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RNZCGP GoodFellow Unit MedCases CPD Sept 2023: Chronic fatigue syndrome/myalgic encephalomyelitis

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by SNT Gatchaman, Sep 20, 2023.

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  1. Hutan

    Hutan Moderator Staff Member

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    Typos etc fixed, letter attached. Thanks Trish and SNT. I probably need to read through it again, but I'm not functioning well this morning.
     
    Hutan, Oct 6, 2023
    #41
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  2. oldtimer

    oldtimer Senior Member (Voting Rights)

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    Wow! I think your letter is terrific.

    As I was reading through I found a few more typos and a couple of grammar things which you may or may not think are important but I highlighted them in red in anyway.

    I'm in awe of S4ME and the people who put in so much effort and I am sincerely grateful.
     

    Attached Files:

    oldtimer, Oct 7, 2023
    #42
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  3. Hutan

    Hutan Moderator Staff Member

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    Thanks very much for picking up these edits @oldtimer. It's getting better - that was a good pick up on the recovery trajectory comment. I don't know why my spell check etc aren't working.
     
    Last edited: Oct 7, 2023
    Hutan, Oct 7, 2023
    #43
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  4. oldtimer

    oldtimer Senior Member (Voting Rights)

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    @Hutan - I read it again and noticed one more thing - "That is a subject that a much longer letter than this." It's 9 lines up from point 6.
     
    oldtimer, Oct 7, 2023
    #44
    Solstice, Trish, Hutan and 2 others like this.
  5. Deanne NZ

    Deanne NZ Established Member (Voting Rights)

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    69
    Hutan, I think your letter is great. I am very new to the forum and have not yet got my head around how to navigate it and I may have made an earlier reply that says nothing! What irks me about all this is how the “potential harms” term is minimising and it will be good to see a shift towards being more explicit about what the harms look like at an individual basis rather than alluded to in papers. Also, of no usefulness at all really other than to illicit a “yeah, that would be right”, but I was looking at Bruce Arroll’s inactive Twitter account and Phil Parker is one of his few followers.
     
    Deanne NZ, Oct 7, 2023
    #45
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  6. Hutan

    Hutan Moderator Staff Member

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    Thank you very much Deanne and welcome to the forum. For new members, it can take a while for your first posts to show on the forum. Later on, they will show up immediately.

    That's funny. I guess it would be worse if Arroll was a follower of Parker.
     
    Hutan, Oct 7, 2023
    #46
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  7. Hutan

    Hutan Moderator Staff Member

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    Thanks very much @oldtimer. Here's the latest version of the letter, I have removed references to Cathy Stephenson who, while having produced some good materials, may not want to be held up as the go-to expert for ME/CFS. If anyone else sees issues, and I'm sure there are more, maybe send me a DM? I'm going to read over it again tomorrow and then see if I can send it off.

    (see post #50 for the final version of the letter)
     
    Last edited: Oct 9, 2023
    Hutan, Oct 7, 2023
    #47
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  8. Amw66

    Amw66 Senior Member (Voting Rights)

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    Brilliant letter @Hutan. I hope it has not cost too many spoons and you both are able to rest up for a while , and it properly makes its mark .

    Thank you
     
    Amw66, Oct 7, 2023
    #48
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  9. RoseE

    RoseE Senior Member (Voting Rights)

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    @Hutan brilliant letter which leads the reader thru the issues. Thanks so much for preparing it and also asking questions around existing strategy and whether Cathy should be mentioned.
    I have raised with the GP education team at M.E. Awareness NZ. Yes please send on your own account - it will be great to have your voice and information added to efforts.
    Agree that Cathy should not be mentioned. She is very clear that she is not an expert on ME/CFS, is more of a conduit for patient-experts and reputable international guidance, and RNZCGP are very aware of her efforts in this area already.
    It might be good to forward a copy to ANZMES (and M.E. Awareness NZ) so they are aware of all advocacy efforts should a meeting take place with RNZCGP and others.
     
    RoseE, Oct 7, 2023
    #49
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  10. Hutan

    Hutan Moderator Staff Member

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    I sent a version of the letter off today, attached here. I'll delete earlier versions on the thread to prevent confusion.

    I've also sent it to people involved in the health system in my region that I know, including people linked with HealthPathways, so hopefully that will be one step towards keeping/getting these therapies out of clinical pathways generally.

    The link I had to old NLP material by Arroll that worked a couple of days ago didn't work today, but there are other documents by Arroll out there, so I found another one.

    I had my son read through the letter with fresh eyes. He commented that he was convinced from the link to the Norwegian website with testimonies. That website is a tremendous resource.
     

    Attached Files:

    Hutan, Oct 9, 2023
    #50
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  11. Trish

    Trish Moderator Staff Member

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    That's a fantastic letter, @Hutan. Do let us know if it has any effect.
     
    Trish, Oct 9, 2023
    #51
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  12. Hutan

    Hutan Moderator Staff Member

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    Just noting this
    Judges wowed by long-serving professor’s qualities of ingenuity, humility, generosity
    https://www.auckland.ac.nz/en/news/2021/06/29/judges-wowed-by-long-serving-professor.html
    This feels very much from the UK BPS playbook - very much 'establishment', effort spent pursuing accolades.
     
    Last edited: Oct 9, 2023
    Hutan, Oct 9, 2023
    #52
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  13. Solstice

    Solstice Senior Member (Voting Rights)

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    Solstice, Oct 9, 2023
    #53
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  14. Sean

    Sean Moderator Staff Member

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    :speechless:
     
    Sean, Oct 10, 2023
    #54
    alktipping, Chezboo, Trish and 2 others like this.
  15. Deanne NZ

    Deanne NZ Established Member (Voting Rights)

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    I am curious to know if you have had any response to your letter yet.
     
    Deanne NZ, Nov 30, 2023
    #55
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  16. Hutan

    Hutan Moderator Staff Member

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    I still have not had a response to my letter, despite multiple following ups including phoning the office a couple of times.

    I see that the Goodfellow Unit and specifically Bruce Arroll and Jenny Oliver ran a session on the Lightning Process in March 2024:
    https://www.goodfellowunit.org/symposium/programme/session/case-study-lightning-processr-long-covid
    Edit: saved on the wayback machine

    The Symposium was sponsored by the University of Auckland, Mercy Ascot, the Royal NZ College of GPs, Royal NZ College of Urgent Care

    Items promoting the Lightning Process and similar products in New Zealand totally swamp search engine results to a 'Lightning Process Long Covid' search.
    It feels as though we are losing this battle.
     
    Last edited: May 1, 2024
    Hutan, Apr 30, 2024
    #56
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    Shocking
     
    NelliePledge, Apr 30, 2024
    #57
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    How are people supposed to trust the credibility of medicine when they swallow stuff like this? Especially this thoroughly, it's basically an advertisement for it, full endorsement rarely just quotes straight from the marketing brochure this much because it sounds too forced and unnatural, people recoil from it. This could be followed by a seminar on astrological healing and it would feel like a natural thing.
     
    rvallee, Apr 30, 2024
    #58
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  19. Holinger

    Holinger Established Member

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    Location:
    Melbourne Australia
    Thanks for the effort. The RACGP commissioned this guy and his daughter to review current evidence base for cbt and graded exercise for cfs in 2013. The review is still on their website but I doubt they will stoop so low to tout The lightening Process.
    https://www.racgp.org.au/afp/2013/april/chronic-fatigue-syndrome
     
    Holinger, May 1, 2024
    #59
    Solstice, Peter Trewhitt and Hutan like this.
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