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Patient surveys and PACE: what patient surveys tell us about efficacy and safety of GET, CBT and pac

Discussion in 'Latest ME/CFS Research' started by Karen Kirke, May 12, 2017.

  1. Karen Kirke

    Karen Kirke

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    New open-access peer-reviewed commentary by me, Karen D Kirke, on patient surveys published online in Journal of Health Psychology today, ME Awareness Day:

    http://journals.sagepub.com/doi/full/10.1177/1359105317703787 (=online version)

    http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787 (=pdf)

    Title: “PACE investigators’ response is misleading regarding patient survey results” by Karen D Kirke

    Abstract:

    The PACE investigators’ citation of a patient survey might mislead readers into thinking that the experience of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) supports PACE findings. In fact, patient survey evidence directly contradicts the results of the PACE trial. A review of survey data published between 2001 and 2015 reveals that for most patients, graded exercise therapy leads to worsening of symptoms, cognitive behaviour therapy leads to no change in symptoms, and pacing leads to improvement. The experience of people with ME/CFS as reflected in surveys is a rich source of information, made more compelling by the consistency of results. Consequently, patient survey evidence can be used to inform practice, research and guidelines. Misrepresentation of patient experience must be vigorously challenged, to ensure that patients and health professionals make decisions about therapies based on accurate information. (Kirke, 2017)


    If you’re brain-fogged, skip to the figure 1 on p.3, and the discussion starting p.7.

    A bit of background on me, as this is the first paper I have written on ME:

    I am a health professional and have severe ME (housebound).

    I am a Speech and Language Therapist. I worked in a hospital assessing, diagnosing and treating swallowing and communication disorders in adults with a wide range of conditions, including (but not limited to) Parkinson’s disease, multiple sclerosis, motor neuron disease, dementia, stroke, traumatic brain injury, cancer, chronic obstructive pulmonary disease, schizoaffective disorder. Prior to training as a Speech and Language Therapist, I was a linguist. I have had ME/CFS since 2008.
     
    Last edited: May 12, 2017
  2. daisybell

    daisybell Senior Member

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    Hi @Karen Kirke
    I am an SLT too - although not working anymore - and I specialized in adult neurology and palliative care. I loved the work.....
     
  3. Karen Kirke

    Karen Kirke

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    @daisybell So nice to hear from another SLT. When I had to stop working I was doing a split post in Medicine for the Elderly and (adult) Neurology, so very similar to your specialization. Like you, I absolutely loved the work. If you'd like to be in touch, email me (address on bottom right corner of first page of commentary).
     
  4. A.B.

    A.B. Senior Member

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    Thanks for writing this beautiful article.

    Good point. I don't think I've seen it before. This is just another basic methodological error by the PACE authors.
     
  5. dangermouse

    dangermouse Senior Member

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    Thank you @Karen Kirke for writing this article. I was a nurse, I've had ME since 2006.
     
  6. slysaint

    slysaint Senior Member

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  7. Sean

    Sean Senior Member

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    Another thank you for this excellent article. :thumbsup:
     
  8. trishrhymes

    trishrhymes Senior Member

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    Excellent article. Thank you so much. I particularly like that you refute the claim of White and others that people who get worse with GET aren't doing it with a properly trained therapist. Great that you found evidence of the opposite - that the therapist run GET is worse!

    A very well researched and reasoned article, and written with severe ME - you're a star. I salute you and hope it hasn't made your health worse.

    :hug::hug::hug::balloons::balloons::balloons:
     
  9. AndyPR

    AndyPR Senior Member

  10. Karen Kirke

    Karen Kirke

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  11. JaimeS

    JaimeS Senior Member

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    I just tweeted many quotes from your article, Karen. Well-done! You really are a star, doing such a thing with severe ME. :hug:
     
  12. Karen Kirke

    Karen Kirke

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    Thank you for all the encouragement @A.B., @dangermouse (I miss working with great nurses!), @slysaint, @Sean.

    @trishrhymes, you’re very kind. Yes, writing this commentary did impact my health for a few months, despite careful pacing, extra help etc. Am back to where I was now, albeit with a bit less reserve.

    @JaimeS, thanks so much for tweeting!

    I am lucky that I am housebound but not bedbound. I do need to lie down almost flat most of the time, but I am able to walk to the bathroom, heat food prepared by others etc, so I am in a very different situation to those who are bedbound.

    Here’s to patient experience being heard and valued.
     
  13. Barry53

    Barry53 Senior Member

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    Really excellent. Draws out the crucial distinction that, even though some survey respondents do indicate a measure of improvement, a great many indicate being harmed.
    I think if a drug was found to harm more than half those it was administered to, and benefited less than a quarter, there would be outcry and legal implications. If it was known beforehand who can benefit and who not, then things would be completely different. But until that day arrives, promoting and administering it blindly is beyond contempt.

    Great article. I don't imagine enough data is available, but given your intriguing observation regarding therapist-led pacing versus DIY pacing, it would be interesting to see those two variants of ...

    upload_2017-5-12_22-45-4.png
     
  14. Wolfiness

    Wolfiness Activity Level 0

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    It brings modern medicine into disrepute that not only did they ignore us but they are waging a scorched-earth multimillion pound campaign to discredit us.
     
  15. slysaint

    slysaint Senior Member

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    It's taken 26 years for Hillsborough to be exposed and that 'only' killed 96 people.
    Our time will come.
     
  16. Daisymay

    Daisymay Senior Member

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    This is an excellent and important paper, thank you Karen. Glad you're health has picked back up.

    I wasn't aware how White had misrepresented the AfME survey, shocking but not surprising.

    This series of peer reviewed papers on JHP is really excellent.

    It is however appalling that PWME are having to write many of these papers and fight the fight, speaks volumes.
     
  17. Wolfiness

    Wolfiness Activity Level 0

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    I keep thinking about Hillsborough. I want a massive vigil/demo/party when this is over. Though my impression was that most people have believed the people of Liverpool about Hillsborough for years, no?
     
    Last edited: May 13, 2017
  18. Dolphin

    Dolphin Senior Member

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    What is your Twitter username please? I might retweet some of your messages. You can private message me if you prefer (or ignore this if you also prefer).
     
    MEMum and Luther Blissett like this.
  19. Dolphin

    Dolphin Senior Member

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    MEMum, slysaint, Solstice and 2 others like this.
  20. Dolphin

    Dolphin Senior Member

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