Stanford/Montoya Original/Preliminary Study Patient Status?

Discussion in 'Fibromyalgia Main Forum' started by waltz, Oct 24, 2010.

  1. waltz

    waltz New Member

    Hi everyone,

    I remember reading a post here a couple years ago by someone who said they had tracked down or followed up with several of the original preliminary Stanford study participants, and I seem to recall they said they weren't as improved as had been claimed in the media blitz.

    I brushed this off at the time, but now I am looking for this information again. Because after being a patient of Dr. M for a few years, I realized he was able to get me to say that my cognitive functioning went to 90% when it was really 5%. !!! It took me a long time to figure out how this was happening.

    Also for example, the one piece of data that is Google-able is that the preliminary study claimed that the patients who had improved went back to 90%+ functioning. However, you can Google an article about Donna Flowers, the ice skater who participated, which says at the time of the article she was at 75%, not 90%:

    "Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. “Now I pace myself, but I’m probably 75 percent of normal,” she said."

    Here is the discrepancy. In the preliminary study, I deduce that Donna Flowers is patient #4 in table 1 by her age and gender. It says she recovered to 95%.

    Is whoever posted the post I am thinking of still here and can tell me about it again? Or anyone else have any info on the original preliminary study patient status, or the still yet unpublished clinical trial patient status?[This Message was Edited on 10/24/2010]
  2. Slayadragon

    Slayadragon New Member

    Without a specific explanation, I never know how to judge these scales.

    Are we talking Karnofsky Performance?

    90 = Capable of normal activity, few symptoms of disease.
    70 = Caring for self, not capable of normal activity or work.

    Someone who could go snowboarding and take yoga/ballet classes seems to be higher than a 70 on this scale. More like a 90 - functioning normally, but not at the same level as in the past.

    If people think they should be able to be active for 16 hours a day, and instead they're active for 12 hours a day, that would be 75% of normal. But I still think it would be a 90 on the scale.

    Best, Lisa
  3. waltz

    waltz New Member

    That is a good point. Montoya doesn't use any calibrated scale. It's just a patient say-so thing. Each patient's number means a different thing.