The American Fibromyalgia Syndrome Association, Inc.

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AFSA is an all volunteer nonprofit organization dedicated to funding research that investigates the causes and treatments for fibromyalgia syndrome.

A 501(c)3 Nonprofit Charitable Organization.

January 2002 AFSA Update
Volume 8, Issue 2

Download the full January 2002 AFSA Update as a PDF

Life's Uncertainties Abound, but NOT the Need for FMS Research

Unrest and turmoil exist around the world. Yet, the need for biomedical research on common conditions, such as FMS, permeates the boundaries of countries and cultures. FMS is everywhere you turn and the only way to minimize its path of destruction is through stepping up research on the disease. This is AFSA’s mission, and it is due to your generous donations that our research funding goals can be met. Each year brings with it new challenges, and each year we depend upon your help.

Your FMS Legacy

Ordinarily, a legacy is something that you are proud to leave behind for the younger members of your family and the next generation that is yet to be born. But there is nothing to rejoice about in the case of FMS genetic predisposition. The situation doesn’t have to be so grim. Mold your legacy into a person of action, one who changes the direction of FMS research. The genetic study described is just a start. AFSA plans to build upon this project of generating replenishable DNA by getting genetic-minded researchers to submit grant proposals that will lead the way to a better understanding of FMS as well as more effective treatments. This strategy is only a segment of our future funding plan. It will cost money, but with millions of Americans fully understanding the detrimental impact of FMS, this task is doable. Become a part of the plan for the future ... and that of generations to come. Contribute to AFSA and change the face of your FMS legacy today.

Cytokine Abnormalities Official! AFSA-Funded Study Appears in Rheumatology

The July 2001 issue of Rheumatology, featured an AFSA-funded project by UCLA professor Daniel Wallace, M.D., and his coworkers titled: “Cytokines play an aetiopathogenetic role in fibromyalgia - a hypothesis and pilot study.” The report not only showed that cytokine chemical abnormalities were substantial, but it also provided a basis for how FMS may progress over time. In addition, the study lays the groundwork and justification for investigating the use of two classes of novel pain relievers; one of which has just been approved by the FDA for prescription sale.

Daniel Wallace, M.D.

Cytokines are produced by the immune system and can cause many—if not all—of the symptoms of FMS. Wallace looked for cytokine abnormalities in FMS patients, and he added to the scientific intrigue by subdividing the FMS patients into “early stage” (symptoms for less than two years) and “late stage” (symptoms for greater than two years). Why evaluate the two groups separately? Wallace cites studies indicating that when FMS is diagnosed and treated in the early stage, remission of symptoms is likely to occur. But, once the symptoms have persisted for over two years, remissions are rare. So the study intent was not just to look for cytokine abnormalities, but to also investigate a plausible basis for why remissions rarely occur once FMS has persisted for a number of years (i.e., the typical patient).

Before addressing Wallace’s major findings, it should be noted that cytokines are not easy substances to analyze. They are released by cells throughout the body and rapidly disappear into the blood circulation. To overcome this obstacle, Wallace not only looked at cytokines and their receptors in the serum, but he assayed for the ability of the patient’s blood cells to produce cytokines when stimulated by such substances as LPS, which can resemble a bacterial invasion. Naturally, a control group of healthy people was also included in the study for comparison.

Serum levels of Interleukin-1 receptor antibody (IL-1Ra) were significantly higher in both patient groups compared to controls. In other words, the level of IL-1Ra did not appear to be influenced by the duration of FMS symptoms. Plasma levels of Interleukin-8 (IL-8) were three times higher in patients (almost predominantly due to those in the late stage of FMS). Interleukin-6 (IL-6) levels were not elevated in the sera of either FMS group, but when stimulated, IL-6 was produced in substantially higher quantities in the late stage patients, compared to those with early stage FMS and the controls. The stimulated production of IL-1Ra was also higher in the late stage group.

In a nutshell, there are significant changes in cytokine production even in the early stage of FMS, but this production generally increases as the duration of symptoms progresses. This latter finding could explain why symptoms tend to worsen with time and why therapies are often less effective (and remissions rare) after several years of persistent symptoms.

Cytokine interactions with the body’s pain, hormonal and stress response mechanisms are complex. The diagram below helps explain the relationships along with the study findings. Wallace indicates in his report that over time, the level of response to stressors may increase the production of IL-6, but the protective dampening mechanisms provided by IL-1Ra may be exhausted or overwhelmed. Fortunately, a drug that acts like IL-1Ra has just been FDA approved, with many more cytokine-altering drugs soon to be released. There is hope that these abnormalities and the symptoms that they produce can be minimized in the near future.

Cytokine Diagram

Marathon Fundraiser

Doug Pacht’s best friend’s mother, Claire Cohen, suffered miserably with FMS and died of causes unrelated to FMS a year ago. The fact that Doug knew a person with FMS is not at all unusual. FMS is a highly prevalent condition; roughly 3-5% of the population has it. The novelty of Doug’s story is that he went through a tremendous amount of effort to help people with FMS, even though he did not have the condition himself. After Claire passed away, Doug sought out possible ways to sponsor research in FMS.

A resident of Florida and an avid runner, Doug entered himself into the New York City marathon race that occurred last November. Before the race, he did his homework to find out which charitable organization was most active in funding research on FMS ... that’s when he came across the AFSA Web site. He contacted AFSA about his plan to solicit sponsorships for running the marathon race in Claire’s honor and donate all the money to AFSA on her behalf. After all the pledges were made (totaling $955 due to his wonderful fund-raising efforts), Doug still had to run 26 miles for people with FMS and collect the money to mail in to AFSA.

Doug’s enormous effort, made on behalf of FMS patients everywhere, is proof that there are people who genuinely care about your well-being!

22nd Project Funded - In Memory of Laura Skalla

  • EBV Transformation for Genetic Studies on FMS

Visit our Projects Funded section for a detailed description.

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The American Fibromyalgia Syndrome Association, Inc. (AFSA)
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