Not too long ago I was sent the following link: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=269
If you’re not a link kind of person, here’s the text of the link:
Aug 19, 2008
Exploring Why Physical Activity is Reduced in People with MS: Society-funded Investigators Seek Participants
Investigators funded by the National MS Society are seeking people with MS to participate in a study exploring whether the frequency and severity of MS-related symptoms influence physical activity. Robert W. Motl, PhD (University of Illinois at Urbana-Champaign) and colleagues are tracking changes in activity over three years in 250 individuals with relapsing-remitting MS, a course of MS characterized by flare-ups followed by complete or partial remissions. This study could improve our knowledge of the factors that reduce physical activity in people with MS, and help design programs to increase it.
Physical activity is being measured by an accelerometer, a device worn around the waist that measures movements throughout the day. Participants will complete questionnaires and wear the accelerometer for 7 days, and then will repeat this process every six months for three years. The results are being correlated with clinical measures of disease activity and patient reports of symptoms.
All materials will be delivered and returned pre-paid through the United States Postal Service. Participants in this study will be paid $120.
Anyone interested in more information about this study should contact Elise McAuley via email at email@example.com, or via telephone, toll-free, at (888) 796-7966.
The following is my reply to their “study”:
YOU REALLY MUST BE JOKING…
Allow me to express my disappointment in the study I’ve just read about regarding physical activity in MS patients.
I find it very difficult to believe that so little is known about MS that a multi-million dollar study is required to find out if it affects sufferers physically. Allow me to save you some time and money. YES.
Are we really so far behind that we essentially have to start at the very beginning?
In the two years since my diagnosis, I have been reduced to using a walker or a scooter to get around; on the rare occasions when I am able to amble down my hallway unassisted, my girlfriend refers to me as “Lurch”… and it’s not because I have a great baritone.
Any time I have to stretch to reach something, my muscles all fire at once sending my arms off in wild, unintended directions. If I want to move my feet while sitting in a chair, any “over-stimulation” of the muscles (by way of a signal from my porous brain) sends me into a spasm that has twice literally thrown me from my chair.
I know my experiences aren’t unique to PWMS, and the disease has been around for a good long time – officially recognized for well over a century, and who knows for how long before that (it’s been postulated that the apostle Paul had MS – worth a google if you have the time).
And $120 for 3 years worth of dealing with a belt – even if it’s only a week at a time every 6 months – is ridiculous.
If there’s no way to use information already previously gathered to come to a conclusion, I see no reason to hope for any significant advancements in the fight for a cure over the next 10-20 years. At least this study has given me the freedom from waiting for things to change for me, and force me to accept things as they are and move on… and for that I thank you.
If this is the state of studies regarding MS, you won’t have me as a test subject… or a financial contributor. All the best to your research.
In response, I got a form email reply thanking me for my interest in the study. *sigh*