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CFS Empowerment Project

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Excerpts of the CFS Empowerment Project

In 2006, the CFS Empowerment Project Website was removed from the Internet due to out of date contact information for some resources. Many of the suggestions and articles there are still very valuable to people with CFS and FMS and the like. Even the out of date resources gave a clue as to what kinds of help and services to look for.

Renee R. Taylor, PhD, Clinical Psychologist,
now of the University of Illinois at Chicago,
led the team that implemented the Project.

Sorry to see it removed with no possibility of update at its orginial source, we've
created replicas of its About the Curriculum Page and its Coping Page below.  We've also incorporated its information about Hiring a Personal Assistant into our
Q&A, Our Way: Help Around the House.



Research evaluating the effectiveness of this project are available by
searching for Renee Taylor at National Rehab Information Center.
The National Rehabilitation Information Center (NARIC) is a library and
information center focusing on disability and rehabilitation research.


The Chronic Fatigue Syndrome
Empowerment Project

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About the Curriculum

This curriculum was created as part of the Chronic Fatigue Syndrome Empowerment Project funded by the US Department of Education National Institute on Disability and Rehabilitation Research. This was a program designed to facilitate coping and symptom management for people with Chronic Fatigue Synrome (CFS). It is our hope that the information found in the pages of this curriculum will help persons with Chronic Fatigue Syndrome and all those working with them implement a similar program in their setting. The curriculum contains a review of the group phase, which is an eight-week program designed for and by persons with Chronic Fatigue Syndrome. It is divided into eight sections each representing a specific group topic addressing an issue of concern for people with CFS.


Helpful Information about using the Curriculum

This curriculum is divided into 8 sections:

Personal Relationships
Activity Pacing (The Envelope Theory)
Current Medical Approaches
Alternative Medical Approaches
Self-relaxation and Meditation
Coping
Economic Self-Sufficiency and Employment Issues
Nutritional approaches

The information in each section is the information that was discussed and distributed to members during the group meetings. In the curriculum, we make reference to Centers for Independent Living as a community-based, advocacy-oriented organizations designed to facilitate empowerment and equal access for individuals with disabilities. Centers for Independent Living around your area can be found in the yellow pages or can be accessed by visiting the Internet at www.ilru.org.

Disclaimer: The information in this website is for informational purposes only and is not to be considered medical or psychological advice. The material was created by and for People with Chronic Fatigue Syndrome as a peer-based network of information. Readers are encouraged to confirm the information contained herein with other sources. References to any entity, product, service, or source of information in this site should not be considered an endorsement, either direct or implied. Consult with a licensed health care provider knowledgeable about CFS concerning any information you find in this site to determine the appropriateness for your specific situation. Neither the CFS Empowerment Project  nor its Affiliates is responsible for the content of any web pages referenced in this web site. Neither the CFS Empowerment Project nor its Affiliates will be liable for any direct, indirect, consequential, special, exemplary, or other damages arising therefrom.

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The Chronic Fatigue Syndrome
Empowerment Project

Coping Information

About this topic: This approach, supported by research, offers people with CFS tips in coping with the following symptoms:
memory and concentration difficulties

fatigue
pain
challenges to self-image
illness-associated depression
illness-associated anxiety


Positive Behavioral, Mental and Emotional Coping Strategies

Positive coping strategies such as deep relaxation and self-affirmations can improve quality of life, while negative forms of coping such as denial and self-pity tend to disrupt good feelings and may increase symptom severity (Friedberg 1999). Positive coping skills can be developed to counteract negative self-evaluations, discouragement, and frustrations over functional limitations (Friedberg 1999).

Suggestions to help people with chronic fatigue syndrome examine their reactions to their illness

Ask yourself the following:

What have I lost because of CFS?
How do I respond to the routine and often empty "How are you"?
How do I react to the often-heard statement "But you look so good"?
How do I feel when others give the impression that "I should/can heal myself"?
Do I have at least one social and/or emotional confidante? (Friedberg & Jason, 1998).
Am I practicing the principles of the Independent Living Philosophy?

