Fibromyalgia Community Newsletter #15
Monday, April 1, 2002

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Subscription update: 1472 members and 25 new members.

Welcome!

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Featured link: Managing Relapses

Relapses are an inevitable and often demoralizing part of chronic illness. Read what Patti Schmidt does to help her through the bad times in this week's feature article at the CFIDS/Fibromyalgia Self-Help website: http://CFIDSselfhelp.org. The article is another in our series "Success Stories," personal accounts of coping and recovery.

AOL users: <a href="http://www.cfidsselfhelp.org>Read it here</a>

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This week's news:
1) Opinion - Use of Mindfulness Meditation for Fibromyalgia
2) Abstract - A randomized, placebo-controlled, double-blind, flexible-dose study of fluoxetine in the treatment of women with fibromyalgia.
3) Abstract - Self-administered pain-relieving manoeuvres in primary headaches
4) Article - Rx for Overall Health: Friendship
5) Article - Strength Training May Ease Fibromyalgia Symptoms
6) Abstract - Cannabinoids and pain
7) Abstract - Beyond disability: Perceived participation in people with a chronic disabling condition.
8) Article - Connection between FMS and bacteriophages
9) Notice - VHA/DoD Clinical Practice Guideline for the Management of Medically Unexplained Symptoms: Chronic Pain and Fatigue
10) Notice - "I Remember Me" to be released on home video
11) Notice - Recall of Gamimune N immune globulin IV solution

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1)

Opinion: Use of Mindfulness Meditation for Fibromyalgia

Journal: Am Fam Physician 2002 Feb 1;65(3):380, 384 Author: David Von Weiss, M.D.
NLM Citation: PMID: 11858621

Letters to the Editor

TO THE EDITOR: I congratulate Drs. Millea and Holloway [1] on an excellent review of treatment options for fibromyalgia. However, the article overlooked mention of the use of mindfulness meditation for treatment in fibromyalgia. Mindfulness meditation is the intentional effort to pay nonjudgmental attention to present-moment experiences and sustain this attention over time. The aim is to cultivate a stable and nonreactive present-moment awareness. Kaplan and colleagues [2] demonstrated a significant improvement (40 to 50 percent) among patients with fibromyalgia utilizing mindfulness meditation. In this study, fibromyalgia was defined as a "chronic illness characterized by widespread pain, fatigue, sleep disturbance, and resistance to treatment." [2]

As a family physician who receives fibromyalgia referrals and teaches mindfulness meditation, I have found that patients are grateful for the improvement after learning this mind/body process. Usually, 25 percent of our mindfulness classes consist of patients with fibromyalgia. Often, the gentle stretching of mindful yoga is particularly beneficial; undoubtedly, some of its benefit comes from the active participation by the patient in a supportive group environment, as mentioned in the editorial that accompanied Millea and Holloway's review of fibromyalgia.
[3]

Mindfulness meditation is taught at over 250 sites around the country. A list of local teachers is available from the Center for Mindfulness in Medicine. [4] The excellent accompanying editorial [3] mentioned the complex of symptom-based diagnoses that are part of a sensory amplification syndrome. It is this group of patients who can benefit the most from mindfulness meditation.

DAVID VON WEISS, M.D.
Park-Nicollet Medical Center
1885 Plaza Drive Eagan, MN 55122

REFERENCES

1. Millea PJ, Holloway RL. Treating fibromyalgia. Am Fam Physician
2000;62:1575-82.
2. Kaplan KH, Goldenberg DL, Galvin-Nadeau M. The impact of a meditation-based stress reduction program on fibromyalgia. Gen Hosp Psychiatry 1993;15:284-9.
3. Clauw DJ. Treating fibromyalgia: science vs. art. Am Fam Physician
2000;62:1492, 1494.
4. Center for Mindfulness. University of Massachusetts Medical School. 55 Lake Avenue North. Worcester, MA 01655.


IN REPLY: We appreciate Dr. von Weiss's pointing out our oversight regarding mindfulness meditation in fibromyalgia. Practicing mindfulness meditation or one of the other trance-inducing techniques on a regular basis can produce remarkable benefits, including reduction in the morbidity associated with pain. [1] Kabat-Zinn and colleagues [2] define mindfulness meditation as "moment to moment, nonjudgmental awareness,"
and demonstrate how easily patients can be introduced through audio tapes to techniques used to enhance the treatment of chronic conditions.

