While researchers are forging ahead with great ideas in symptom management and rehabilitation, we also heard about the complexity of factors that affect an individual with multiple sclerosis (MS) that need to be kept in consideration when developing new projects and initiatives. Therefore, in the third and final blog series on the progressive MS Alliance meeting, I will be highlighting fatigue management, understanding how comorbidities impact MS, and the mood and resilience of people living with MS.
Fatigue Management: Dr. Marcia Finlayson (Queen’s University, Canada)
Nearly two-thirds of people with MS experience fatigue, which can negatively impact employment, quality of life, and ability to engage in a full range of daily activities. There are limited resources available to help people manage fatigue in MS. To target this symptom, Dr. Marcia Finlayson’s group developed MS INFoRM (Multiple Sclerosis: An Interactive Fatigue Management Resource), a self-directed resource that allows people with MS to take a personalized and active approach to learn about and manage their fatigue. The contents of MS INFoRm address the sources of fatigue, ways of monitoring fatigue, and strategies to reduce fatigue. This includes individualized training in problem-solving, prioritizing, and energy management. The next steps in Dr. Finlayson’s project are to broaden access to the intervention and develop and test new strategies and delivery options. Dr. Finlayson’s MS INFoRm study is supported by the MS Society of Canada and she is looking for participants diagnosed with MS. If interested, please visit the study website for additional details.
Comorbidities: Dr. Ruth Ann Marrie (University of Manitoba, Canada)
Co-existing health conditions, also called comorbidities, can affect thinking and memory in persons with multiple sclerosis (MS). Dr. Ruth Ann Marrie highlights the most common comorbidities in MS and the importance of studying them. Some of the most common comorbidities are depression, anxiety, hypertension, hyperlipidemia, heart disease, and diabetes. A comorbidity such as depression is associated with cognitive dysfunction whereas vascular comorbidities such as high blood pressure and diabetes may accelerate MS progression. Major priorities in this field include determining if interventions differ in comorbid conditions and evaluating mechanisms that impact comorbidities.
Mood and Resilience: Dr. Kevin Alschuler (University of Washington, United States)
There are many challenges faced by an individual diagnosed with MS. MS can make an individual feel a constant sense of loss and grief that can ultimately feel isolating. This is where the concept and principles associated with resilience, highlighted by Dr. Kevin Alschuler, come into play.
Resilience is the ability of an individual to bounce back when faced with major life stressors and is associated with the quality of life. It is difficult to define what it means for an individual diagnosed with MS to be resilient to the challenges they face. While some may feel that bouncing back from a low is considered being resilient, others may feel that resilience is living well in the face of challenges. Factors associated with facilitating resilience include social connections (family, friends, peer support), having meaning in life (family, hobbies), planning (routines, simplifying life), and physical wellness (exercise, stress reduction). On the other hand, barriers to resilience include negative thoughts and feelings, social barriers, and physical fatigue.
Dr. Alschuler concluded by highlighting a program developed by the U.S. MS Society, called Everyday Matters, as a way of promoting resilience in individuals with MS. This program teaches skills in positive psychology including goal setting, happiness habits, retraining cognitions, building social connections, removing barriers to action and gaining positive momentum. An individual that can overcome the psychological challenges to have a positive outlook is more apt to gain from the symptom management and rehabilitation strategies aimed at improving quality of life.
The 3rd Scientific Congress of the International Progressive MS Alliance was a great success! After all the presentations, the International Progressive MS Alliance will continue to develop initiatives in the three key priority areas: (1) understanding progression; (2) accelerating clinical trials; and (3) enhancing well-being. The congress meeting set the stage for establishing collaborations and sharing ideas so that research programs could be developed that would have the greatest impact on an individual diagnosed with progressive MS.
Have any questions about this fascinating meeting or the topics that were discussed? Leave a comment below!