CISRA’s Synergy Health Newsletter

Issue 1. Introducing CISRA (Chronic Illness Support and Research Association) — 1997

by J. C. Waterhouse, Ph.D.

Summary

The first article of this issue of the CISRA’s Synergy Health Newsletter, “Introducing CISRA”, discusses the rationale and potential role of the Chronic Illness Support and Research Association. Chronically ill people have many things in common in terms of stresses, health problems and iatrogenic illnesses and the complex medical systems and research advances that affect them. By linking support groups and providing ways for them to work together, it is hoped that patient interests will be better served by both government and private entities.

The second article, “Innovative Approaches to Fibromyalgia”, discusses 2 approaches that have potential for treating fibromyalgia syndrome (FMS) and other chronic illnesses. First, an Environmental Medicine approach uses the ELISA/ACT, a lymphocyte response assay, to determine the late phase (delayed, hidden) immune sensitivities to 340 foods, medications, food additives and environmental chemicals. A community-based controlled study of 32 fibromyalgia patients showed 30-50% reductions in fatigue, pain, irritable bowel syndrome, depression and other common symptoms after 6 months (Deuster and Jaffe, J. of Musculoskel. Pain to be published in Jan. 1998). It is significant that all fibromyalgia patients tested in this study had at least 15 immune sensitivities, suggesting that a heightened immune sensitivity level is a fundamental characteristic of fibromyalgia. This test is also likely to be helpful in many other chronic illnesses involving disruption of the immune system, such as chronic fatigue syndrome, lupus, multiple sclerosis and asthma.

The second innovative approach to fibromyalgia discussed in Part II is based on the theory that ATP, the basic energy molecule of all the body’s cells, is in short supply due to excess phosphate and calcium being stored in the cells. Dr. R. Paul St. Amand developed this theory after discovering that uricosuric drugs led to the disappearance of the hard and swollen muscle lesions (tender areas) observed in fibromyalgia (Clin. Bull. of Myofascial Therapy, Oct. 1997). After laboratory studies showing increases in phosphate excretion (and to a lesser extent, calcium and oxalate excretion) following treatment, he hypothesized that fibromyalgia was due to an inadequate excretion of phosphate by the kidney. Thus, it appears that sufficient doses of certain uricosuric drugs are able to restore adequate phosphate excretion. Salicylates from many sources, including cosmetics, herbs, plant extracts and bioflavonoids, can block this treatment approach and must be carefully avoided. An Internet survey of 100 patients showed 91% improved using guaifenesin, a widely used, weakly uricosuric compound, originally derived from a tree bark, and the most effective therapeutic agent so far. Another component of Dr. St. Amand’s approach that is important in more than half his patients, is a low carbohydrate diet. A recent study shows how surges of adrenaline cause many of the symptoms and explains why standard glucose tolerance tests are not always very useful for diagnosis of carbohydrate intolerance (also known as “low blood sugar” or hypoglycemia). The effectiveness of a low carbohydrate diet in treating the symptoms and in losing weight (for those who need to) is also discussed.

Finally, the hypothesis that Environmental Medicine and Dr. St. Amand’s approach are interrelated and complementary is proposed and discussed. It is suggested that a combination of the two approaches will 1.) increase the speed and effectiveness of treatment in complicated patients, 2.) increase the level of health achieved by many patients, and 3.) lead to a better understanding of the complex interplay of mechanisms involved in fibromyalgia and related illnesses. It is suggested that the phosphate excretion problem proposed by Dr. St. Amand may be the genetic defect that makes some people more susceptible to chemical exposures and other stresses that are said to trigger fibromyalgia. It seems likely that individuals differ in the degree to which environmental factors vs. genetic factors dominate.

(Note: Dr. Jaffe reviewed the material presented here on the ELISA/ACT approach and Dr. St. Amand reviewed the information on guaifenesin and the low carbohydrate diet. However, neither endorses the use of the other’s method and the ideas on the relationship between the two approaches and combining them were developed by the author.)

Introducing CISRA: Support and Information for Support Groups.

What do People With Chronic Illnesses Have in Common?