Research is beginning to uncover the mechanism of action of these techniques. Tooley and associates [3] determined that melatonin levels increased significantly on the night following a period of meditation by experienced meditators. Lazar and colleagues [4] used functional magnetic resonance to study brain activity during meditation by experienced meditators and found significant increases in the regions of the brain associated with attention, modulation of pain perception and control of the autonomic nervous system. The use of Transcendental meditation has also been associated with improved cardiovascular functioning. [5] Our article [6] noted that some of these same neuroendocrine systems are directly implicated in the pathophysiology of fibromyalgia.

During meditation, a person focuses attention on sensations, including breathing, thoughts, or particular objects. Ideally, what is perceived is unimpeded by evaluative notions or current concerns for previous knowledge. Inhibiting these processes creates a space for awareness within which the perceived often reveals itself in a startling new and rich fashion. Mindfulness and related techniques are potential options when constructing a treatment plan for patients with fibromyalgia.

PAUL J. MILLEA, M.D., M.S.
RICHARD L. HOLLOWAY, PH.D.
Medical College of Wisconsin
8701 Watertown Plank Road Milwaukee, WI 53226

REFERENCES

1. Astin JA. Stress reduction through mindfulness meditation. Effects on psychological symptomatology, sense of control, and spiritual experiences. Psychother Psychosom 1997;66:97-106.
2. Kabat-Zinn J, Wheeler E, Light T, Skillings A, Scharf MJ, Cropley TG, et al. Influence of a mindfulness meditation-based stress reduction intervention on rates of skin clearing in patients with moderate to severe psoriasis undergoing phototherapy (UVB) and photochemotherapy (PUVA). Psychosom Med 1998;60:625-32.
3. Tooley GA, Armstrong SM, Norman TR, Sali A. Acute increases in night-time plasma melatonin levels following a period of meditation. Biol Psychol 2000;53:69-78.
4. Lazar SW, Bush G, Gollub RL, Fricchione GL, Khalsa G, Benson H.
Functional brain mapping of the relaxation response and meditation.
Neuroreport 2000;11:1581-5.
5. Castillo-Richmond A, Schneider RH, Alexander CN, Cook R, Myers H, Nidich S, et al. Effects of stress reduction on carotid atherosclerosis in hypertensive African Americans. Stroke 2000;31:568-73.
6. Millea PJ, Holloway RL. Treating Fibromyalgia. Am Fam Physician
2000;62:1575-82.

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2)

Abstract: A randomized, placebo-controlled, double-blind, flexible-dose study of fluoxetine in the treatment of women with fibromyalgia.

Am J Med 2002 Feb 15;112(3):191-7 Arnold LM, Hess EV, Hudson JI, Welge JA, Berno SE, Keck PE.
Women's Health Research Program (LMA, SEB), Department of Psychiatry, University of Cincinnati Medical Center, Cincinnati, Ohio, USA

To assess the efficacy of fluoxetine [note: U.S. brand name: Prozac] in the treatment of patients with fibromyalgia.

Sixty outpatients (all women, aged 21-71 years) with fibromyalgia were randomly assigned to receive fluoxetine (10-80 mg/d) or placebo for 12 weeks in a double-blind, parallel-group, flexible-dose study. The primary outcome measures were the Fibromyalgia Impact Questionnaire total score (score range, 0 [no impact] to 80) and pain score (score range, 0-10). Secondary measures included the McGill Pain Questionnaire, change in the number of tender points, and total myalgic score.

In the intent-to-treat analysis, women who received fluoxetine (mean [+/- SD] dose, 45 +/- 25 mg/d) had significant (P = 0.005) improvement in the Fibromyalgia Impact Questionnaire total score compared with those who received placebo, with a difference of -12 (95% confidence interval [CI]: -19 to -4). They also had significant (P = 0.002) improvement in the Fibromyalgia Impact Questionnaire pain score (difference, -2.2 [95% CI: -3.6 to -0.9]), as well as in the Fibromyalgia Impact Questionnaire fatigue (P = 0.05) and depression (P = 0.01) scores and the McGill Pain Questionnaire (P = 0.01), when compared with subjects who received placebo.

Although counts for the number of tender points and total myalgic scores improved more in the fluoxetine group than in the placebo group, these differences were not statistically significant. In a 12-week, flexible-dose, placebo-controlled trial, fluoxetine was found to be effective on most outcome measures and generally well tolerated in women with fibromyalgia.

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3)

Abstract: Self-administered pain-relieving manoeuvres in primary headaches

Zanchin, G., F. Maggioni, et al. (2001). "Self-administered pain-relieving manoeuvres in primary headaches." Cephalalgia 21(7): 718-26.

