Symptom / Lifestyle Management Program for FM / CFS

[Diva55]

I read this on another support board. Could be interesting if you have the time / energy to attempt it.
Not sure about computer analysis though. But I suppose if a big enough database was built up it could lead to shared patterns and therefore shared strategies for help:

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 chronic illnesses since the 1980s, when he worked with patients of Dr. Daniel Peterson in Incline Village.


Copyright 2010 ProHealth, Inc.
Printed From: http://www.prohealth.com/library/showarticle.cfm?libid=15239

 

[PoetInSF]

An excellent project, thanks for posting. Something I've been thinking about creating when I have more energy. A little too complex for my liking though. Just filling in the initial questionaire took quite a bit out of me. I would've preferred a simple activity/symptoms log with self-learning statistical model to predict crashes. But I can replace my personal log with it at least. I'll try different strategies a few weeks at a time and see what it says.

 

[Diva55]

Hi Poet
That's great you are giving it a go.
When I get more energy...sigh. I hope to have a good look at it.

Keep us up to date on what the program advises and if it's helpful.

Best wishes
Diva

An excellent project, thanks for posting. Something I've been thinking about creating when I have more energy. A little too complex for my liking though. Just filling in the initial questionaire took quite a bit out of me. I would've preferred a simple activity/symptoms log with self-learning statistical model to predict crashes. But I can replace my personal log with it at least. I'll try different strategies a few weeks at a time and see what it says.

 

[leelaplay]

Hi Diva - thanks for this. I'm interested in Poet's experience with it as well.

I'm always interested in the source of something.

So I looked up William Collinge. On his website he offers his 1993 publication, "Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment", for free.

I find that there he lists many of the strategies that I use for symptom management - here's the table of contents:

CONTENTS
Introduction by Daniel Peterson, M.D.
PART I. The Nature and Course of CFS
Chapter 1. From Illness to Insight: Understanding CFS
Chapter 2. Onset and the Chronic Phase: Symptoms and Cycles
Chapter 3. The Recovery Phase: When and Why Recovery Happens
Chapter 4. Your Immune System: How It Works, and How It is Affected in CFS
PART II. The Path of Self-Empowerment
Chapter 5. Coping with Your Symptoms
Chapter 6. Changing Your Lifestyle to Promote Recovery
Chapter 7. The Benefits of Mind/Body Medicine
Chapter 8. The Healing Power of Deep Relaxation
Chapter 9. Imagery and CFS
Chapter 10. Breath, Energy, and Emotion
Chapter 11. Supporting Your Inner Child
Chapter 12. Using Your Illness as a Teacher

APPENDICES (revised for the on-line version)
Appendix A. The Centers for Disease Control Revised Case Definition for CFS (2003)
Appendix B. Current Medical Treatments
Appendix C. Programs and Tapes with the Author
Appendix D. Mind/Body Medicine and Positive Health Transition in CFS (summary of study published in Subtle Energies & Energy Medicine)

My concern, of course, is that he is touting these techniques as a cure, rather than symptoms management, and actually uses this quote "Although it waxes and wanes, (patients) generally head slowly out of the woods with this illness. Recovery is... clearly the rule in the majority of patients..." (a different) Peterson summarizes his perspective by stating that "This is not an interminable disability. Patients do recover gradually."

THE RECOVERY PHASE
Until very recently, almost all the attention in dealing with the phenomenon of CFS has been on describing the syndrome and the search for causes. Very little attention has been given to describing the recovery process, or explaining why and how people recover. Now, as we gain more experience with people going into recovery, this subject is coming out of the closet.
Andrew Lloyd, Visiting Research Fellow at the Laboratory of Molecular Immunoregulation, National Cancer Institute, is one of the most articulate authorities on CFS research. Based on his observations of large scale research both in his native Australia and the United States, he affirms that recovery is indeed a realistic hope:
"Our overwhelming experience... has been that when recovery occurs, and we believe that it happens commonly, it is complete, and one can find no evidence, pathological or hematological, of any disorder whatsoever... Whatever the process is that produces this fatigue state appears to be completely reversible."
This perspective is reinforced by results of a study that followed the course of CFS in 135 patients in Minnesota. The study was directed by Phil Peterson, M.D., of the University of Minnesota Medical School and Hennepin County Medical Center in Minneapolis.
The results of that study led Peterson to conclude that "Although it waxes and wanes, (patients) generally head slowly out of the woods with this illness. Recovery is... clearly the rule in the majority of patients..." Peterson summarizes his perspective by stating that "This is not an interminable disability. Patients do recover gradually."
We have sufficient data and clinical experience by now to say that beyond the acute and chronic phases, there is a recovery phase to CFS. In the remainder of this chapter I will describe my observations and the findings of other researchers, on the recovery phase and the factors that influence it.

