Post-Polio Health (ISSN 1066-5331)
Vol. 18, No. 3, Summer 2002
Read selected articles from this issue ...
Fatigue Research: Two Protocol Options
A Guide for Exploring Polio Memories
Linda L. Bieniek, CEAP, La Grange, Illinois, and Karen Kennedy, MSW, RSW, Toronto, Canada
How Our Minds Adapt: Understanding the Effects of Experiencing Trauma
Living with Pain
Penny Cowan, Executive Director, American Chronic Pain Association
Medicare Savings Programs ... You May Qualify
Certification of Poliomyelitis Eradication - European Region, June 2002
Poliomyelitis - Madagascar, 2002
Readers Write: Swallowing, Speech Enhancer, Healing Polio Memories, Ambu bag, Swimming
On the Internet ...
Joan L. Headley, Executive Director, Post-Polio Health International (firstname.lastname@example.org)
This issue includes another article related to the memories of having had polio, specifically the benefits of therapy. The inclusion of this article does not imply that all polio survivors need therapy, just as an article about anesthesia does not imply that anesthesia should be avoided. (See Editor's Comments, Polio Network News, Vol. 18, No. 2).
Two research studies are briefly described in the front-page article. Be aware, when you call, that there are "inclusion criteria" which you may not meet, and that there may be other requests made of you during the course of the research – none without your permission, of course.
Readers Write offers some personal ideas as to "What Works" for polio survivors. You are invited to send a description of your specific solution to a problem for future publication and/or to be added to "What Works" at our website.
Our site lists books about the polio experience over the decades. Younger physicians have expressed an interest in the earlier treatments survivors received, and it is information that should be recorded from polio survivors who have not written or cannot write a book. We will be placing online individual stories about the early polio experience (not the late effects of polio). You may choose to send us your story, making sure that you include the year and where you lived, because these two factors certainly influenced the treatment you received. Please send your story via email to email@example.com with "My story" in the memo line, or mail it to our Lindell Boulevard address.
International Polio Network has just published a new brochure, with three sections, entitled "Information abou the late effects of polio for polio survivors, for families and friends, and for health professionals." The informational piece will be translated into four other languages that will be placed online. To receive 1-3 copies in English, please send a self-addressed #10 envelope with 41¢ postage in US; 83¢ outside US [postage updates 2007}. (The brochure is English, Chinese, Farsi, French, German, Italian, Japanese and Spanish).
Fatigue Research: Two Protocol Options
Modafinil Option: William Campbell, MD, Walter Reed Army Medical Center (WRAMC), Washington, DC, announced new pharmacological fatigue research at the May conference – "Post-Polio Syndrome: Improving Quality of Life with Teamwork" – in Johnstown, Pennsylvania.
Fatigue is a prominent and common symptom of post-polio syndrome, and there is no satisfactory therapy. Modafinil, a drug approved by the Food and Drug Administration (FDA) for use in narcolepsy, will be used in this study. Modafinil, however, has not been approved for use for fatigue associated with post-polio syndrome.
The purpose of the study is to see if modafinil will decrease fatigue. The study will compare two different doses of modafinil and placebo ("sugar pill") to see what effects they may have on fatigue. Patients will be randomized, chosen by chance, to take either modafinil or placebo for the first six weeks. There will then be two weeks in which no study drugs are taken ("washout phase"). For the last six weeks each patient will "cross over." The patients who took placebo for the first six weeks will take modafinil for the last six weeks and those that took modafinil for the first six weeks will take placebo for the last six weeks. The study is "double blind," which means that neither the patient nor the doctor will know whether modafinil or placebo is being taken.
Modafinil, or Provigil, has been tried in treating fatigue from multiple sclerosis,1 Parkinson's disease,2 and sleep apnea.3 Modafinil is classified as an analeptic drug and its precise mechanism of action is unknown. It is a nonamphetamine drug that enhances wakefulness and vigilance. Modafinil is described as being "well-tolerated, with few adverse reactions." Reported side effects include headaches, and less often, nausea, infection, nervousness, anxiety and insomnia.
Polio survivors in the States who have served in the military may be eligible for the modafinil study being conducted at WRAMC. Marinos Dalakas, MD, National Institutes of Health, Bethesda, Maryland, and Lauro Halstead, MD, National Rehabilitation Hospital, Washington, DC, are conducting the study for civilians in the States. For more details, call the Post-Polio Syndrome Program information number – 301-295-0231.
In his presentation, Dr. Campbell noted that there are many causes of fatigue, such as sleep disturbances, depression, chronic debilitation, fibromyalgia and abnormalities of muscle fibers, neurons, the immune system, etc. Consequently, finding a solution for fatigue is not easy and the modafinil study is examining just one option.
Non-Drug Option: David Riley, MD, of the Integrative Medicine Institute of Santa Fe, New Mexico, also presented an overview of a non-drug option for fatigue research in Johnstown. The protocol involves nonfatiguing intermittent isometric exercises and stress management techiques. Preliminary observations indicate that fatigue, pain and weakness are reduced. Riley notes that the more an individual can strengthen their internal reserves, the more likely they are to activate their own self-healing process.4
Barbara J. Duryea, Project Coordinator of the Post-Polio Program at Conemaugh Health System, Johnstown, Pennsylvania, reports that one goal of the research is to provide an option that avoids potential drug side effects and interactions. William DeMayo, MD, of the Conemaugh Health System is working in conjunction with Riley and Duryea to develop and evaluate a lifestyle intervention for fatigue.
In an effort to offer the protocol to polio survivors and health professionals in diverse geographic locations, the Conemaugh Health System has developed a 30-minute instruction video. All polio survivors in the States are eligible to apply for this study and can learn about the protocol and the tape by calling 800-587-5875 or Duryea at 814-534-5741.
Post-Polio Syndrome Program (PPSP) The Uniformed Services University of the Health Services and the Henry M. Jackson Foundation are collaborating in medical research efforts with WRAMC, National Institutes of Health, National Rehabilitation Hospital and Conemaugh Health System focusing on post-polio syndrome. The Post-Polio Syndrome Program is funded by the Department of Defense.
1. Rommohan, K.W. (2000). Wake-promoting agent shows benefit in MS-related fatigue. International Journal of MS Care (Supplement), 9(3).
2. Nieves, A.V., & Lang, A.E. (2002). Treatment of excessive daytime sleepiness in patients with Parkinson's disease with modafinil. Clin Neuropharmacol, Mar-Apr;25(2):111-4.
3. Arnulf, I., Homeyer, P., Garma, L., Whitelaw, W.A., & Derenne, J.P. (1997). Modafinil in obstructive sleep apnea-hypopnea syndrome: A pilot study in 6 patients. Respiration, 64(2):159-161.
4. Riley, D. (2001). Interview, research and patient care: Integrating the science and art of medicine. Alternative Therapies, 7(3).