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I Have ME/CFS or Long COVID; Where do I go from here? Blog: Workwell

Discussion in 'General ME/CFS news' started by Sly Saint, Aug 7, 2023.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    UK
    I Have ME/CFS or Long COVID; Where do I go from here?
    https://workwellfoundation.org/i-have-me-cfs-or-long-covid-where-do-i-go-from-here/
     
    Sly Saint, Aug 7, 2023
    #1
    Dolphin, ahimsa, Kalliope and 8 others like this.
  2. Trish

    Trish Moderator Staff Member

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    Location:
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    Bad start illustrating with a hand glued to forehead while sitting at computer image.
    The rest is fine, it describes PEM accurately and pacing briefly. The main recommendation is having a 2 day CPET so clinicians are better informed about what to recommend for managing, and to help with disablity benefit application. This is clearly an article geared to advertising what the Workwell clinic does including that they do 2 day CPET.
     
    Trish, Aug 7, 2023
    #2
    Dolphin, ahimsa, alktipping and 7 others like this.
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Agreed.

    Setting aside the advertisement for this group, the educate oneself advice is very important. PwME need to know more about their disease, in order that they can at least try to impart the info to their doctor(s).

    Another stage in the battle is getting doctors to understand, and follow through as an advocate for their patients with ME. That is at the very least, connecting the dots well enough to fill out disability forms for their patients with ME.

    There are still gaps in this basic process, where physicians fail to understand the import of these types of test results, and drop the ball. They need to know what the test results really mean for patients' function and employability, and follow through with knowledgeable completion of disability forms.

    Pie in the sky here, but it would be wonderful if the 2 day CPET was incorporated into our regular health care systems.

    And, if physicians were educated on what the results mean for patients, instead of patients having to seek out, and pay for travel and specialized testing fees, and then work at educating their doctors about the results, in order that their docs can do something (anything!) for them.
     
    DokaGirl, Aug 7, 2023
    #3
    Dolphin, Michelle, alktipping and 5 others like this.

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