CFS/FMS News July / August 2004
of South West Florida WWW.CFS-FMS-FL.ORG
Meeting Third Saturday of the month, 10:30AM to Noon at the Cape Coral Hospital,
In the ‘New Café’, 636 Del Prado Boulevard, Cape Coral.
July 10 – Round table discussion lead by a licensed counselor
August 21 - Round table discussion lead by a licensed counselor
Handouts on Chronic Fatigue and Fibromyalgia are available at every meeting. A therapist leads round table discussion. Information and support is shared by all. Perfume and scent free due to sensitivities. Programs announced as available.
Newsletters are published every other month.
If you received this newsletter in the mail it means we do not have your e-mail address.
Visit our very own web site at www.CFS-FMS-FL.org
It is not the number of breaths you take that make a life,
It is the moments that take your breath away.
From the Editor
Exciting to see so many at the last support group meeting, especially in the summer when many migrate northwards to escape the humidity. Kudos to all the brave souls who managed the trip!
Please let us know if you have an email address and please drop a buck or two in the hat at the next meeting to help defray costs of this newsletter and other costs. We are also in need of more literature about Fibromyalgia, Terry says it has been “flying out the door” over the last few months.
Have a cool summer!
Love and hope for all, Roxy Barber
239/541-3429
Posttraumatic Stress, Fibromyalgia Linked
From:ImmuneSupport.com e-newsletter 07-07-2004
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=5797
Chronic Pain Condition Seen in Half of Veterans With PTSD
This article looks at fibromyalgia as other than just a women’s disorder. “In a study of male Israeli war veterans, half of the men with combat-related PTSD also had the tenderness and pain characteristic of fibromyalgia. The findings were reported in Berlin at a European rheumatology meeting. There is a growing body of research linking posttraumatic stress and chronic pain, but the Israeli investigation is the first to limit its study population to males. "A consistent relationship has been seen between PTSD and chronic pain conditions like fibromyalgia," says psychologist John D. Otis, PhD, who is also studying the link in veterans. "The fact that the pain is often independent of the traumatic event leads us to believe that there is something else going on."
Patients with fibromyalgia should be evaluated for PTSD, and PTSD patients should be evaluated for the chronic pain condition. Behavioral and cognitive approaches to treatment may differ in patients with both disorders.
The Marshall Protocol for Treating Chronic Fatigue Syndrome
From: ImmuneSupport.com e-newsletter 07-06-2004
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=5784
CFS patients are buzzing about the Marshall Protocol for
relieving symptoms, a treatment originally developed for Sarcoidosis
patients. The article presents an interview with Trevor Marshall,
Ph.D., who devised the protocol and explains why he believes it works
for CFS patients.
“I came to the realization that sunlight was a factor in immune disease, but it took many years for all the elements of the Th1 immune reaction to gel together in my mind. Late in 1999 I noticed that a new class of drugs, "Angiotensin Receptor Blockers' (ARBs), were affecting the psyche of Sarcoidosis patients. Since I knew that ARBs should not have any such effect I commenced a full-time sabbatical in early 2001 to try and figure out exactly what was happening. The result of that research was a pathogenesis for Sarcoidosis, published in 2002. Since then we have conducted an Internet-based study of ARB and antibiotic therapy in Sarcoidosis, and are now exploring how our success can be generalized to all the Th1 immune diseases. The Autoimmunity Research Foundation is acting as a focus for our current efforts (AutoimmunityResearch.org)”
The protocol works at getting the body to recognize and kill tiny bacteria. Lab tests do not reveal antibodies to these bacteria.
“We found that you can measure a hormone (in the blood) resulting from the Th1 inflammation produced by these tiny bacteria, and that it is elevated in Sarcoidosis patients. It is also often elevated in CFS patients, indicating that the inflammation of CFS is often very similar to that of Sarcoidosis.
Our treatment protocol is split into two phases. The first phase lasts for about three months and is focused on getting the bacterial load down to a point where the endotoxins are no longer life-threatening. Then, in phase 2, we use additional (low-dose) antibiotics, making it almost impossible for the resistant bacteria to evade the immune system.