We investigated the use of self-administered pain-relieving manoeuvres on a sample of 400 patients with primary headaches--represented by an even distribution of migraine without aura (MO), migraine with aura (MA), episodic tension-type headache (TH), and cluster headache (CH)--consecutively seen at Padua and Parma Headache Centres. Manoeuvres on various regions of the head were used by 258 patients (65% of the cases).
The most applied procedures were: compression (114 out of 382 manoeuvres;
30%), application of cold (27%), massage (25%) and application of heat (8%).
A significant (P < 0.001) relationship was found between headache diagnoses and type of manoeuvre. In MO patients the application of cold (38% of the manoeuvres) and compression (36%), used mainly on the forehead and temples, prevailed; compression, mainly on the temples, was the most frequent procedure (44%) in MA patients. Massage on the temples and nape was the predominant manoeuvre (43%) in TH patients, whereas in the CH group, which more often required heterogeneous procedures, none of the above-mentioned manoeuvres was prevalent. Compression, as a diagnostic criterion for MO, had a sensitivity of 33% and a specificity of 86%; for the application of cold the figures were 36% and 84%, respectively. Massage had a sensitivity of 33% and a specificity of 80% for TH. The efficacy of the self-administered manoeuvres in reducing pain was scarce. Only 8% of the manoeuvres, in fact, resulted in a good or excellent pain control. Moreover, the efficacy of the manoeuvre was often momentary, wearing off when the manoeuvre stopped. In spite of this, 46% of the subjects used the manoeuvres constantly, at each attack.

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4)

Rx for Overall Health: Friendship

"Being socially interactive and [doing] things you want to do . . . whether that's talking or sharing activities, can keep you healthier."
-- Bruce Rabin, M.D., medical director of the University of Pittsburgh Medical Center Health Enhancement Program


By now, we all know that stress is harmful to our health, but a reminder never hurts. Even if stress isn't a headache trigger for you, it can affect other areas of your health, and affect your headache disorder in that way.

How does stress affect your body?

During times of stress, some parts of your brain become more active, resulting in elevated levels of the stress hormones, cortisol and the catecholamines, norepinephrine, epinephrine, adrenalin, and dopamine. These hormones, produced in the adrenal glands, are necessary to the body in the day-to-day challenges we all face. However, when these levels are heightened for extended periods of time, they can become harmful, affecting blood glucose levels, healing, bone density, and the aging process. The immune system may function poorly and neurons in your brain may be affected, compromising mental function.

Dealing with stress:

Obviously, we can't eliminate all stress from our lives, so we need to develop and employ coping strategies. Dr. Rabin comments:

"Being optimistic, having a sense of humor, being physically fit, and being religious or spiritual are all part of the package--and none is more important than another. It's a lifestyle that combines all these factors that will help you in the long run... The more types of friends you have, the better... Seek out friends from a variety of settings, including your family, your workplace, and your place of worship. It doesn't matter much where, so long as you get out there and mingle."

According to a study conducted at UCLA, women seem to naturally seek out friends as a response to stress. Shelley E. Taylor, Ph.D., a psychology professor and principal investigator of the study, calls this pattern "tend and befriend." Females of many species, including our own, respond to stress by protecting and nurturing their young (the "tend" response) and by seeking social contact and support from others (the "befriend" response). This is in contrast to the more familiar "fight or flight" behavior that many of us of both genders use to cope with stress. The "tend-and-befriend" response may be biological in origin, the UCLA researchers say, being connected to:

The hormone oxytocin.
Sex hormones.
The body's natural opioid (pain-killer) system.

The UCLA study also demonstrated that women are more likely than men to "befriend," to seek social contact in stressful situations. Taylor also said, "The different ways that men and women respond to stress, may lead researchers to understand why men are more likely than women to suffer stress's harmful effects."

Gerald Ellison, Ph.D., director of Psychoneuroimmunology Services at Cancer Treatment Centers of America in Tulsa, Oklahoma, is another proponent of friendship for managing stress. He observed,

"Friends keep us from becoming isolated and lonely; they offer encouragement and support; and they help keep our thinking in line with the real world... When we're missing friendship, we experience isolation and loneliness. These feelings are associated with illness, discomfort, and general ineffectiveness as a person... Having friends can also be especially helpful if you're already seriously ill... Friends--if supportive and encouraging--can increase our hope when dealing with illness and trauma. And increased hope is associated with higher levels of immune system functioning."

Summary:

Friendship is a sound prescription in times of stress, for both our emotional and physical health. Dr. Ellison's statement seems a fitting summary:
"Friends--if supportive and encouraging--can increase our hope when dealing with illness and trauma. And increased hope is associated with higher levels of immune system functioning."

