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Open What happens when people with ME keep symptom diaries?

Discussion in 'Recruitment into current ME/CFS research studies' started by Dolphin, Aug 11, 2023.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,317
    I’m unclear whether this is UK only or not. Seems possible it’s not.

    She has/had ME herself as she says

    https://meassociation.org.uk/2023/0...ens-when-people-with-me-keep-symptom-diaries/

    Research Recruitment: What happens when people with ME keep symptom diaries?
    August 8, 2023


    Hannah would like to hear from anyone with ME/CFS who uses (or has used) a diary to help keep track of symptoms. The study will comprise a series of focus groups that will help her understand the effects that diary keeping and symptom tracking can have and will lead to publication as part of her thesis.

    Hannah Field, PhD Researcher at LICA, University of Lancaster




    https://meassociation.org.uk/2023/0...ens-when-people-with-me-keep-symptom-diaries/

     
    Last edited: Aug 12, 2023
    Dolphin, Aug 11, 2023
    #1
    DokaGirl and Hutan like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
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    Location:
    UK West Midlands
    I think it would be equally interesting and useful to hold groups of people who don’t use these approaches to find out why not and how they are affected by ME symptoms.
     
    NelliePledge, Aug 11, 2023
    #2
    bobbler, alktipping, Andy and 6 others like this.
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    5,317
    I forgot to say she says the following which is reassuring to see in print:
    He [a doctor she saw] was already critical of GET (which has now been thoroughly debunked)
     
    Last edited: Aug 12, 2023
    Dolphin, Aug 11, 2023
    #3
    bobbler, alktipping, MeSci and 4 others like this.
  4. Hutan

    Hutan Moderator Staff Member

    Messages:
    27,828
    Location:
    Aotearoa New Zealand
    It's an interesting topic. I imagine there are things like the following to discuss:

    * understanding of symptoms, including of the concept of PEM

    * self-belief that the symptoms are real (I was pretty amazed when I found out how unusual my cardiovascular observations were - heart rate, shock index, pulse pressure)

    * adjustment of activity management

    * more objective assessment of treatments

    * reaction of doctors to the undertaking of self-monitoring (evidence of health anxiety)

    * reaction of doctors to the presentation of findings (skepticism?; discomfort when the patient talks about things like POTS, PEM, terms that they may not be familiar with; cooperative approach to assessing medications)

    * time consuming nature of some symptom monitoring approaches - consuming time for living, which is a problem when you don't have much to start with - is it something you just do for a while?

    * use of wearables to reduce time spent on monitoring

    * potential for communities of patients to develop around monitoring projects

    * sources of information for monitoring (good and bad)

    * liaison between researchers and patients who are symptom monitoring

    And that's just off the top of my head.

    This study might support a push to ensure that people newly diagnosed with ME/CFS (including post-Covid-19 ME/CFS) have access to monitoring technology.
     
    Hutan, Aug 12, 2023
    #4
    alktipping, RedFox, shak8 and 1 other person like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    Symptom monitoring is becoming easier for those able to use smart phones with apps like Visible and the Solve you+me app which I think is still only available in the US.
    One area that I find hard to monitor is cognitive function/fatiguability/activity.
    If the makers of an app really understand ME well it should be possible to build in readings from wearables and other clinical testing, and do some analysis of the data to help the person with detecting patterns.
     
    Trish, Aug 12, 2023
    #5
    alktipping, RedFox and Hutan like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,515
    Too much energy and cognitive ability to maintain physical ( as in paper ) symptom diaries - probably impacted negatively when we did one way back.
    My daughter can't remember what she's eaten 20 mins after eating it , so it can be a misremembering record if you can't fill it in in real time.
    Also it's difficult to detangle cumulative effects .

    She uses her camera on phone to record what she eats and any physical issues ( skin rashes etc) . This has the benefit of dating things.
    She uses a Garmin activity monitor to track steps, HR and a useful body battery function.
    She has an app that uses emojis to rate days ( can also note things on it , but emojis give a good monthly picture )

    From these we can see impact of diet , impact of seasons , impact of hormones ( significant for pain ) , and the contribution emotional impacts have ( her grandfather died earlier this year , her classmates have all graduated this year etc)

    I have suggested the invisible app but this combination seems to work so she is reluctant to change.
     
    Amw66, Aug 12, 2023
    #6
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  7. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    I wouldn't push anyone to use apps if it didn't suit them. Taking photos if affected by diet and having visible symptoms is a great idea.
     
    Trish, Aug 12, 2023
    #7
    alktipping, RedFox, Hutan and 3 others like this.

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