Phase 1 is available online at http://SarcInfo.com/phase1.pdf
Recently Dr. Scott Taylor and Penny Houle have started a message board at Yahoo Groups called "MarshallProtocol", and CFS patients have used the info from that site to work with their physicians to implement the protocol. It is still early days, but it seems the protocol is working just as well for these CFS sufferers as it did for the Sarcoidosis patients, most of whom have progressed to 'cure' over the last 2 years. (see our disclaimer below and do your own research!)
I would just say "don't take 'no' for an answer." For the last 100 years Sarcoidosis patients have been told that there is no known cause and no known cure for their disease (much the same prognosis being given to CFS and FM patients). The diagnosis of chronic sarcoidosis is regarded by pulmonologists as irreversible, they know their patient is dying, and that it is just a matter of time.
Yet the Sarcoidosis folks who have been helping us develop our protocol, are becoming healthy again. Not just 10%, or 25%, but close to 100% are recovering their lives and their families. They have variously reported regaining cognitive focus, stamina, and stable gait, and resolving chronic pain, paresthesias and visual disturbances. Some have been able to discard wheelchairs, braces and supplementary oxygen.”
Does Fibromyalgia Worsen Over Time?
From: Fibromyalgia Network News http://www.fmnetnews.com/pages/updates.html
“A six-year follow-up study of 45 FMS patients indicates that symptoms typically remain stable.(1) Patients who participated in this study had rated the severity of their symptoms during an earlier study, and were asked to rate them again six years later. The authors of this study found no change in sleep quality, morning stiffness, amount of medications used per week, functional ability, anxiety, or perceived severity of overall symptoms. Pain did increase, but patients expressed improved vitality and control over their symptoms, enabling them to cope better with the condition.”
This news mirrors what other experts have said, symptoms will remain but not worsen. (Except for flare ups of course!) It is suggested that if you are having a persistent worsening of health, it could be caused by another disorder developing that needs specific treatment.
Chemiacal, Food and Hormonal Aggravations
From: Holistic Help with Cynthia, Cynthia Perkins, M.Ed./Holistic Health Counselor
http://www.holistichelp.net/fibrotriggers.html
Cynthia found that her Fibromyalgia symptoms were aggravated by chemical exposures, certain foods, and hormonal fluctuations. Depending on her hormonal cycle she would be more vulnerable at some times than others. Not only chemicals but diet seemed to play a part in the overall mix, refined carbohydrates being a big enemy. Washing clothes in chlorine free water, showering in chlorine free water, organic whole foods, avoiding colognes and scented air fresheners, pesticides
“Why this happens, we can only speculate, but I believe that the chemicals are upsetting my body’s natural hormonal and endocrine balance. Scientists are now aware that many of the air-borne and food-borne chemicals we are constantly ingesting are endocrine-disrupters. These chemicals mimic estrogen in the body and may contribute to many problems. There is also evidence that refined carbohydrates may interfere with proper endocrine functioning.” (Estrogen is a vital hormone for men as well as women, so guys, don’t feel left out!)
“Some Fibromyalgia patients may feel that following a strict regimen of avoiding certain chemicals or following a strict diet may not give you enough improvement to justify the effort. However, there is recent evidence to suggest that chemical sensitivity can be the result of a liver dysfunction that is a component of a medical condition known as porphyria. Porphyria has been studied for decades, and…the disability can permanently worsen over time if the patient does not avoid the triggers of their episodes. Although this research is not yet conclusive, it creates cause for concern. If in fact Fibromyalgia, CFIDS, MCS and GWS are all related in some way or in fact really just one in the same and if all involve this typed of liver dysfunction, then avoidance of chemicals may be an important therapy for these patient groups. I would urge all FM patients to carefully evaluate the possibility that they are reacting to environmental triggers to prevent the possibility of a permanent worsening of their condition. “
Surfing
http://www.sover.net/~devstar/ Dr. Devin Starlanyl’s site on Fibromyalgia and Chronic Myofacial Pain
Disclaimer
The Chronic Fatigue and Fibromyalgia Syndromes Support Group is a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. This newsletter does not dispense medical advise not is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and will assume no responsibility for any treatment or activity undertaken by readers.
Contact
Bonnie Dewar 239/543-2812
Terry Connor 239/945-1247
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Send a request to Roxy at ... webeinflorida@juno.com