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UpToDate: Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome, 2022, Jenkins

Discussion in 'Resources' started by Tom Kindlon, Sep 6, 2023.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,202
    https://www.uptodate.com/contents/p...ic-encephalomyelitis-chronic-fatigue-syndrome

    Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome

    Outline

    AUTHOR:
    Wilhelmina D Jenkins
    SECTION EDITOR:
    Anthony L Komaroff, MD
    DEPUTY EDITORS:
    Jennifer Mitty, MD, MPH
    Karen Law, MD

    Contributor Disclosures

    All topics are updated as new evidence becomes available and our peer review process is complete.
    Literature review current through: Aug 2023.
    This topic last updated: Jul 08, 2022.

    ---
    I thought this was very good and it’s great that it's up on an independent site. Thanks @Wilhelmina Jenkins
     
    Last edited: Sep 6, 2023
    shak8, Michelle, Kalliope and 20 others like this.
  2. mango

    mango Senior Member (Voting Rights)

    Messages:
    2,517
    Looking forward to reading this! :thumbsup:
     
    shak8, Kalliope, Helene and 6 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    We have a thread from 2018 when a member tried unsuccessfully to get UpToDate to remove their recommendation of GET/CBT for ME/CFS.
    UpToDate ME/CFS information
    If you have an information about it's section on ME/CFS now, please post it on that thread.
     
    shak8, Kalliope, Helene and 8 others like this.
  4. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

    Messages:
    220
    Location:
    Atlanta, GA, USA
    Thanks, Tom!
     
    shak8, Kalliope, EzzieD and 18 others like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Thank you @Wilhelmina Jenkins for sharing your story in this way. The more clinicians see coherently expressed and honest accounts of patients' experience the better, and yours does this very well.
     
    shak8, Kalliope, Helene and 16 others like this.
  6. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    470
    This is one of the articles I give to healthcare practitioners on a regular basis.
    They get a lot out of it!
    Thank you so much @Wilhelmina Jenkins !!
     
    shak8, Kalliope, Helene and 14 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,202
    I put it aside recently to read. I didn’t keep a record of the source but think now it is was from your mailing list for caregivers. :thumbup:
     
    Last edited: Sep 6, 2023
    shak8, Kalliope, Helene and 9 others like this.
  8. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,814
    Location:
    Aotearoa New Zealand
    I found this to be a great patient account, useful for new patients and for health care professionals to read. It conveys the awfulness of the illness, while not eliminating hope. I'm sorry that you have been through so much @Wilhelmina Jenkins; I hope you, and all of us, get some answers soon.

    I like the proposal of 'cognitive disruption' as a replacement for the term 'brain fog'. Your account reminded me of my early years, when I was trying to deliver quantitative cognitive work and could not manage it, despite trying so hard and despite it being something I could normally achieve easily. And feeling desperate about letting people down in a field where negative conclusions would be drawn not just about me, but also about the capacity of women in general.

     
    shak8, Kalliope, Helene and 21 others like this.
  9. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

    Messages:
    220
    Location:
    Atlanta, GA, USA
    Thank you all for your kind words!
     
    shak8, Kalliope, Comet and 14 others like this.

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