Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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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

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    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

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    Haha, I love your honesty. Thank you for making my day. :thumbsup:
     
  3. Anne

    Anne Senior Member

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    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

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    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

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    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!
     

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