Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Perceived stress, illness invalidation, and symptom severity in ME/CFS

Discussion in 'Latest ME/CFS Research' started by Snow Leopard, Dec 13, 2016.

  1. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,576
    Likes:
    12,144
    South Australia
    Perceived stress, illness invalidation, and symptom severity in myalgic encephalomyelitis/chronic fatigue syndrome
    Elizabeth A. Kendrick
    & Denise Beesley

    http://dx.doi.org/10.1080/21641846.2016.1250862
    http://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1250862?journalCode=rftg20
     
    pcmenten, duncan, NL93 and 17 others like this.
  2. Sean

    Sean Senior Member

    Messages:
    3,181
    Likes:
    17,313
    In other words, any psycho-social component is secondary in the causal chain and arises from the way the medical profession and society respond to the primary problem.
     
    pcmenten, barbc56, duncan and 3 others like this.
  3. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,656
    .
    .
    'Illness invalidation from medical professionals'
    .
    ... Not just illness invalidation, but broken bone injury invalidation ......

    I can hardly bear to speak about being refused examination and treatment of a broken and displaced rib in a UK hospital A&E (2003) ..... because the nurse was insane and the doctor was in a deluded world of his own .... both of them were just fucking crazy .... besotted with beliefs about 'ME is psycho-bloody-somatic' and .... 'catstrophising normal body sensations' ....

    The broken rib was sticking right out of my chest .... raw and clearly visible, no one could miss it .... except that crazy nurse and deluded doctor persistently refused to even LOOK at it .... despite being repeatedly asked to by me and my incredulous carer over and over for 20 fucking minutes !!!!

    The reason they were fucking crazy/deluded/abusive/cruel/unprofessional/unethical and bloody dangerous ....

    Because they had been Brainwashed into believing that severely sick people with ME are not really sick and not even really fucking injured even when they have a visibly broken bone!!

    In a country (the UK) in which healthcare is supposed to be free at the point of service .... someone who is so sick they were nearly falling off the chair, supported by an incredulous and protesting carer .... treated like a deluded hysteric instead of being examined, X-rayed and treated for a broken bone ..... I was abused by two doctors and a nurse on that day .... what the NHS maniacs did NOT do was examine and treat the broken bone

    I am sure you can tell that I am still traumatised from that horrific experience ... as well as having an untreated broken bone .....

    Our wonderful NHS .... Ha! ... I avoid GPs, Hospitals ... everything ... as the only way to avoid being abused by the bastards.

    I don't want to discuss it further
    .
     
    Last edited: Dec 14, 2016
    pcmenten, Jan, atleje and 11 others like this.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    Note that the scoring for questions 3, 5 and 8 are reversed

    https://shareok.org/bitstream/handle/11244/17219/2015_Kendrick_Elizabeth_Dissertation.pdf?sequence=5
     
    Last edited: Mar 18, 2017
    Valentijn likes this.
  5. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    It would be interesting to have scores for other conditions.
     
    Last edited: Mar 18, 2017
    Valentijn likes this.
  6. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.972.8628&rep=rep1&type=pdf
    Spouse/Family/Medical professionals/Work/Social Services

    Scores from Kendrick's thesis:
    https://shareok.org/bitstream/handle/11244/17219/2015_Kendrick_Elizabeth_Dissertation.pdf?sequence=5


    It would be interesting to have scores for other conditions.

    Using a weighted average, this gives a total I*3 score for ME/CFS of 3.03375 a question or 24.27 per set of 8 questions.
     
    Last edited: Mar 18, 2017
  7. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    Perceived Stress Scale (PSS) was correlated with:
    I*3 Partner
    I*3 Family
    I*3 Work

    People probably have more contact with these individuals than medical professionals meaning any illness invalidation could have a bigger effect on someone's stress.

    Speculation: There might perhaps be some variation among the individuals and countries about the effect of illness invalidation from professionals. For example in some countries especially if you have money, you can shop around more for health and medical professionals so if a particular one is not supportive, it can be easier to move on to somebody else than for some other people.
     
  8. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    Snow Leopard likes this.
  9. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
     
  10. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
     
    Snow Leopard likes this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
     
    duncan likes this.
  12. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
     
    duncan likes this.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
     
  14. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    It is easy to imagine that some lay and medical media coverage of ME/CFS has caused illness invalidation either from medical professionals, social services, work colleagues and/or from people's partners and families. This is one reason people with ME/CFS would be very conscious of how the illness is portrayed in the media.

    Indeed the CBT/GET model by itself probably causes illness invalidation.
     
    Valentijn, Snow Leopard, Sean and 3 others like this.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    There was no major psychobabble in this paper that I can recall. There was no mention of CBT or graded activity/exercise.
     
  16. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    I imagine illness invalidation would be worse again before people had a diagnosis.
     
  17. duncan

    duncan Senior Member

    Messages:
    1,933
    Likes:
    4,192
    All in all, this abstract is a good read, and fairly sympathetic.

    But the stated concern over "...decrease treatment adherence..." is a bit disconcerting. In the greater context of ME/CFS, this is meaningless - kind of like berating sufferers of any virus for not taking antibiotics.

    As has been discussed in more than one thread on PR, it is common for pwME to know more than their clinician. As for so called "treatments"...
     
    Valentijn, Mel9 and Webdog like this.
  18. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,544
    Likes:
    19,658
    Germany
    Attaching numerical evaluations to replies on a survey and then claiming the results mean anything (or are even "science") is enough for it to be psychobabble for me.
    I find this creepy. It could be interpreted as saying "even if sufferers think they are being treated badly by their doctor, and even if it's true, we have demonstrated that this doesn't exacerbate their symptoms so even if their doctor is an arrogant prat it isn't doing any harm and they can stop moaning and blaming the doctor for anything."
     
  19. RogerBlack

    RogerBlack Senior Member

    Messages:
    847
    Likes:
    2,736
    You can also read it as a dismissal of claims that 'sickness role' is important.
    Any doctor with concerns that they are validating the persons illness and encouraging them to remain sick is doing it without evidence.
     
  20. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,560
    I don't think this has been proven. There could be a long gap between any psychological stress suffered following invalidating contact with a medical and when their stress levels were assessed.
     
    barbc56 likes this.

See more popular forum discussions.

Share This Page