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Welcome to the Fibromyalgia Wellness Project, a research study sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health. This project is  conducted by Collinge and Associates, an independent research organization directed by William Collinge, PhD. The project is now inviting participation by people living with fibromyalgia.

NOTE: People with CFS (chronic fatigue syndrome) who would like to participate are now welcome to join the project, whether or not they have FM.

Project Description:

Fibromyalgia (FM) is a long-term chronic illness that touches millions of lives. While there is presently no medical cure, different approaches to treatment and symptom management help reduce symptoms to different degrees in different people. One way the person with FM may be able to have significant impact is through the careful management of lifestyle and behavior factors that affect symptom levels. However, since each person is unique, management of FM needs to be highly individualized.

Because there are so many options and influences to consider, one challenge  people with FM face is discovering what strategies work best for them. The purpose of the FM Wellness Project is to evaluate a completely individualized approach to symptom reduction. The goal is to empower users with uniquely personal insights into what strategies work best for them over time.

Participation involves visiting this website several times each week, about 5-10 minutes each time, to complete the SMARTLog. “SMART” is an acronym meaning Self-Monitoring and Review Tool. Like a diary, the SMARTLog records your activities, treatments, strategies, stresses, other inputs you want to evaluate, and your symptom levels for the past 24 hours.

By completing the SMARTLog several times each week you build a personal database over time. This project is pioneering a new statistical analysis approach that will evaluate your personal data each week to discover patterns of connection between your inputs and your symptom levels. When these patterns are found they are reported to you in your unique SMART Profile. The purpose of SMART Profile is to give you accurate, personalized feedback based on your own data, and no one else’s, about what inputs lead to reduced symptom levels for you.

What are the benefits?

  • You may discover new ways to reduce your symptoms and improve the quality of your life.

  • You will be contributing to knowledge that may help others living with fibromyalgia.

Who is eligible?

  • Adults (over 18) with fibromyalgia.

  • You must be able to read English and complete the assessment forms on this website.

  • You must have daily access to the internet at home to use SMARTLog.

What is involved?

  • Read the Consent Form and attest to your understanding and agreement.

  • Complete the Application Form on this site.

  • Fill out monthly surveys (10-20 minutes) on your well-being and quality of life, at the beginning of each month of use of the website, and at the end of the study period.

  • Complete the SMARTLog several times each week (about 5-10 minutes each time). You can do this in the evening before bed, or in several visits through the day.

  • Ask for and receive SMART Profiles telling you what inputs lead to reduced symptoms for you.

  • Try out new strategies on your own or treatments to see if they help you to reduce your  symptoms.

How long is the study?

This study is being conducted in two stages:

-- The first stage (“Alpha”) is three months.

-- The second stage (“Beta”) will be nine months.

-- You can participate in either or both stages.

The longer you participate, the more likely you are to learn strategies that reduce your symptoms. We recommend at least three months.

You are free to withdraw at any time.

About Privacy

Participation is anonymous over this website. No medical records are collected. You are not required to disclose your personal identity. You will need an email address as a username for access to the site. To preserve your identity you can use an anonymous email address if you wish (e.g., Yahoo, Hotmail), and discard it after the study. We will use the address you provide for communication related to the project, but will not share it with anyone outside the project.

Where can I read the complete details?

Click here to go to the Consent Form which gives full details about participation.

How do I apply?

After you complete the Consent Form you will be taken to the Application Form.

What if I have a question?

Complete details about the project are provided in the Consent Form. If after reading the Consent Form you still have a question please visit the Project FAQs link.

 

 

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