Now - this book is from 1993, and it is out of publication, so hopefully his understanding of the disease has grown since then. Dr Peterson did endorse the book (which I find odd).

Collinge has built a successful career. Projects include:

Partners in Healing: Simple Ways to Offer Support, Comfort and Care to a Loved One Facing Illness, published by Shambhala Publications; and

the Caring and Cancer Project, sponsored by the National Cancer Institute, has been completed. The DVD program Touch, Caring and Cancer: Simple Instruction for Family and Friends is now being used by cancer treatment centers, advocacy organizations, and caregivers across the country. This exciting new program enables family members to become part of the treatment team for their loved ones living with cancer. The program is available in English, Spanish and Chinese language versions.

The Fibromyalgia Wellness Project, sponsored by the National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS), is currently underway and accepting new participants. If you are living with FM and would like to participate please visit the project website for full details.

 

[leelaplay]

A point I'd be interested in is how long the timeline for a correlation between an action and symptom is. For many of us, PEM can set in anywhere from during an activity to a few days later. And relapses can occur for no reason.

I'm actually quite intrigued - but haven't got the energy to give it a go myself.

 

[PoetInSF]

Hi Poet
That's great you are giving it a go.
When I get more energy...sigh. I hope to have a good look at it.

Keep us up to date on what the program advises and if it's helpful.

Best wishes
Diva

Thanks. As I suspected, it needs polishing and simplification IMO. It's asking me to remember way too many things and I can't go back and edit entries... We'll see how it goes, but I'm not abandoning my personal log for now.

 

[PoetInSF]

And relapses can occur for no reason.

This is a common claim, but I'm not convinced that is the case. Once I stabilized, I could always trace to previous activities whenever I crash. (Explaining, of course, is not much of a value; predicting is). If it appears random, it could be because your threhold is so low and there is a large variance in the delay of PEM depending on the activities.

 

[rebecca1995]

A point I'd be interested in is how long the timeline for a correlation between an action and symptom is. For many of us, PEM can set in anywhere from during an activity to a few days later...

For me, five days is the maximum interval between an acitivity and the delayed crash/ post-exertional fatigue. Anyone ever have delayed PEM/PEF more than five days after over-doing it?

 

[Hope123]

This is a common claim, but I'm not convinced that is the case. Once I stabilized, I could always trace to previous activities whenever I crash. (Explaining, of course, is not much of a value; predicting is). If it appears random, it could be because your threhold is so low and there is a large variance in the delay of PEM depending on the activities.

No, I agree with IF that relapses can occur for no reason and so does Dr. Lapp, who has been treating CFS for over 15 years. So people should and can look for causes but should also accept that you might not find one and not be too hard on yourself. No one knows for sure what causes relapses -- if they did, they'd have solved half this illness.

Dr. Lapp: http://www.drlapp.net/resources.htm#Dealing with Relapses

Relapse is an inevitable part of CFS and FM. Just as many of the symptoms come and go in a cyclical pattern, relapse tends to come and go also. When relapses are short lived, perhaps 1-3 days, then we generally refer to them as a flare. A flare is frequently triggered by an acute stress (for example, a death in the family) or overexertion. A relapse, however, may last days, weeks, or months, depending on its severity, the cause, and how it is managed. When a flare occurs, one is advised to review recent activities and events (such as travel, illness, or special activities) that may have triggered this temporary downturn. On the other hand, I and many patients have agonizingly searched for the cause for relapses only to conclude that the majority occur spontaneously. You just have to expect that no matter how hard you try or how “good” you are, relapses are going to occur. Thus, the first step in handling a relapse, therefore, is to accept, then deal with it.