of subjects, regardless of whether it actually applies to a given individual.

This new approach is far superior, because it focuses completely on what works for a given individual regardless of its relevance for others.

Builds Up a Detailed Database

The FM Wellness Project focuses on management of symptoms that are very familiar to most people who have CFS – in fact, FM and CFS are co-occurring conditions in many sufferers of either. The symptoms being followed are:

• pain,
• stiffness,
• fatigue,
• concentration problems,
• memory problems,
• anxiety,
• depression,
• gastrointestinal,
• sleep disorders,
• and any “other” symptoms the user would like to follow.

When people use the program for a few minutes several times per week, they quickly build up a database of information about themselves (no one else sees it).

Computer Analysis Identifies Patterns & Connections

After about a month, a special statistical analysis program goes to work and begins looking for patterns that reveal ‘secrets’ to the user which she can implement that will, according to her own symptom history, reduce her symptoms.

The user receives Profile Statements, revealing patterns that may not be obvious to her/him. Here are a few sample statements received by users:

• You have less stiffness when your evening snack is no more than light.
• You have less difficulty sleeping when your afternoon mind/body/spirit practice lasts no more than 15 minutes.
• Your difficulty waking up in the morning is less when you bathe in the evening for no more than 7 minutes.
• You have less fatigue when your evening exercise lasts for no more than 5 minutes.
• Your anxiety level is less when you exercise at least 10 minutes in the morning.

Experimenting to Glean Further Discoveries  

Users can then follow the advice if they wish, and are also encouraged to experiment with different behaviors each day, to discover new ways to reduce symptoms. For example, a user might try going to bed at a different time, either later or earlier. Or try eating a lighter evening meal, or eating earlier in the evening, to see if these changes result in reduced symptoms over time.

Users can even discover the effects of medications or herbs, or even different dosages.

To keep track of all this on one’s own would be a daunting task, but the automation of the information and analysis makes it easy for anyone to get this kind of feedback with minimal effort.

According to Dr. Collinge, “The ‘SMART’ program is the first symptom management program that gives this unprecedented level of personal feedback.” In the future, the program may become available to the general public.

For now, people with FM and/or CFS are invited to visit the project website at www.fmwellness.org, learn more about the program and participants’ findings, and begin using it. Free availability of the program is scheduled to end July 1, 2010.
* William Collinge has been developing and writing about innovative rehab & empowerment programs for those with ME/CFS, FM, and other chonic illnesses since the 1980s, when he worked with patients of Dr. Daniel Peterson in Incline Village.

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