Web-Based Programs Offer Promise For Increasing Exercise and Addressing Fatigue

Ninety percent of people with MS describe fatigue as one of the worst symptoms (I am one of them). Fatigue is surely the most common MS symptom, and it’s one that can really limit our functionality. I found out during a presentation at the 2015 meeting of the European Committee of Treatment and Research (ECTRIMS) that fatigue is also the most common reason for early retirement among people with MS.

Unfortunately, drugs have been disappointing in helping us manage or improve fatigue. The best results have come out of studies focusing on behavioral and educational interventions, many employing cognitive behavioral therapy (CBT).

CBT has been defined as “a short-term, goal-oriented psychotherapy treatment that takes a hands-on, practical approach to problem-solving, with the goal of changing patterns of thinking or behavior that are behind people's difficulties.” However, like any other therapy, it is expensive and time-intensive and hard to work into daily schedules.

In addition, while there have been results from some of these personal, face-to-face fatigue interventions or prescribed exercise programs, both of these interventions typically require a person to leave their house at a certain time and go to a facility for therapy. Many people trying to cope with MS fatigue do not feel like doing that on a regular basis, while physical limitations can also be a barrier.

A German group of researchers wanted to see if they could bring the intervention to where people were – home – through an online platform. They developed a program based on CBT that was combined with telephone support. The program was fully automated and was interactive, taking people through 8 modules over the 12-week course.  

The content of modules included:

  • Information about fatigue
  • Cognitive behavioral therapy knowledge
  • Activity and rest
  • Sleep
  • Functional cognition
  • Attention
  • Relaxation

The researchers recruited 275 people through the website of the German MS society. Half of the people were randomly assigned to participate in the intervention for 3 months and half were put on a waiting list (to act as the control group).

This is what they found at the 3-month follow-up:

  • The program significantly reduced fatigue measured by Chalder Fatigue Scale (a measure of fatigue based on a self-administered questionnaire).
  • Participants also saw greater improvements in anxiety and self-reported cognitive dysfunction.
  • However, no effects were seen on depression or coping measures.

The data also showed that people receiving the intervention maintained a higher activity level at the 3 and 6 months follow-up point.

Another potentially related study looked at providing an exercise intervention through the Internet to improve physical activity levels of people with MS. The intervention began with a face-to-face meeting in order to introduce people to the program and personalize the initial exercises. This was followed by two sessions per week of eight at-home exercises with elastic bands and one session of aerobic exercise per week.

On an ongoing basis, the therapist would prescribe specific exercises through the Internet. The participant would confirm that they did the exercise, as well as rank the difficulty of the exercise. The computer would automatically adjust the difficulty of the next prescribed exercise so that it was appropriate (not too hard and not too easy).

This is what the data showed:

  • Participants completed 3,500 sessions and 21,000 exercises.
  • People from a wide geographic area participated in the program.
  • Participants demonstrated a significant increase in strength and lung function.
  • Disappointingly, there was no effect on quality of life or fatigue.
  • The number of sessions completed decreased after two months. After 3 months, 15% of participants had dropped out, rising to 30% dropping out by 6 months.

Bottom Line: The Internet is emerging as a practical place in day-to-day management of certain MS symptoms, or to help us do things to stay physically active. Online programs can be more intensive than face-to-face interventions because they can be done in a person’s home, many people can be reached at once, and they can be standardized. It seems that a crucial part of a successful program would be a way for people with MS to interact with those running the program to get information and support, as well as opportunities to interact with other participants in chat rooms. The researchers mentioned that they are working on this aspect, and also trying to make the programs more fun and motivating. I think (I hope) that we will see more online wellness programs in the future, which could offer the opportunity to help us feel better on our own schedule. 

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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.