Discussion in 'Chronic Fatigue Syndrome (ME/CFS) Research' started by Tina, Oct 24, 2018.

  1. Tina

    Tina Well-Known Member

    I don't understand how they are not finding enough participants but for as large as our community is and as much as we are suffering we should have people flooding this study. I met all of the requirements except the length of illness which is 6 months to 5 years. (I have been sick for over 10 years) I suspect length of illness is one of the big stumbling blocks, this and people being too sick to participate. I participated in the Outpatient Focus Group and I was / am so hopeful for this study. In 2016 this was a big deal. So excited that we were getting a serious study through the NIH. What has happened?

    There were only 271 initial inquires. This seems so low to me. After screening they have only found 15 ME/CFS patients and 17 healthy controls.

    If you can spread the word and consider participating if you can.
  2. Carl#1

    Carl#1 Member

    I am well over the limit so I would say many do not qualify because of a similar situation and also for the reasons you have pinpointed.

    Personally I do not need any studies because I worked it out a long time back in Jan 2014. Beating the biofilm protected bacterial infection is taking a lot of doing and I believe that I am getting close but other issues have made everything far more difficult, including suspected lyme in the last 2 years among other things.
    Last edited: Jun 3, 2019