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Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, Feb 1, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    one of the other reviewers also picked up on that
     
    Liessa, Hutan, MEMarge and 8 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Well that's a lie. Several trials, including by Chalder herself, tried GP-delivered CBT. The differences here are inconsequential, about as significant about whether or not the therapist has a funny mustache.

    Pretty sure it's not OK to just lie like that. I remember something about that... from kindergarten.
     
    Liessa, Hutan, MEMarge and 2 others like this.
  3. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I was enrolled on this PRINCE secondary trial. I still have all my documents from that time. When I started the trial, I was in a wheelchair but could walk for up to 5 minutes, was going to sewing classes during weekends and sitting up for 4-5 hours.

    At the end of the trial, I was no longer able to eat solid food, bedbound, and couldn’t speak more than a few words. I emailed the trial coordinator saying I can’t carry on with this anymore, not even on the telephone anymore, and she said something like “make sure you use all the things we taught you and keep going with it”.

    When do these results come out because I want to make sure my case was represented in this. I wonder if they just put me as a “dropped out” case but didn’t record the harm they caused.
     
    Liessa, Forestvon, JoanneS and 38 others like this.
  4. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Also one day I really, really want to sue the people who did this to me.
     
    LorsP, JoanneS, Hutan and 31 others like this.
  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Judging by the response you've had, they will probably consider it a normal setback. In their narrative, this kind of thing is normal and not harm. You're supposed to keep going and overcome your erroneous belief that you have an illness that causes exertion intolerance and then you get better (or so the narrative goes). They will probably consider you as having dropped out for some inexplicable reason.
     
    Liessa, Sarah94, alktipping and 12 others like this.
  6. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Just looked through my emails. I tried to drop out but instead they were telling me I should pause and get back to them in one months time when my “flare” had got better. Unfortunately, my “flare” has lasted nearly 3 years and counting.
     
    Last edited: Aug 2, 2019
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  7. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Ok but how can you keep going when you literally cannot speak on the telephone anymore.
     
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  8. Trish

    Trish Moderator Staff Member

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    @lunarainbows your story is heartbreaking. And makes me very very angry. When will this nightmare stop?
     
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  9. Cheshire

    Cheshire Moderator Staff Member

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    How awful... I'm so sorry.
    Their answer is so telling in that it shows how unwilling they are to change their mind about their theories when confronted with facts. They'll twist reality to make it fit their view. They can't consider they're wrong, and no proof of them being so will be taken into account.
     
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  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Are case reports of harm like this being considered in the NICE guidance review?
     
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  11. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I’m also really worried about how they recorded my data. I had to fill out a sheet every day and the main “record” was I had to focus on something that I did that day that made me really happy - and rate how good/well that made me feel. And that was like a measure of how well I was doing or something. So (because I’m actually a very positive person) I would put 10 (out of 10) every day even though all I was doing was reading a few pages of a book or walking for a few minutes or writing in my gratitude journal. Even when I was deteriorating I was putting 10 every day as I was trying to find something to make me happy as that’s what I do.

    And the other measures were questionnaires once in a while, which again only asked me things like “how good do you feel” like subjective measures and because I felt I had to answer very positively as I was told that’s what will make me better (was given a booklet saying there’s basically nothing wrong with my “hardware” and it’s my “software” that’s faulty so not to focus on things) and trying to look for silver linings etc I was putting like 70,80 out of 100, even when I was essentially bedbound.

    I don’t remember any objective measures at all.
     
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  12. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I was trying to speak to someone who would submit my case report to someone at NICE. I think at some point someone asked me to send it to NICE with a covering letter but I was so unwell at the time I couldn’t do it myself. I contacted David Tuller about it on Facebook - he didn’t get back to me at the time. I would be happy to give someone a copy of the booklet I received if they would be willing to submit it as evidence, as the booklet was so terrible, pseudo-scientific and really brainwashed me a lot.
     
    JoanneS, Sly Saint, Hutan and 20 others like this.
  13. Trish

    Trish Moderator Staff Member

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    @dave30th,. @Jonathan Edwards, @Keela Too, @adambeyoncelowe, can any of you help with this?
     
  14. Cheshire

    Cheshire Moderator Staff Member

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    Compelling concrete evidence that unblinded trials with subjective outcomes where people are told to think positively are not measuring anything about people's functioning.
    Thanks @lunarainbows for your testimony, it's very interesting and revealing and also saddening indeed.
     
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  15. Keela Too

    Keela Too Senior Member (Voting Rights)

    @lunarainbows - I find your experience horrific. There are too many of these tales. I will PM you now. Xx
     
    Liessa, JoanneS, Sly Saint and 21 others like this.
  16. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I find their advice to be utterly patronising. I wouldn't treat children to this kind of fluffy nonsense.
     
  17. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Quote from the booklet - “The best advice would be to try out this practical approach because nothing will be lost by trying but much may be gained“.

    Nothing will be lost?
    I’m in a very bad mood now

    Another thing is this trial absolutely was graded exercise by the back door. It said CBT only. But I was advised and coached on increasing exercise.
     
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  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    That's awful, it boggles the mind why people running trials like this seem to lack empathy for their patients...
     
  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    Illustrates perhaps why there is so little follow up .
    A follow up study of participants may be illuminating.
     
  20. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    There was a follow up of sorts, a few months after I dropped out.

    “I don't know if you remember me, but I'm the Research Worker on the PRINCE trial - we spoke briefly at the start of the PRINCE trial. I hope all is well with you anyway.

    I'm just getting in touch with you now as I am inviting everyone who has taken part in the trial to do a one-off qualitative interview with me (face to face or over the phone) discussing your experiences in accessing healthcare - both through your GP and the hospital, your experience of living with your symptoms and any personal/ cultural beliefs that you may have relating to symptoms. I've attached an information sheet with more information on this study.

    I've also attached the Consent form, just in case you would like to take part (please note that I would require a wet signature on it in order for it to be valid). Just so you're aware, this study is still related to the PRINCE trial, but it's also part of my own doctorate research.

    If it sounds like something you may be interested in taking part in, please do let me know and we can take things from there. Also - let me know if you would need to have your consent form posted out instead - I can do that if it's easier!

    Take care and best wishes,”

    I didn’t get anything after that. And I also didn’t reply I think.
     
    Last edited: Aug 2, 2019

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