Do I use affirmations, specific phrases designed to motivate and inspire, in order to sustain my optimism, self-esteem, and to direct meaningful activities (Friedberg & Jason, 1998). For example: 

I am entitled to take time for myself.
I am a strong person.
I can develop/discover new income opportunities and social activities for myself.
I may not be able to eliminate my symptoms but I can control my reactions to them.
I am not responsible for the CFS education of others; I am responsible for my own
   CFS education and I can control what I learn and when I learn it (Johnson, 2000).


Am I willing to practice Pleasant Mood Induction techniques?

Compose a list of 5 to 10 things that make me laugh and try to engage in at least
          one of these activities each day.
Participate in an activity (or at least imagine one) that will uplift my mood and
          create a pleasant emotional state.
Make a list of 5 to 10 low effort, uplifting activities and
          try to engage in at least one of these activities a week (Friedberg, 1999).

What relaxation techniques do I use on a daily basis?

Relaxation tapes
"White noise" (or tranquil background music) machines
Meditation
Deep breathing
Stress management class (or a book on this topic)
Gentle self-directed movement therapy

Do I practice activity management by dividing my daily schedule into work, rest and fun (Friedberg, 1999)? 
Am I overexerting myself?
Am I under-challenging myself?
Am I allowing equal amounts of time for self-nurturing (rest) and
          social/recreational activities contacts (non-CFS) as I allow for work?
How do I arrange my daily activities?
Am I allowing myself to fall into an overwork-collapsed lifestyle?
Am I allowing myself to fall into an under-challenged/invalid lifestyle?
Am I carefully watching my energy levels (practicing the envelope theory) and
          allowing rest intervals?
Do I understand the basic idea behind graded activity 
         (principles of the envelope theory)?

Am I willing to:

Reduce the amount of activities I schedule for myself each day
Allow extra time to complete activities
Break tasks down into smaller activities (Friedberg, 1999)


Do I utilize memory assistance strategies (Friedberg, 1999)?
What cognitive dysfunction am I experiencing because of my CFS?
(Ex: difficulties with short-term memory and/or sustaining concentration)

Post-it notes
Daily planner
To do lists
Using alarms


What can I do to counteract this dysfunction?

Minimize distractions
Learn to do one thing at a time
Establish a routine
Write reminders to myself (Johnson, 2000)

Which takes more energy from a person with Chronic Fatigue Syndrome - being negative and feeling sorry for oneself, or reframing - developing a positive attitude and taking stock of what one has and what one can do?

What have I gained because of CFS?

• A less frantic lifestyle
• Ability to decide what is important to me
• Learning self care and relaxation techniques
• A greater appreciation of close interpersonal relationships (Friedberg & Jason 1998)
• Learning how to stop negative thinking and change these statements and thoughts
                   into positive ones
• Ability to decide what is important to me
• Ability to set my own goals and prioritize

Disclaimer: The information in this website is for informational purposes only and is not to be considered medical or psychological advice. The material was created by and for People with Chronic Fatigue Syndrome as a peer-based network of information. Readers are encouraged to confirm the information contained herein with other sources. References to any entity, product, service, or source of information in this site should not be considered an endorsement, either direct or implied. Consult with a licensed health care provider knowledgeable about CFS concerning any information you find in this site to determine the appropriateness for your specific situation. Neither the CFS Empowerment Project  nor its Affiliates is responsible for the content of any web pages referenced in this web site. Neither the CFS Empowerment Project nor its Affiliates will be liable for any direct, indirect, consequential, special, exemplary, or other damages arising therefrom.

HOME | PROJECT | RESEARCH TEAM | CURRICULUM | RESOURCE DIRECTORY | PUBLICATIONS AND PRESENTATIONS | LINKS



From the CFS Empowerment Project



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Updated February 26,  2007