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

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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.
 
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A.B.

Senior Member
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3,780
Thanks for writing this beautiful article.

The PACE trial, however, did not report the proportion of patients using pacing as a self-management strategy in each treatment arm either at onset or at conclusion of the trial. If a large proportion of patients randomised to APT in the PACE trial were already pacing prior to trial commencement, as patient surveys suggest might have been the case, then those patients may already have improved as much as they were going to from pacing. So, for many or perhaps most patients in the APT arm, the PACE trial may have been assessing the efficacy of the non-pacing elements of APT.

Good point. I don't think I've seen it before. This is just another basic methodological error by the PACE authors.
 
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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:
 
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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.
 
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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.
GET courses implemented by therapists specialising in ME/CFS resulted in considerably more harm (57% of patients worsened) than good (20% improved; The ME Association, 2015: 32). A therapy doing markedly more harm than good to patients, even when implemented by specialists, is dangerous to patients.
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 ...

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Daisymay

Senior Member
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754
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.