1 Carol Sorgen, "To Stay Healthy . . . Make Friends," Medscape Health for Consumers. December, 2001.
http://health.medscape.com/viewarticle/411465
AOL users: <a href="http://health.medscape.com/viewarticle/411465>Read it here</a>

© Teri Robert, 2002 About, Inc.

http://headaches.about.com/library/nosearch/n-rx-friendship-a.htm

AOL users: <a href="http://headaches.about.com/library/nosearch/n-rx-friendship-a.htm">Read it here</a>

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5)

Strength Training May Ease Fibromyalgia Symptoms

Wed Feb 27,12:11 PM ET

NEW YORK (Reuters Health) - An exercise plan that includes strength training and aerobic activity may help women with the painful disorder fibromyalgia, the results of a small study suggest.

Fibromyalgia is a chronic condition marked by widespread muscular and joint pain, as well as specific "tender" points that typically occur in the neck, spine, hips and shoulders. Other symptoms include sleep disturbances and fatigue, depression and irritable bowel syndrome.

The condition is seen most often in women of reproductive age.

While there is no known cause or cure for fibromyalgia, there is evidence that exercise can help alleviate symptoms. But most of this research has focused on aerobic exercise to boost cardiovascular conditioning, to the exclusion of strength training, according to the authors of the new study.

This is in part due to concerns that strength conditioning could exacerbate fibromyalgia symptoms or cause injury, note Dr. Daniel S. Rooks, of the Harvard Institute of Medicine in Boston, Massachusetts, and his colleagues.

But their study of 15 women who completed a 20-week exercise program showed that a mixture of aerobic activity and strength conditioning can in fact improve fibromyalgia symptoms.

The researchers report their findings in the current issue of the journal Arthritis Care and Research.

Rooks and his colleagues had the women go through a progressive regimen that started with pool exercises to improve their joint movement, then moved on to walking and strengthening exercises with hand weights, machines and the body's own resistance.

After 20 weeks, the women's muscle strength and endurance improved overall--as did their symptoms of pain, stiffness, fatigue and depression, the researchers report.

"These findings demonstrate that an exercise program that includes strength training activities can be safe, feasible, and beneficial for persons with fibromyalgia syndrome," Rooks and colleagues write.

Larger, controlled trials are needed to lay out specific exercise guidelines for fibromyalgia patients, the authors note.

For now, they conclude, "these data support the inclusion of strength training as part of the recommended regimen of exercise for women with fibromyalgia syndrome."

SOURCE: Arthritis Care and Research 2002;47:22-28.

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6)

Cannabinoids and pain

Rice, A. S. (2001). Current Opinion in Investigational Drugs 2(3): 399-414.

Recent advances have dramatically increased our understanding of cannabinoid pharmacology: the psychoactive constituents of Cannabis sativa have been isolated, synthetic cannabinoids described and an endocannabinoid system identified, together with its component receptors, ligands and their biochemistry. Strong laboratory evidence now underwrites anecdotal claims of cannabinoid analgesia in inflammatory and neuropathic pain. Sites of analgesic action have been identified in brain, spinal cord and the periphery, with the latter two presenting attractive targets for divorcing the analgesic and psychotrophic effects of cannabinoids. Clinical trials are now required, but are hindered by a paucity of cannabinoids of suitable bioavailability and therapeutic ratio. [References: 188]

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7)

Beyond disability: Perceived participation in people with a chronic disabling condition.

Journal: Clin Rehabil 2002 Feb;16(1):27-35

Authors: Cardol M, de Jong BA, van den Bos GA, Beelem A, de Groot IJ, de Haan RJ.

Affiliations: Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, The Netherlands. mailto:M.Ca-@nivel.nl

NLM Citation: PMID: 11841066

OBJECTIVE: To describe the impact of a chronic disabling condition on participation and to identify variables that may explain perceived restrictions in participation.

STUDY DESIGN: Cross-sectional.

SETTING: People were recruited from the outpatient clinics of two rehabilitation centres and the rehabilitation department of an academic hospital.

SUBJECTS: One hundred and twenty-six people from five diagnostic groups (neuromuscular disease, rheumatoid arthritis, spinal cord injury, stroke, fibromyalgia) participated in the study.

METHOD: The IPA (Impact on Participation and Autonomy) questionnaire was used to describe perceived participation. Explanatory variables were studied in terms of sociodemographic factors and health status variables.


