1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

CDC Multi-site Study - An interview with Beth Unger

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 31, 2014.

  1. Ritto

    Ritto

    Messages:
    26
    Likes:
    30
    I was recently able to listen to a conference call, from the UK, on Skype, from which there was no charge.
     
  2. Bob

    Bob

    Messages:
    8,857
    Likes:
    12,438
    South of England
    I just listened to the CDC's 25th Feb telephone conference call.

    Beth Unger said that the exercise study will begin soon.

    They are awaiting approval from a research ethics committee, and expect to get approval soon.


    On a separate note, stage 3 of the CDC's project will include both homebound and newly diagnosed patients.
     
    Last edited: Mar 2, 2014
    Valentijn and Firestormm like this.
  3. Bob

    Bob

    Messages:
    8,857
    Likes:
    12,438
    South of England
    Beth Unger has said that the cognitive tests for the CDC multi-site study have been planned in consultation with Dr Gudrun Lange*.

    Dr Gudrun Lange gave a talk on the CDC's 25th Feb telephone conference call.

    I was very impressed by her talk, and so I hope her knowledge is reflected in the cognitive tests that the CDC use.

    Lange mentioned that, in cognitive tests, ME/CFS patients are accurate but slower.
    And she said that complex tasks show most difference from controls:
    ME/CFS patients have difficulty with complex information processing and multi-tasking.

    In a swipe at those who dismiss ME/CFS patients' cognitive problems, Lange said that ME/CFS patients do not amplify their cognitive problems (i.e. they do not invent them), but they have cognitive problems that may not be picked up by simple tests that do not test complex cognitive functioning.


    This is exactly how I understand the nature of ME patients' cognitive function, from research studies that I've read.
    i.e. for simple tasks our tests results can be normal, but differences show up on complex processing tasks, specifically processing speed during complex tasks.


    * Gudrun Lange, Ph.D.
    - Consultant Clinical Neuropsychologist, Pain and Fatigue Study Center, Beth Israel Medical Center, NY, NY.
    - Professor, Department of Physical Medicine and Rehabilitation Rutgers University.
     
    Last edited: Mar 2, 2014
  4. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    @Simon See above - you mentioned cognition earlier on the dog-and-bone.
     
  5. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Simon wrote a great article about the evidence on cognitive function in ME/CFS last year:
    http://phoenixrising.me/archives/16688
     
  6. Simon

    Simon

    Messages:
    1,529
    Likes:
    4,896
    Monmouth, UK
    Dont suppose anyone has a recording of this call? I was late, and it wouldn't let me in!
     
  7. Bob

    Bob

    Messages:
    8,857
    Likes:
    12,438
    South of England
    aimossy, Simon, Kati and 2 others like this.
  8. shahida

    shahida

    Messages:
    72
    Likes:
    140
    hi I've some questions:
    *will Dr Lipkin do actual stomach muscle biopsies for this study?
    *which criteria does it use to determine 'me/cfs' patients?
    *it looks increasingly like the me community will have to self fund such studies but is there a more effective way of finding out about them as opposed to ill people having to go onto this site? There's nothing wrong with that in principle but many people just can't and no one I know with ME knows about this as they're too ill too actually expend scant energy as look stuff up. eg. is there a emailing system where the latest research appeals come to you? Maybe emails to all the a few people in the local support groups across the world who may be able to tell others in the group eg. via newsletters and email. It could be given a name like 'local support group information (or something better what with brain fog) . I've only found out about this by looking this up and I can't (or shouldn't) do that so often .. This way we'd maximise the money raised.
    thanks for any info' out there
     
    Firestormm likes this.
  9. Bob

    Bob

    Messages:
    8,857
    Likes:
    12,438
    South of England
    Hi shahida, and a very big welcome to the forum. :)

    You've posted your message on a thread about the CDC's program, but you seem to be asking about Dr Lipkin's research.

    If you're responding to a recent article about Dr Lipkin's proposed microbiome study, it would be best to post a comment on that thread.

    If you'd like me to copy your questions over to the appropriate thread, then please let me know.

    This is the recent article about Dr Ian Lipkin and the fundraising project:
    http://forums.phoenixrising.me/inde...robiome-crowdfunding-campaign-launches.29252/
     
    Last edited: Mar 28, 2014
    aimossy and Firestormm like this.
  10. shahida

    shahida

    Messages:
    72
    Likes:
    140
    yes thanks Bob it would be great if you could do that. My brain really can't handle computers well-sites are so 'busy'. my apologies but I'm sure you understand....
     
  11. Bob

    Bob

    Messages:
    8,857
    Likes:
    12,438
    South of England
    Simmaron Research has published a new blog on its website by Cort Johnson about the CDC's multi-site study. I don't think there's any new information in it.

    Going Grassroots: Dr. Unger on the CDC’s Chronic Fatigue Syndrome Multisite Studies
    Cort Johnson
    November 8, 2014

    http://simmaronresearch.com/2014/11...s-chronic-fatigue-syndrome-multisite-studies/

    (If anyone wants to start a new thread about it then please do.)
     
    Last edited: Nov 8, 2014
    Simon likes this.
  12. Hate ME/CFS

    Hate ME/CFS *****

    Messages:
    48
    Likes:
    43
    Sacramento, California
    Dr Beth Unger refuses to remove the CDC's outdated "toolkit", and she has refused to recognize the CCC definition of CFIDS. Maybe if they did one of these two things, the CDC could be taken seriously.
     

See more popular forum discussions.

Share This Page