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. 

Tags Research      2 Appreciate this
| Reply
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.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    23 Comments

  • Pat   Oct 9, 2015 11:52 AM
    Another MS "teaser"? We constantly hear about promising programs or drugs or other treatments but there never seems to be any good follow-up. It would be nice to be given the opportunity to find the web based programs or even just more info.
    Grumpy in NC!
  • Kaye Kramer Osborne   Oct 9, 2015 12:03 PM
    I am 67 years old . I have been diagnosed with MS for 32 years. I have the RR type MS. I do my PT everyday. I use to do the treadmill for 30 minutes. I am trying to get back but only been able to do 13 as of today. The muscle that runs downtime side of my legs has gotten very painful. I went and had steroid shots three days ago . I am still in pain . I can't tell if it is MS or Fibromyalgia. But at this rate I don't know what to do. I have trouble walking which I did have before but it is worse now. I just wonder what Dr. to see. My Neuro or my fibro or who. I am just disraught. Thank you for any advice.
  • Beth   Oct 9, 2015 1:29 PM
    Besides the pain, I agree the fatigue is the hardest. You can't make plans since you already know you'll have to cancel. It's so hard to live with MS.
  • Colleen   Oct 9, 2015 2:25 PM
    I would love to have the CBT course. When will this be available in US. Will NMSS support this program to have it available to all MS'ers? 11 yrs with RRMS :)
  • Elizabeth Winzig   Oct 9, 2015 3:29 PM
    I would like to be involved in participating in an exercising program that measures the activity. Are there any suggestions?
  • Carla Pinho   Oct 9, 2015 3:43 PM
    I have multiple sclerosis when began the day I'm able to all but with the passage of time I feel fatigue. I swim twice a week do one day of hidrobike
  • Maria   Oct 9, 2015 3:49 PM
    Has the study included evaluation with temperature variations, i.e. were they as active in extreme heat and cold.

    The University of Washington study, Take Charge of My MS chaired by Dawn Erde phd. addressed fatigue, pain and depression which for me decreased my fatigue, pain & depression tho I only focused on fatigue. But extreme temperatures are still less productive and all year long I am pain free enough not to take any pills for it, and depression is non-existent.

    The study had weekly telephone interventions for two months with behavior modification, relaxation techniques, goal setting and problem solving techniques.

    It was a whole person approach to evaluating cause and effect responses to the emotional aspect of living with ms as well as an honest assessment of physical abilities. (At least that is what I got from participating in the study.)

    Which in my opinion is success.
  • Avatar
    carrie-peer  Oct 9, 2015 6:32 PM
    I don't understand why more neurologists (many of whom acknowledge high Epstein-Barr viral levels in people with MS) don't treat with anti-viral drugs? Fatigue was a HUGE problem for me--EBV loads 10,000Xnormal--until 6 mo. treatment with Valcyte, a potent anti-viral, My fatigue was CURED and hasn't been an issue for the past 8 years!!
  • JoyP  Oct 9, 2015 6:38 PM
    There are quite a few studies showing yoga helps to reduce fatigue in people with MS.
  • Avatar
    oldhippie  Oct 10, 2015 9:04 AM
    Okay so another Doctor telling me that there a new program for Multiple Sclerosis, Well I was told two years ago that I am suffering with one kind or an other of Multiple Sclerosis but with no real help. I was in a vary serious auto accident in November 2012 and after every test known to man Ii had the first of many Neurologist in March 2013 tell me have Relapsing Remitting Multiple Sclerosis and left it with that, no further help or drugs. Roll the cloak forward to now October 2015 I am ordered by the court/ Law firm to go see this Doctor I don't know any thing about. So I go on the 1st of October and he turns out be a Neurologist Multiple Sclerosis Specialists, and after about an hour of him asking a lot question's and doing a full physical exam, he stops and asked me one more question, did you ever have any of these problems or symptoms before the auto accident, My answer has be no never. His reply was astounding he tells me that in his Professional opinion I do not and never have suffered with Multiple Sclerosis, I do seem to be suffering from a vary serious brain injury and I should seek other help in that field of Neurology. So yes there maybe a lot of new earth Shattering breakthroughs and programs but first you need to know what you are really dealing with and a Doctor who will look outside the box. As for me the MRI's did not show the brain injury and they never will as bleeding on the brain will not show up on an MRI and I have had five of them and never any of them lead the Neurologist in the right direction so have been living with this and boing all the wrong treatment's for what really in all reality is not the problem.
  • Robyn Ellis   Oct 10, 2015 5:13 PM
    I found a home business with Personal Development as its core product. The program has helped and continues to help me with my mindset everyday and the community within the business are uplifting and inspiring. Admittedly, I have a mild RRMS case. I go to yoga 4 times a week most weeks and am slowly adapting into lifestyle changes to support me. All brought about from what I surround myself with thanks to my business. There are things out there to help us live a better life with MS, I believe a lot has to do with the mindset, lifestyle and environment. Put it out to the universe!
  • Marilyn1  Oct 10, 2015 7:31 PM
    i would very much like to have access to online excersize programs. i belong to silver sneakers now. but they occasionally change schedule and i cannot go as often as i should. i have some equipment at home. just need good coach class incentive.
  • Jessie Snowdon   Oct 10, 2015 10:01 PM
    Hi, is it possible to have the reference for these studies shared please? Much appreciated.
  • JJSteiner   Oct 11, 2015 10:00 AM
    very informative.. I joined the Yankees and am going at least two times a week.. I do feel better for doing it and notice I do have more energy.
  • misskim44270  Oct 13, 2015 5:36 PM
    This information is very helpful. I really enjoyed reading it, most likely implementing it. Thank you so much!
  • Vicki Alexander   Oct 15, 2015 8:08 AM
    I would like to know if there is any thing for heavy sweating I sweat all the time I am in my early 50th's and I go to the gym 3 to 4 times a week. I know about the cool vest but they do not always work. I do have MS. Help
    Thanks
  • Stevie  Oct 15, 2015 10:48 AM
    Give Foundation Training a try! I am realizing benefits after only three weeks of doing these daily exercises. Google foundation training or try YouTube. I am realizing better balance better stamina and less fatigue. And my legs are working a little better!
  • Avatar
    samwhiteboston  Oct 21, 2015 1:51 PM
    For Vicki,
    I have friends who suffer from the heat and the sweating issues you mentioned. I ended up inventing a freezer-charged cooling necklace that is a nice looking alternative to the cooling vest. It cools the blood flowing up the neck to your brain and has provided incredible relief from the heat. I do hops this information is helpful to you. https://www.etsy.com/shop/CoolingNecklace
  • Susan   Oct 28, 2015 10:52 AM
    The second study indicated that there was no effect on QOL or fatigue but did demonstrate significant improvement in strength and lung function. I have a progressive form of MS and am expecting to start using a wheel chair in the next couple months as one of my tools. I think it's important to not discount the benefits that improved strength and lung function have on QOL and fatigue. I am focused on maintaining enough strength and mobility to be able to do self-transfers and take care of my personal needs when the time comes. As soon as I can't manage that for myself, there is no QOL. And let's not minimize the importance of adequate lung function in the disabled and being able to fight off and overcome infection. Again, this directly impacts QOL.

