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“You’re always fighting”: the lived experience of people with postural orthostatic tachycardia syndrome (POTS), 2022, Dunwoody & Iris Knoop

Discussion in ''Conditions related to ME/CFS' news and research' started by Sly Saint, May 8, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Postural orthostatic tachycardia syndrome (POTS) is a debilitating and poorly understood disorder of the autonomic nervous system with many different causes, mostly seen in females of child-bearing age. This study used an illness representation framework to explore the lived experience of those living with a medical diagnosis of POTS.

    Materials and methods
    Six individuals (aged 20–42) were recruited from two POTS online support groups. Individual semi-structured interviews were used to explore the five illness representations of identity, cause, consequences, timelines, and cure/controllability. Data were analysed using interpretative phenomenological analysis (IPA).

    Lived experiences were characterised by four overarching themes: “Fighting to be heard”, “My individual self-management toolbox”, “A mixed bag of emotions”, and “I’m expensive in so many ways”.

    Individuals faced considerable physical, psychosocial and financial challenges and felt underserved by healthcare and support provision. Early diagnosis and recognition of symptoms, along with education on self-management may help reduce associated mental health burdens. A biopsychosocial conceptualisation of this condition may help lead to a more integrated approach to care.

    • Implications for rehabilitation
    • Living with POTS impacts on all aspects of life, including work, family, and social relationships/activities, and has financial burdens.

    • Family doctors need education on the existence of POTS and the importance of providing biopsychosocial support services.

    • More timely diagnosis of POTS is required, with access to specialists who understand the burden of living with POTS.

  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    I'm always suspicious when a BPS approach is noted. Yes, there are many social, financial, and physical implications surrounding POTS.

    Well informed physicians are a start, but this can only go so far.

    Obviously what's needed is good biomedical research and effective biomedical treatments!
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Fake BS.
    Managed discussion putting their own words into the participants' mouths by restricting the topics to what interests them. No patient cares about the biopsychosocial model of illness anymore than people care about the programming language used in the software applications they use.

    It still describes the complete failure of healthcare to do anything competent and fit for purpose, but botches it by expressing it strictly in terms preferred by BPS ideologues.
    Joke of a "paper". "Fighting to be heard", followed by "hey, I know the solution to the problem: the problem!"
  4. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Author is a trainee health psychologist and an Autogenic Training Therapist doing her PHD on POTS at Kings College London, specialises in biopsychosocial models https://www.kcl.ac.uk/people/iris-knoop-1

    I wonder what the questions were for this qualitative study and if they have yet to see a specialist or be treated for their POTS.
    Last edited: May 9, 2022
    Michelle, Lilas, Trish and 1 other person like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

    Supervised by Moss-Morris as a research student. Wonder if she's related to the other Hans Knoop?
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    Autogenic Training was invented in 1950 and there have been 1,300 papers on it since then - rather fewer in the last twenty years. There appear to be no quality trials with a Cochrane Review concluding evidence was poor. The list of journal names for papers is bizarre - things like Complementary Therapy, Nursing and Midwifery, Journal of Peranaesthetic Care, good old J. Psychosomatic Res., Korean Journal of Nursing, lots in German only.

    Just the sort of thing Dr Moss-Morris seems to get involved with.
    And very much the Hans Knoop BPS line with a big B for phoney biology.
    Michelle, FMMM1, Lilas and 4 others like this.

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