My participation in the IU medical school study.

Discussion in 'Fibromyalgia Main Forum' started by gapsych, May 8, 2009.

  1. gapsych

    gapsych New Member

    Basically, I did not make it and this experience brought up a lot of questions.

    The study, which is in Indianapolis IU Med. School is about exercise. You go to the IU Med. School three times, the beginning, middle and end, of the study and the rest is done by phone. During the visits you get blood tests and go through the same exercise routine to chart your progress.

    I was planning on staying the night before with my dad who lives a little over half way from my place to Indy and then only have 40 minutes to get there the next day. The first time I made it to my dad's place but the next day, I was in so much pain, I had to cancel. It was raining heavily the whole day. I called the person who does the scheduling,and she mentioned that seven out of nine appointments for the study were canceled that day because people could not make it to the hospital.

    She was very understanding, said that spring can be a rough time for many of us as the weather changes, barometric pressure, etc. So I thought I would reschedule with the plan of staying at my dad's two nights. However,the second time I did not even make it to my dad's place.

    I called and let them know that realistically, I did not think it was doable for me to participate at this time. They left it open if I wanted to try again.

    I was so proud of myself. I did not feel guilty about not being able to make. It was out of my control. I tried but it did not work out. I was/am disappointed that I was not able to participate in a study that might help people with our DD. But to not feel guilty, is real progress for me. (Yea, ga!!!!). But that is not the main reason I am posting.

    How in the heck, do they get enough people to participate in studies, when people are most likely not going to be able to participate. Wouldn't the people who participate be in better health. How does this skew the results?

    It seems like there should be some solution like the study coming to you. But that might mess up the data.

    I don't know if there is a solution but am interested in other people's input if you have participated in studies, have a research background, or some thoughts on this subject.

  2. denis321

    denis321 New Member

    good scientists/ researchers look at the drop-outs (people who couldn't make it to a study or couldn't complete a study) as the reason WHY they dropped out is important as well.

    Most major medical journals now REQUIRE disclosure of drop-out rate for an article to be published.

    It also says something about how applicable (or not) the results of a study will be.

    During the recent CDC research plan public input session, speakers did talk about how homebound/ bedbound people (the most severely ill) might be excluded from clinic-based trials. I.e. these folks can't go to a clinic regularly for studies. There are and have been a few CFS researchers who make the effort to have staff visit people at home or contact them through phone.

    Good on you for trying to participate in a trial!

    A book that might be of interest: "Lies, Damned Lies, and Science" which is written by a scientist about the nature of research for a general audience.
    [This Message was Edited on 05/08/2009]
  3. gapsych

    gapsych New Member

    You are right. I have a background in statistics and experimental design. How could I forget that??? No wonder it was nagging at me.

    As I just told someone, this fibrofog makes each day a new experience. Sometimes every hour!!


  4. jasminetee

    jasminetee Member

    Thank you for trying to get into the study.

    When my CFS was mild in the late 80's and 90's I could exercise all I wanted without ill after-effects. Now I can't do anything at all without paying for it hugely but I'm also always sick and in intractable pain now.

    They're going to take people who have mild CFS like I did and in a decade or so, I hope I'm wrong, but many of those same people may be so much worse that they will pay big time for any bit of exertion too.

    I've read about many people with CFS that this has happened to. This is our problem. Studies like this one work against us all whether we can function well or not. Because they show what a percentage can do but not what many others with the same illness are up against.

    To me, studies like this generate more ignorance. Unless, of course, some people who truly do pay later get into the study, but I literally went from being able to exercise all I want to not at all overnight.

    Now it is true that maybe I would have flunked whatever they're measuring after exercising back when I could do it. I don't know. But what if I passed with flying colors? And it certainly would look different than if I were to do it now, and now people like me can't even go to a test like that.