How to Manage Fatigue with Multiple Sclerosis
Fatigue is unfortunately intertwined with multiple sclerosis, and can be one of its most debilitating effects. Because of its harmfulness, many doctors and researchers have put together ways to manage fatigue to an extent where it hopefully will not be a deterrent from engaging in meaningful activities.
Studying fatigue specific to MS
Fatigue has a very sizeable impact on the quality of life, especially for those with MS. That's why researchers from Cape Western Reserve University, Dalhousie University, and Queen's University received almost $4.9 million from the Patient-Centered Outcomes Research Unit to study fatigue. The goal of the study was to compare the levels of effectiveness of face to face, teleconference, and online adaptations of a non-pharmaceutical program to lesson fatigue.
PCORI is a non-profit, independent organization that the United States Congress authorized in 2010. The purpose of the research unit is to fund innovative research that has the potential to assist patients, their caregivers, and clinicians by way of information that is centered in evidence. With this information, those involved in healthcare are much better able to make informed decisions.
The funding from PCORI was a part of five awards recently made available targeted towards assisting patients with MS to choose the best healthcare options for their specific case. Joe Selby, who is the Executive Director of PCORI, states, "this study was selected for PCORI funding for its potential to fill an important gap in our understanding of MS treatment. It will provide useful information to help patients and their caregivers weigh the effectiveness of their care options. We look forward to following the study's progress and working with this talented team of researchers to share the results."
Tanya Packer is a professor with the Faculty of Health who has written the program protocol and is going to be the lead investigator for the study's online component. She explains, "this is a very large project that will test the effectiveness of three different ways to deliver an occupational therapy fatigue self-management intervention for people with MS. The study will be based on prior research, but will test, for the first time, whether all formats are equally effective when tested in the context of everyday clinical practice."
Even though 2.3 million people across the world have MS, no drugs for MS fatigue are easily accessible, as none have been approved by the U.S. Food and Drug Administration. Even prescribed medications are not shown to display dramatic effects, resulting in a need for further research.
The study is specifically set out to analyze the level of effectiveness of courses that prepare patients with self-management techniques. The course, Managing Fatigue, teaches participants to re-evaluate priorities, take rest breaks, re-organize space, and try new things when "banking" their energy. They are also taught to "spend" limited energy on what is considered meaningful to them. The course has proven to be extremely effective for many; however, if patients are not able to physically attend meetings, it is inaccessible. Therefore, there is a desire to expand it via technological platforms.
In the study to analyze whether or not the course will have an impact via remote measures, 610 participants with MS will be enrolled, each partaking in one of the three available modes of delivering the course. As a result, the modes will be compared to test effectiveness. The goal of the study is to gain data about how the treatments can best be personalized for patients. Dr. Packer explains, "if all methods of delivering the course are equally effective, it will mean that people in rural areas who may have mobility problems, or no access to transportation, will be able to participate in the program. It will also be the evidence needed for health services and insurance companies to invest in new technologies that increase access to one of the only interventions effective in reducing MS fatigue."
Dr. Packer continues, "this program was born out of my work with clients who were being told their fatigue was not real or that it was 'in their heads.' Their distress and frustration were the catalyst. Now, with over twenty years of work by researchers and practitioners internationally, this award goes beyond effectiveness to access and personalized care."
Read on to learn how to manage MS-related fatigue.