RESULTS: Some restrictions in participation seem comparable among diagnostic groups, others are specific to one or two groups. People with stroke, rheumatoid arthritis or fibromyalgia perceived more restrictions in participation than people with spinal cord injury or neuromuscular disorders. Emotional distress was the most important factor contributing to restrictions in participation.

CONCLUSIONS: Perceived participation remains a complex concept in which many factors are involved. To make a contribution to meaningful participation of people with a chronic disabling condition, rehabilitation treatment should address physical, social, emotional and environmental aspects.

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8)

Connection between FMS and bacteriophages

By Theophil Hey, M.D.

Based on the scientific results of twelve years of continuous investigation we now regard as proven that a connection exists between Primary Fibromyalgia Syndrome (PFS) and evidence of bacteriophages (specific E. koli phages) found in the stool of patients.

The virology department of the Medical College in Hanover (MHH) used electron- microscopes to detect bacteriophages (viruses) in the stool of more than 80% of patients examined. By comparison, they were detected in only 12 - 13% of the control group. Scientifically speaking, this result is deemed to be of great scientific significance.

Read the complete article at http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3426&EM=031302&PROD=PH123

[AOL: <a href="http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3426&EM=031302&PROD=PH123">Read it here<a>]

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9)

NOTICE - VHA/DoD Clinical Practice Guideline for the Management of Medically Unexplained Symptoms: Chronic Pain and Fatigue

In the January 24, 2002 Congressional Hearing, the government's Dr.William Winkenwerder stated that they would have "patient-centered, evidence-based clinical practice guidelines" implemented this month. A "pending approval"(dated July 2001) version CFS/FM portions of this guideline, can be found at:

http://www.cs.amedd.army.mil/qmo/mus/guideline.doc
AOL users: <a href="http://www.cs.amedd.army.mil/qmo/mus/guideline.doc">Read it here</a>

[Moderator's Note: Because many can't fully utilize MS WORD documents, we have placed an HTML and PDF version on our Web site:

HTML version: http://www.co-cure.org/GWS/guideline.htm
AOL users: <a href="http://www.co-cure.org/GWS/guideline.htm">Read it here</a>

PDF version: http://www.co-cure.org/GWS/guideline.pdf
AOL users: <a href="http://www.co-cure.org/GWS/guideline.pdf">Read it here</a>

The PDF version requires an Acrobat reader. If you don't have one, it can be downloaded for free at http://www.adobe.com/products/acrobat/readstep2.html
AOL users: <a href="http://www.adobe.com/products/acrobat/readstep2.html">Download it here</a>


Both versions are long files. Depending on your Internet connection speed, it's possible you may time out accessing these versions. If so, hit your browser's refresh button.

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10)

"I Remember Me" to be released on home video

Fueled by the same rage at an unresponsive system that has birthed many a great social documentary, filmmaker Kim Snyder has taken up the mantle for the over 500,000 sufferers of Chronic Fatigue Syndrome (CFS) living in the United States today. Afflicted with CFS herself, Snyder interweaves her own four years of fighting with the stories of others who face the same challenges, from U.S. Women's Soccer Star Michelle Akers to filmmaker Blake Edwards to a high school senior preparing to attend his graduation after a two year absence.

"Simultaneously beautiful and haunting, I REMEMBER ME demystifies Chronic Fatigue Syndrome with a compelling, almost palpable force."
- Elizabeth Karlsberg, Santa Barbara News-Press

I REMEMBER ME WILL BE RELEASED ON HOME VIDEO ON MAY 28th 2002

If you'd like to be put on a mailing list to receive a reminder and ordering information send us an e-mail at we-@zeitgeistfilm.com with "I REMEMBER ME HOME VIDEO" as the subject heading.

http://www.zeitgeistfilm.com/current/irememberme/irememberme.html
AOL users: <a href="http://www.zeitgeistfilm.com/current/irememberme/irememberme.html">Read it here</a>

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11)

Notice - Recall of Gamimune N immune globulin IV solution The Immune Deficiency Foundation has received notice of a recall of Gamimune N, 10% Lot 648X062, expiration date 7/16/2004. The recall was posted by the FDA's Center for Biologics Evaluation and Research on March 14, 2002.

This is the second recall of Gamimune N, 10% in 2002. The previous recall of Gamimune N, 10% Lot 648X078, expiration date 8/24/2004, was initiated on February 1, 2002.

Customers reported describing the presence of a white precipitate in vials from both lots. The material has been identified as immunoglobulin.

The initial investigation by Bayer of the returned vials of the most recently recalled lot also identified unexpectedly low protein concentration, elevated chloride, and the presence of bacteria....."

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