International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

CFS Research Study with Lumbar Punct - Upcoming CFS study with Dr. Baraniuk at Georgetown University

Discussion in 'Active Clinical Studies' started by Bob, Jul 29, 2015.

  1. jimells

    jimells Senior Member

    Messages:
    2,007
    Likes:
    6,147
    northern Maine
    This is how I feel every morning when I wake up. With a heap of POTS on top just for good measure...
     
  2. jimells

    jimells Senior Member

    Messages:
    2,007
    Likes:
    6,147
    northern Maine
    Haha, I love your honesty. Thank you for making my day. :thumbsup:
     
  3. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    How I wish the researchers who have an opportunity to study exercise in ME/CFS would do it properly!

    It is clear from the research to date (the Snell/Stevens/van Ness and Keller papers) that a 2-day maximal test is needed for the ME/CFS specific abnormalities to show up. Why muddy the waters with sub-maximal tests (like Baraniuk) or 1-day tests (like CDC)? When you have ME/CFS patients and a CPET test going, why on earth not make sure to repeat the Snell/Stevens/van Ness and Keller protocol (and either confirm or refute their findings)?

    Especially researchers getting the much sought-after NIH funding need to read up on the current knowledge and design trials very carefully, I think. We don't get many chances. Look at Fluge&Mella in Norway, they are so thorough and (in spite of being oncologists, not ME experts) so up-to-speed on current research. From my layperson perspective, they seem to be doing what everyone should be doing: using CCC, doing meticulous trial design, trying out current leads (such as the metabolic issues shown in the 2-day CPET maximal test, Stevens Protocol) in sub-studies. Isn't that the kind of research we need to get going everywhere?

    - Frustrated! -
     
    Last edited: Aug 30, 2015
  4. perovyscus

    perovyscus

    Messages:
    96
    Likes:
    57
    I am in this study. I am spending a great deal of money to participate.

    I will be Facebook Live-ing my lumbar puncture, in case someone wants to watch a grown man or woman cry.
     
    BurnA, RL_sparky, Helen and 1 other person like this.
  5. Helen

    Helen Senior Member

    Messages:
    2,107
    Likes:
    3,278
    Thank you for participating. I have had three lumbar punctures and I didn´t cry , so you probably won´t either. I got local anesthesia, and I just felt the movements but no pain. I learnt that the thinnest, possible diametre of the needle is the most crucial not to cause headache. Best of luck!
     

See more popular forum discussions.

Share This Page