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UK nursing students warned about PACE! Anecdote only but very encouraging.

Discussion in 'General ME/CFS Discussion' started by TiredSam, Apr 2, 2017.

  1. TiredSam

    TiredSam The wise nematode hibernates

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    Haven't been on the forum so much lately - I've got 6 pages of "Recent Threads" I haven't looked at yet - can everyone please stop writing until I've had a chance to catch up?

    Anyway, had to come on and share this - I've just been having a Sunday morning chat with my sister in England, who is doing a degree course in nursing and paliative care. For her course on evidence based clinical practice (don't quote me on the exact names of these courses) she has to choose a paper to critique. Not expecting her to have even heard of it, I said "Have you heard of the PACE trial?" Her reply was "Oh my God yes, our lecturer talked about that, and the MMR scandal."

    How satisfying to know that the PACE trial is now being mentioned to undergraduate nursing students in the UK in the same breath as the MMR scandal. Who knows how else word is spreading?
     
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  2. Esther12

    Esther12 Senior Member

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    I've just posted in another thread about the danger of giving too much weight to anecdotes. This anecdote made my heart soar.
     
    Last edited: Apr 2, 2017
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  3. aimossy

    aimossy Senior Member

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  4. JohnCB

    JohnCB MEow

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    This immediately made me wonder where she is training. Of course there are a number of centres for nursing education. However I thought of Prof Keith Laws, who has written critically of CBT and been quoted on PR, whose home is University of Hertfordshire which has a lot of nurses. Just connecting random thoughts.
     
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  5. TiredSam

    TiredSam The wise nematode hibernates

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    I don't know which institution she's training at, I'll ask her. I think I'll also ask her to go and shake her lecturer's hand and thank them from me.
     
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  6. Invisible Woman

    Invisible Woman Senior Member

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    You can add all our thanks I think!
     
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  7. aimossy

    aimossy Senior Member

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    It might be prudent to not mention names or places regarding this maybe? They may get targeted by (cough PACE) authors and complained about?
     
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  8. TiredSam

    TiredSam The wise nematode hibernates

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    I had the same thought. I know there are BPS spies monitoring this forum, so even if I know where this course is being held, it'll probably be more fun to keep it under my hat. I hope it's right under their bloody noses though :cool:.
     
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  9. belize44

    belize44 Senior Member

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    That was very gratifying to read!:balloons:
     
  10. Dechi

    Dechi Senior Member

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    Wonderful to hear, thank you !
     
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  11. Jenny TipsforME

    Jenny TipsforME Senior Member

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    A friend of mine taught about PACE in an ethics lecture after coming to the MillionsMissing protest. That was for education students.

    I think it is being used in different places, either as an example of bad science or to open up debate. Actually it is a great resource in terms of showing why research methods matter. I found research methods deadly dull when I was at uni.
     
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  12. ahimsa

    ahimsa Sick since 1990

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    Thank you @TiredSam ! Your little story was like a small ray of hope for me! :):heart:
     
  13. BurnA

    BurnA Senior Member

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    You could also send them on a bit of a wild goose chase ;)
     
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  14. Solstice

    Solstice Senior Member

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    I heard it was someone going by the acronym PDW:heart:QMUL.
     
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  15. KME

    KME

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    I'm interested to know the way in which the PACE trial was mentioned. Was the PACE trial mentioned as an example of when the evidence base is misleading or as an example of when patients resist (supposedly) evidence-based treatment? One would make me happy, one would make me sad.
     
  16. TiredSam

    TiredSam The wise nematode hibernates

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    I'm assuming, seeing as it was mentioned along with the MMR scandal, that it was given as an example of a pile of crap and the way not to do things. I may find out more at some point.
     
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  17. dangermouse

    dangermouse Senior Member

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    ;) So, that news is so far one of the brightest parts of my day! Thank so much for sharing this @TiredSam
     
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  18. KME

    KME

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    Yes, I hope so. I ask because the MMR/vaccines issue is often talked about by health professionals as an example of parents/patients not complying with evidence-based treatments, not just as an example of a poor/fraudulent study. This is the spin that I see the PACE authors and people like Esther Crawley trying to put on the GET/CBT debate - that it's an example of patients not complying with evidence-based treatments because of misinformation. For example, Esther Crawley wrote in her blog about encountering criticism of her trial of GET in children with ME/CFS (which I do not recommend):

    "This has made me reflect on why we do research. And whether I should follow countless other CFS/ME researchers and leave the field. I talked to a famous researcher who experienced something similar when he advocated children should be vaccinated against preventable illnesses. Why do you continue I asked him? His answer? “Because it is right”. And it is right that we should continue doing research in important areas to develop effective treatments for children who suffer." (I added the bolding.)
    http://www.nihr.ac.uk/blogs/doing-what-is-right-in-a-controversial-field/5370

    and Peter White's article called "If my team's research on ME is rejected, the patients will suffer" (again, I don't recommend it):
    "Whichever way the data is viewed, patients get better results from CBT and GET – both confirmed as safe – than they do from pacing or medical care alone.
    This whole affair is perhaps saddest for the patients themselves, whose suffering has been neglected for far too long. However, there is hope. First, the important message for patients is that it is possible to get treatment that will help them improve and for some to recover. Second, we agree with campaigners that we need more research into the causes and treatments of CFS/ME. However, if their campaign puts people off trying CBT and GET, it will be the patients themselves who will suffer the most."
    https://www.theguardian.com/comment...tients-suffer-put-off-treatments-our-research

    @Jonathan Edwards wrote a great comment on that Guardian article
    "Unfortunately, this is a totally misleading analysis of the situation. Independent scientists are now more or less unanimous that the PACE trial is worthless because of basic design flaws. The recent reanalysis by an independent group was based on the PACE authors' original endpoints and it shows no significant evidence for recovery due to specific therapies. The independent review in the recent Freedom of Information tribunal confirmed that the PACE authors' claims that criticism of their trial was an attack on science were groundless. I have become involved in this as an independent outside academic and I am very clear that the criticism are entirely justified and often too lenient.

    Jonathan Edwards
    Professor Emeritus
    Department of Medicine University College London"

    It is really fantastic if undergraduate health professionals are being educated about the PACE trial's flaws.
     
  19. Barry53

    Barry53 Senior Member

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    No need ... they are on one of their own! :p
     
  20. TiredSam

    TiredSam The wise nematode hibernates

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    It was the happy one. The main subject was how to critique a published paper, looking at the choices the authors made and how else they could have done things. Mostly about the MMR scandal, how such a poor paper can be picked up by the media, blown up, and the consequences it can have. PACE was only mentioned in passing, as were other papers.

    It was at a random university in the UK, not near Hertfordshire and nowhere that's come up in discussions on this forum so far.
     
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