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February 25th PCOCA call with CDC

Discussion in 'Upcoming ME/CFS Events' started by Denise, Jan 24, 2014.

  1. Denise

    Denise Senior Member

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    for those who are interested:

    MARK YOUR CALENDARS



    Tuesday, February 25, 2014

    3:00 pm -4:00 pm EST


    for those who are interested:
    CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call


    Call number: 1-800-369-3365

    Participant Code: 1471493


    Please mark your calendars for the next CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call.


    Meeting Agenda


    3:00pm Welcome and Telephone Overview


    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

    Branch Chief, Chronic Viral Diseases Branch

    Centers for Disease Control and Prevention



    3:15pm “CFS and Cognitive Function”

    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



    3:45pm Questions from CFSPCOCACall Mailbox for Guest Speaker and CDC



    Disclaimer:Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.


    Please note that questions for the Guest Speakers and CDC can be submitted only via email at CFSPCOCACall@cdc.gov. This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls. If you would like to be added to the call list, please send an email to CFSPCOCACall@cdc.gov.


    Contact for CFSPCOCA Conference Call:

    CFSPCOCACall@cdc.gov
     
  2. Nielk

    Nielk

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    Since when did CDC go back in time by calling this disease CFS? I thought all government agencies have been using ME/CFS.
     
  3. Denise

    Denise Senior Member

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    I don't think all government agencies have been using ME/CFS.
    These are CDC links:
    http://www.cdc.gov/cfs/

    http://www.cdc.gov/cfs/programs/clinical-assessment/
    In the text of the second link it says "CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME."
    (edit) --- and most of the CDC site does not seem to have been updated since 2012, so I don't think they recently went in and changed it from ME/CFS to CFS. (fwiw)
     
    Last edited: Jan 24, 2014
    Nielk likes this.
  4. SOC

    SOC Senior Member

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    My cynical belief is that the CDC is going to hold onto "CFS" and eventually officially reduce it to some type of somatoform disorder and acknowledge ME (whether under that name or another) as a long-existing diagnosis. That allows them to save face by claiming that our GPs were at fault for misdiagnosing us, no fault of the CDC.

    So I don't expect "CFS" to go away nor do I expect the hundreds of thousands of patients with the broad "CFS" diagnosis who do not fit the CCC or ICC to be given a new diagnosis. Face-saving and ass-covering all around. No acknowledgement of abuse. Blame shifted to some large, amorphous group so no one is accountable. :rolleyes:
     
    Nielk, taniaaust1 and ggingues like this.
  5. caledonia

    caledonia

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    NIH and FDA I think have been using ME/CFS, but not CDC.
     
    Nielk and SOC like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    CDC has never liked to call CFS ME, they said for a very long time they were different illness which was on their site (a way out for them if shit ever hit the fan). They will always be looking for excape routes.. hence I liked SOC's post. They probably will do something like that
     
    Nielk likes this.
  7. Bob

    Bob

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    Last edited: Feb 25, 2014
    Nielk likes this.
  8. Nielk

    Nielk

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    Anyone listening to this?
     
  9. Bob

    Bob

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    Yep, I'm listening. Are you?
     
    waiting and Nielk like this.
  10. Nielk

    Nielk

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    I jumped in at 3:30
     
  11. Nielk

    Nielk

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    Dr. Unger says PEM is not unique to ME/CFS.
     
  12. Bob

    Bob

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    CDC will participate in the IACFS/ME conference. (5 CDC personel will attend.)
     
  13. Bob

    Bob

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    I didn't manage to make a note of any further information except some info relating to the CDC's multi-site study.
     
  14. waiting

    waiting Senior Member

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    She also said (I think) that it cannot be measured -- but we already know that it can -- the Stevens Protocol 2-day CPET measures PEM. The same test also has to date revealed this PEM-effect in ME patients only -- not in other diseases.
     
    Last edited: Feb 25, 2014
    taniaaust1 and Nielk like this.
  15. Nielk

    Nielk

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    Unger said, I think, that this exacerbation after exercise is seen in some inflammatory diseases and in heart failure patients. Has the 2-da CPET test been tested in these other diseases?
     
    taniaaust1 likes this.
  16. Nielk

    Nielk

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    From the last half of Dr. Lange's talk, I thought she did a good job describing in detail the neurological/cognitive difficulties that we encounter. She went on o say that these can be shown on imaging tests like MRIs, functional MRIs and Spect scans. She said that our difficulties are compounded when we have to multitask like taking notes when someone is talking. She said we are better off listening and then writing down what we remember. I am very challenged that way and if i wait till the end, not much remains in my memory. I do much better with written comments because then I can keep going back and re-reading it.
     
    SOC likes this.
  17. Gemini

    Gemini Senior Member

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    She added too, I think, PEM occurs in Lyme, HIV, & several diseases (which I couldn't write down fast enough) the difference in ME/CFS being long recovery time? This would argue for 2-day CPET it would seem & indicate duration is a differentiating feature wouldn't it?
     
    Nielk likes this.
  18. SOC

    SOC Senior Member

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    Do we know that she understands the difference between PEM and exercise intolerance? She mentioned symptom exacerbation, which suggests she might, but.....
     
  19. Ember

    Ember Senior Member

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    What manner of incompetence allows Dr. Unger to host a talk on “CFS and Cognitive Function,” complete with an explanation of how notetaking during listening overwhelms patients, while she stubbornly refuses to record her calls?

    Is she feigning acquired-brain-injury status herself when she forgets to mention that the Stevens Protocol measures exercise intolerance? Perhaps she's counting on patients' having tuned out due to cognitive overload by the time she responds to her few preselected questions.
     
  20. waiting

    waiting Senior Member

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    I think she said only that the self-reported *subjective* description of the fatigue experienced by patients with those diseases sounded very similar to the fatigue described by ME patients. In my opinion, this is where the *objective* 2-day CPET can settle this question of whether the fatigue is the same or not. And according to the research, it's not.
     
    PennyIA likes this.

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