    My experience has been I feel better if I exercise and get physical activity, e.g., housework, gardening - just able to crawl around to pull weeds, etc. Even if it only has a psychological benefit, that is huge to having a positive QOL.
  • Thomas M. Pallan, M.D.   Oct 28, 2015 11:08 AM
    I was dx'd with RRMS at age 60 with an initial flare of inability to stand and ambulate as well as double vision. This came on very suddenly while at work, reading X-rays, not fatigued, overheated or any signs of infection.
    At my age, I assumed that I had a brain tumor or stroke! Never MS.
    I saw a neurologist immediately and based on neuro exam and MRI studies, dx'd me with RRMS.
    On further discussion I realized that I have had parestesias in my left arm with muscle twitches for about 10 years which I attributed to a C6-C7 injury from football when I was 17 years old, resulting in compression of spinal nerve root compression at that level. When it extended to my rt. arm and both legs, I self diagnosed as arthritic changes and just dealt with it.
    Not until that major flare, did I see a Neurologist and have the MRI. I have over 250 lesions in all areas of the brain, yet, I am perfectly functional, most of the time.
    The extreme fatigue is what limits me on occasion.
    Interesting how everyones symptoms depend on where the lesions are... different lesions, different symptoms and different clinical presentation.
    I have been on Tysabri for almost 4 years, with no major flares.. just persistant parestesias and fatigue.
    I feel the worst fatigue about the first 8 days after a Tysabri infusion.
    My feeling is that "For Me", tysabri and a anti inflammatory diet with anti oxidant supplementation has prevented any major Flare ups, or maybe, I am just lucky... we just don't know. I have read most research, and discussed it with multiple MS experts... a very strange disease, ? genetic, environmental, viral etiology... we just don't know!
    For me, stress, lack of sleep, overworking, heat and significant cold, and dehydration, all make my parestesias, muscle twitching and brain fog... short term memory loss, much worse.
    Comments?
    Tom
  • Ruth Luketic   Oct 30, 2015 4:40 AM
    The National Center for Health, Physical Activity and Disability has an on line exercise and nutrition program called "14 Weeks to a Healthier You." The NMSD endorses it. Go to www.nchpad.org , scroll down the page to click on the button. Answer a few questions about your self and you will get new exercises (videoes), nutrition tips, recipes, and more each week. It is free. It does not matter if you are active now or never started. The exercises are selected for you regardless if you can stand, need support or use a wheelchair. The website is interesting too.☺
  • wayne fenton   Nov 3, 2015 10:31 PM
    Are there any online exercise programs and if so please post links , specifically ones for the people who use a chair quite a bit and find it very difficult to get on the floor with no assistance or walking .
  • Tracy Nelson   Nov 5, 2015 1:59 PM
    ive been living with m.s. for 10 years im gonna be homeless soon , if i dont secure some housing soon. i live in minnesota. im in desperate need. can any one help me?