1. Stress, both physical and psychological. It is now widely recognized that many chronic illnesses stress the body, impacting the immune, endocrine, gastrointestinal and nervous systems, in fact all the systems of the body. These effects may then spread. Nervous system problems may lead to diarrhea and malabsorption of nutrients. Pain, depression and anxiety may lead to poor sleep. Poor nutrition and sleep problems may weaken the immune system and make one susceptible to other illnesses or a worsening of the primary illness, unless preventative steps are taken.

2. Medications and their side effects. Much of current medical treatment relies on medications with side effects, because doctors must focus on treating the symptoms of the illness rather than its causes. Many people with very diverse chronic illnesses may use the same symptomatic drugs and suffer the same side effects. For instance, nonsteroidal anti-inflammatory drugs (NSAIDS) are frequently used for pain and may cause ulcers or gastrointestinal bleeding and an increase in intestinal permeability and food sensitivity. High doses of the steroids cortisone and prednisone are used to suppress pain and inflammation, and their use can lead to complications in diverse illnesses. Iatrogenic illness (illness resulting from medical treatment) is a growing problem.

3. The realization of the need for more research. Increased government and private investment in medical research and prevention could save billions in costs of health care and lost work, not to mention the alleviation of tremendous suffering for the millions of chronically ill and disabled people.

4. A desire to support the body’s natural healing mechanisms. Many of the chronically ill already know the importance of optimal nutrition, relaxation, coping skills and supportive health care and social environments, however more research and education in this area is clearly needed.

5. The need to strengthen support groups. The fact that support groups usually are dependent upon ill people and their families, who are likely to be already overworked and struggling financially, means that they are often quite limited in what they can do. Many can barely keep going. Those dealing with the worst and rarest illnesses are often in the most difficult situation.

6. A complex and stressful medical system. Patients often have to make many stressful visits to numerous specialists who have a hard time seeing the big picture for their individual case. Doctors must struggle to keep up with all the advances in their own field, not to mention advances in other fields, making it difficult sometimes for patients to obtain the most beneficial treatments.

What Does CISRA Plan to Do?

It is a pretty big job, but we plan to start with a newsletter and a list of support groups and see where creative evolution, the Internet, and synergy will take us. The following are some of the goals we hope to accomplish.

1. Create a newsletter for newsletters. Using the branching of a tree, (i.e., a multi-leveled or hierarchical structure) as a model, we want to use all the existing support groups as branches and provide another resource for them to reach people with information that would not be available to them otherwise. We will seek to provide a link between support groups who can include our information either as is or with added materials based on the background articles we will send them. If the group does not have the energy or resources for a newsletter at present, they can just attach announcements, or a few additional paragraphs and use our information as the starting point. One doesn’t need a big group with speakers and frequent newsletters; sometimes just a little support by phone or occasional newsletter makes a tremendous difference. Individual patients, researchers and health professionals may also join and serve as liaisons who can help facilitate information flow between CISRA and professional and patient organizations.

2. Help overcome the barriers of specialization. Since doctors are so busy and specialization is so prevalent, sometimes the patient is almost the only thing all the specialists have in common. Patients doing their own research on the Internet and by other means are often quicker to know about advances in different branches of medicine than the doctors they go to. The best doctors try to keep up and are not too proud to learn from their patients. At a more system-wide level, we hope to investigate means by which doctors can more effectively keep up with rapidly advancing research, especially in areas like nutrition, immune system function, and psychoneuroimmunology, in which they were unlikely to be trained when they were in medical school.

3. Identify doctors close to the cutting edge of research. By sharing lists of those doctors and HMOs who are best at keeping up with the research and state-of-the-art treatment, we can encourage doctors to better meet patient needs. By being a patient group, we can avoid the bias of vested interests in any particular types of treatments. Our only criteria is that the treatment helps patients, with special emphasis on ways that promote long-term healing and minimize side effects.

4. Speed up the widespread acceptance of new and proven therapies. Unfortunately, even the most scientifically proven new advances often take years to become universal treatment standards. For example, the bacterial cause of most ulcers, Helicobacter pylori, required a long and tortuous journey to acceptance.

5. Increase patient input on research areas and restore balance. Drug company and high tech advances are the biggest money makers for investors in biomedical companies and thus the research money spent is enormous. These advances are important, but it is doubtful that there is an adequate supply of research in areas that are less profitable. The input and desires of the population of educated patients/ taxpayers/voters is needed to supply more balance in research expenditures.

