Be Active in Finding Relief: Participate in Chronic Fatigue Syndrome & Fibromyalgia Research
August 28, 2002
By John W. Addington
The debilitating nature of both fibromyalgia (FM) and chronic fatigue syndrome (CFS) can make you feel like a powerless victim. However, much can be done to counter these feelings, to help you regain control. One way to empower yourself and benefit others is to actively participate in FM or CFS clinical research.
Extensive study into CFS and FM is being conducted around the world by dedicated researchers. This work may be government funded, or sponsored by a drug company or individual doctors. Investigation is being done as to possible causes, treatments and even cures for these ailments. Essential to the success of this work, is participation by those afflicted with either CFS or FM.
What Are The Benefits of Participation?
There are many benefits from participation in CFS/FM research. Generally, such volunteering advances the understanding of these disorders. A primary part of understanding these disorders is knowing what causes them. That’s why some CFS and FM studies merely involve testing of patients' physical or neurological functioning. If you joined such trials, you may be asked to perform various physical exercises or mental tests according to your limitations, researchers being careful not to aggravate your symptoms.
What would be the benefit of volunteering for studies that did not directly involve treatment? Helping doctors find the cause of CFS or FM obviously will help lead to research that can more directly study treatments or cures. Therefore, contributing to the growing body of knowledge that eventually will lead to finding the cause of these ailments can be very satisfying.
Dr. Benjamin Natelson from the New Jersey Chronic Fatigue Syndrome & Fibromyalgia Center explains it this way, "Our goal is to find out what causes CFS. In order to do so, we come up with research ideas. However ideas are just beliefs and we need to determine if the ideas are true or not. To do this, we need to perform experiments in which we tease out the multiple possibilities of things that could cause CFS. Doing this requires our collecting information from both CFS patients as well as from people who do not have CFS (so-called control subjects). If we cannot enlist the help of CFS patients and their healthy friends, relatives and family, then we will never be able to come up with true scientific facts that explain CFS."
Besides research into the cause of CFS and FM, many current studies involve methods of managing symptoms. Experimental drugs known to be safe and with a strong potential for benefit may be used. Thus participants may gain from having access to potentially helpful medications long in advance of the public generally.
In other cases drugs approved for other conditions are used to see if they would also bring relief for those with CFS or FM. Or combinations of drugs already known to be of some value are tested at various dosages. Other non-drug therapies may be involved as well. Again, long before your treating doctor would know to use such, you may, in this manner, benefit from effective therapies.
Even contributing to research with "negative" results is necessary. For instance, a therapy studied may not relieve symptoms as was hoped. But without a study being done, this may not have been known. Now, doctors know they can avoid such therapy with their patients. Thus those that contribute to studies of this nature can still be glad they helped advance the knowledge of treatments most beneficial.
Dr. Niloo Afari, Associate Director of the Washington CFS Cooperative Research Center knows the value of patient participation in CFS studies. This CFS specialist comments that "whether in a clinical study designed to assess the safety or effectiveness of a device or new treatment, or as a healthy control subject being used as a standard for comparison, without willing individuals to volunteer their time to research studies, many advances (treatments, cures, etc.) would never be made."
Does it Cost to Participate?
Often in such studies the care and treatment is provided without charge. Some studies even provide financial compensation for your time, travel and inconvenience. Others involve costs they may be covered by your insurance. As these details vary from trial to trial, be sure and ask up front.
Are The Studies Safe?
Stringent protocols are followed to ensure studies are safe. If it’s a new drug that is being tested, you can be sure that much laboratory and animal testing has been done before it is being offered to you. Institutional Review Boards, Data Monitoring Committees and even FDA inspections also come into play to ensure participants are protected.
Additionally at all times participation is voluntary. To determine whether you feel comfortable with a particular trial you first need to read a general description of the study, usually provided on the Internet. If you agree to meet with study coordinators, they will explain and answer questions regarding what will be done. You will also be able sign written consent papers, which make clear all that is involved. Even after you have signed, however, you can feel free to back out at any time.
You should understand that there can be disadvantages or risks associated with any trial. At a minimum there may be inconvenience because of the time or travel required. There is the possibility of unpleasant medication side affects. Other tests may aggravate your symptoms. Such problems are temporary, but you will need to weigh the factors in light of your condition to determine whether you want to volunteer.
How Do You Find Appropriate Trials?
Until recently the standard way to learn of trials was through your treating physician. But not all doctors are able to keep up with ongoing research. Another more effective way to learn of trials is by contacting organizations that deal with your condition.
For those with CFS or FM several organizations track ongoing studies (see list below). Three organizations have been designated and funded by the U.S. government to study CFS in particular. These are led by Dr. Benjamin Natelson in New Jersey, Dr. Dedra Buchwald in Washington and Dr. Nancy Klimas in Miami. You can check the web sites for these research centers or contact them by phone.
Other web sites with trial listings are the CFIDS Association of America. Those with fibromyalgia can check with The American Fibromyalgia Association, or the National Fibromyalgia Partnership.
Web sites that attempt to track studies for numerous conditions, at times also list trials involving FM or CFS. A couple of such services are ClinicalTrials.gov and CenterWatch. Besides typing in fibromyalgia or "chronic fatigue syndrome" in the search features of those sites, be sure to search for related problems you suffer from. These could include headaches, insomnia, irritable bowel syndrome, pain, etc. Thus, if there's not a fibromyalgia study close by, you may still qualify for nearby trial specific to one of your more troubling symptoms. You can also sign up to be alerted when studies pertaining to your condition or symptoms may be initiated in your area in the future.
Dr. Afari further describes the benefits of CFS patients assisting with research. "Contributing to science primarily through participation in research studies benefits society at large and specifically others who suffer from the same illness. It is primarily through well-designed studies that scientists and physicians make advances in understanding and treating CFS and other illnesses which then translates into general clinical practice that benefits all patients." Participating in research is one way to empower yourself by enabling you to contribute to research that makes a difference.
CFS/FM TRIAL RESOURCES:
Chronic Fatigue Syndrome Cooperative Research Center,
University of Washington, Seattle.
Principal Investigator: Dedra Buchwald, M.D.
New Jersey Chronic Fatigue Syndrome & Fibromyalgia Center
University of Medicine and Dentistry in Newark, NJ,
Principal Investigator: Benjamin Natelson, M.D.,
(800) 248-8005; (973) 676-1000 x1414
Center for Multidisciplinary Studies of Chronic Fatigue Syndrome
University of Miami
Principal Investigator: Nancy Klimas, M.D.
(305) 325-7154; (305) 325-7136
CFIDS Association of American
The American Fibromyalgia Association
The Fibromyalgia and Chronic Myofascial Pain Institute
National Fibromyalgia Partnership
GENERAL INTERNET TRIAL DATABASES:
ClinicalTrials.gov: U.S. National Institutes of Health database
CenterWatch U.S. Trials
CenterWatch Non-U.S. Trials
Current Controlled Trials: multi-national database
National Research Register-U.K. Trials
The Health Exchange
What is a Clinical Trial?
All About Clinical Trials
Frequently Asked Questions About Clinical Trials
Taking Part in Research Studies: What Questions Should You Ask?
Understanding Clinical Trials from the Patient's Perspective
Many Patients Unaware of Clinical Trials
Why Participate in a Clinical Trial
What Reasons Do Patients Give For Participating or Not Participating in Clinical Trials?
Why Volunteer? Clinical Trials of Medical Treatments
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