FYI huge FMS/CFS info from Dr. Bateman

Discussion in 'Fibromyalgia Main Forum' started by erinwilburn, Sep 13, 2008.

  1. erinwilburn

    erinwilburn New Member

    I went to a convention today for FMS and it was amazing! I will be getting all the info together today after I recover for a few hours. She talked about bloodmarkers that reasherchers at the U of U have found for FMS and CFS and about genetic links. Also saw the movie Fibromyalgia by the Achers family. wonderful stuff. Please keep your eyes open for the info!
  2. gapsych

    gapsych New Member

    Great!! I will be looking forward to seeing the information.

  3. gapsych

    gapsych New Member

  4. aftermath

    aftermath New Member

    TTT (to the top)

    For this info. Dr. Batemann is one of the best in the business.
  5. erinwilburn

    erinwilburn New Member

    Dr. Kathleen Light from the University of Utah spoke at the conference I attended today the following is the information she gave us on a power point. She emphasized that this is truly the beginning of research in this area and the findings have been considered to be too small to be published but are so important.
    New Helpful Biomarkers in CFS and FMS
    Paradox in FMS and CFS:
    *Gradual increase in whole body exercise is one of the most effective treatments to slowly reduce symptoms and normalize function
    *Yet exercise even at a moderate level causes worsening of pain and fatigue symptoms in study group patients at 24 and 48 hours later, and sometimes much longer

    Legal and Scientific Consideration of the Exercise Test --- Margaret Ciccolella, EdD, JD; Staci R. Stevens, MA; Christopher R. Snell, PhD; J. Mark Van Ness, PhD, (University of the Pacific, Stokton, CA) Journal of Chronic Fatigue Syndrome 2007, 14:7-23
    *A standardized bicycle exercise protocol to at least 85% of predicted maximum heart rate was repeated twice 24 hours apart in 6 CFS patients and six normal controls.
    *Controls showed only 2-3% change in oxygen consumption from test 1 to test 2 while CFS patients declined by an average of 22-27% based upon premise that test-retest variability should not exceed 8% this study indicates significant impaired metabolic capacity 24 hours after initial exercise test in CFS patients.
    *This is at the same time period when CFS and FMS patients report increases in muscle pain and fatigue even at rest or during simple movements.
    *We ask: can we find blood-based biomarkers that are associated with this exaggerated delayed onset muscle pain and fatigue in CFS and FMS patients?
    So this was the info found in the study that the Uof U has now done on a slightly larger scale. So there are a lot of scientific words in the next info but if you can get past that the data speaks for itself.
    Our R21 pilot study uses 5 blood samples before and up to 48 hours after moderate exercise.
    *Current sample: 20 with CFS and 17 healthy controls. 15 of the 20 with CFS also have FMS
    *Do CFS patients show greater increases than controls in ion channel receptors on white blood cells after 25 min of whole-body exercise at 70% of age-predicated maximum heart rate ( this is less than the above study)
    *are these differences maintained at 24 or 48 hours after exercise, when muscle pain and fatigue worsen?
    *Beginning at 30 min. after exercise and continuing at 8, 24 and 48 hours after exercise, CFS patients with and without FMS increased one ion channel receptor (type P) to 4 times its pre exercise level. Healthy subjects showed no increase at all. Based on animal research this type of receptor seems especially sensitive to fatigue.
    *Beginning at 30 min. after exercise and continuing at 8, 24 and 48 hours after exercise, CFS patients with and without FMS increased one ion channel receptor (type A) to 2 times its pre exercise level. Again healthy subjects showed no increase at all. This receptor is sensitive to both muscle pain and fatigue.

    So what I get from this is that they have found a blood based test that shows that we have changes in our bodies after even very light exercise that “normal” people don’t. But again they have only tested a total of 6 people in CA and 20 in UT but I think it sounds promising. She then talked about why this testing is so important…the medical community responds mainly to hard evidence i.e. blood tests.
    Then Lucinda Bateman talked about gene studies, it was hard for me to understand but it was also the last 30min of a 4 hour conference and everyone was fading fast. But here is what I did understand…
    Genomic studies identify differently expressed genes in numerous pathways. When they compared the genes of CFS/FMS patients against normal healthy DNA they found 88 genes where different from normal controls! The biggest problem right now is that the tests are so expensive and not yet completely proven. But oh my word 88 differences!
    So they also talked about the idea that we are genetically predisposed to FMS/CFS but it is only triggered after a traumatic event in our lives. They also said that those who have FMS in their family history are 8.5 times more likely to be dx themselves which so made me think about my family.
    We also screened the movie “What Fibromyalgia taught me” Please try to track down a copy. It was so moving and is the perfect thing to show family who just won’t get it. The film makers where there and it was so great to be able to thank them in person for the work they have done. It made a greater impact on me because it came from the daughters point of view who when her mom was first dx did not believe in FMS at all.
    So I know this is a lot of not so strong info but it shows that we are moving forward!
  6. erinwilburn

    erinwilburn New Member

  7. stschn

    stschn New Member

    Thank you for the information on PFL the article in the Cronicle is in the 2006 Science and Research Issue and the Lab is working with some of us on an anerobic progame that does not create the problems that other exercise programs do. So exercise is possible if it's the right kind. Their program has helped 80% of the people they work with regardless of what subset the people fall into. It is my understanding that the NIH is also looking into this issue to use as a biomarker for diagnosis.
    [This Message was Edited on 09/17/2008]
  8. stschn

    stschn New Member

    Because it's good information.
  9. hensue

    hensue New Member

    What are they saying and where can we get the info and the film?
    fibro cognitive fatigue!
  10. SpecialK82

    SpecialK82 New Member

    Thanks so much for posting the information - and having the energy to go to the convention!

    It would be wonderful if they could identify us with a blood test one day soon.

    I'm looking forward to seeing continued research!

    Thanks again,
  11. erinwilburn

    erinwilburn New Member

    the convention was not as draining as I thought it would be. So well orginized. There was a full lunch buffet searved the entire time, 6 massage tables(allways full) and 40 beds in a room just off to the side of the speackers. I spent most of my time there. And we were given copies of every powerpoint used plus some. They put so much thought into getting people to come and they had about 400 people show up! I am going totry to gp to more functions now that I know about the work they put into them!
  12. 3gs

    3gs New Member


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