6. Provide additional sources of insight. Dr. Tom Ferguson of the Harvard Medical School’s Center for Clinical Computing said in a National Public Radio report (July 3, 1996) that case reports are the beginning of information and predicted that some very interesting hypotheses entering orthodox medical thinking would have their origins in patient reports on the Internet. In the same way, case reports shared among patients, doctors and support groups involved with CISRA could have relevance. In addition, surveys of support group members are a way of providing initial data that can point to areas that require future research.

7. Encourage doctor -patient communication. We can encourage doctors, professional associations or even HMOs who are willing to be open-minded to subscribe to the newsletter and to become more aware of and responsive to patient’s interests and needs.

8. Encourage information sharing. Encourage CISRA members and member organizations to share medical information and treatment ideas that have the potential to help people with diverse illnesses. Communication among open-minded people with different perspectives and the highest level of incentive for change and medical progress may well lead to unexpected medical advances.

9. Internet communication. Make CISRA’s Synergy Health Newsletter available on the Internet, with links to many different web sites.

10. Provide a list of support groups and organizations in our network. By linking up all these groups with similar interests, the power of patients in the medical system should be greatly increased.

11. Inspire patients to become involved. Educate and inspire patients and their families to get involved and to stay involved, even when they get well. We hope to show ways in which the experience of illness can eventually lead to a more meaningful and fulfilling life, especially when we all work together.

12. Provide information on important but neglected areas of research. We plan to focus on areas with a.) promise, but a tendency to be neglected , b.) the most potential benefit, c.) the most immediate availability, d.) the most scientific support, and, e) benefit shown for one illness that may have potential benefits in another illness. Where studies conflict, we will attempt to discover the reasons for the discrepancy. Experts and innovators in various fields will be consulted. The Editor’s experience in systems research, complexity theory, biology, and statistics will also aid in this.

A Broad Perspective That is Both Open-Minded and Critical.

Although there are many sources of health information in the form of books, newsletters and through various organizations, it is often hard to be sure if there are not some vested interests that determine the viewpoint of the articles. To avoid this problem, we will rely on the fact that those who are ill, often have the least bias and the most incentive to find the truth without the politics, research and career agendas, and the desire to sell products and services. CISRA will endeavor to achieve the closest possible linkage with patients and their interests and will endeavor to try to reconcile seemingly opposing points of view to achieve a synthesis, whenever possible, which will put different approaches in perspective. We plan to approach new and revolutionary ideas critically, but in an open-minded manner, keeping in mind that many of medicine’s most significant advances were suppressed and even ridiculed for years by the medical establishment before they were finally accepted.

Fibromyalgia Project. One of the first projects of CISRA will involve attempting to determine how fibromyalgia may play a role in distinct illnesses who’s specialists rarely seem to interact across disciplines. The case of vulvar pain or vulvodynia provides an example of the potential benefits. Dr. St. Amand (see below) found that his fibromyalgia patients had their vulvodynia disappear with guaifenesin treatment. Word of Dr. St. Amand’s guaifenesin therapy reached the patient group, the Vulvar Pain Foundation (Graham, NC, 910/226-0704) and some of the doctors who were involved in treating this patient group. Dr. St. Amand was invited to VPF sponsored conferences and met with doctors and patients. He found that virtually all the vulvar pain patients he examined actually have fibromyalgia. Apparently, their vulvar pain, was simply the most noticeable symptom. In an analogous manner, fibromyalgia has been found to be the actual cause of pain in some cases of what was presumed to be dental pathology that would necessitate surgery. Also, as we discuss further later in this issue, other investigators have found that immune sensitivities are an important feature of fibromyalgia. As a part of this project, a better understanding of the role of immune sensitivities in fibromyalgia will be sought, while attempting to increase awareness of their role in varied illnesses. The purpose of this CISRA project will be to use patient and doctor Synergy liaisons to enhance and increase this type of interaction and cross-fertilization across medical specialties and different types of support groups.

Editorial Note (2005): Many of the above are not yet accomplished, but provide a set of goals and ideals for CISRA’s future.

Written by synergyhn

September 30, 1997 at 4:55 am

%d bloggers like this: