Dr Myhill’s complaint to GMC about PACE authors.

Discussion in 'General ME/CFS news' started by Robert 1973, Jan 15, 2018.

  1. Ariel

    Ariel Senior Member (Voting Rights)

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    Does anyone have any sense of whether this will go anywhere? Seems unlikely; is anyone helping her with her efforts? I admire her determination but she seems a lone figure. I hope she is getting good advice somewhere, as things have seemed somewhat impractical in the past.
     
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  2. Andy

    Andy Committee Member

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  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Someone has to do it and Sarah has had LOTS of experience with the GMC! Being targeted, and being the complainant- Don't forget she took the original GMC complainer "Jonesie" from Queens Romford himself before the GMC for fitness to practice!
     
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    My understanding is that when the GMC (General Medical Council) decided not to investigate [her complaint against] the PACE authors Dr Myhill asked them what evidence this decision was based on.

    When the GMC refused she put in a freedom of information request which they then refused on the grounds that it would breach the PACE authors’ privacy.

    Dr Myhill then appealed this on the grounds that the relevant information was presumably published articles that were already in the public domain and revealing such could involve no breach of privacy.

    This press release was triggered by the Information Commissions upholding the GMC’s decision not to disclose what evidence they used to decide not to take any action against the PaCE authors.

    [added]
     
    Last edited: Apr 18, 2021
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  5. Andy

    Andy Committee Member

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    Thanks for the explanation. To be honest, I don't see the point in it, and think the time, energy and money could be better spent elsewhere, but also appreciate that some in the community think this is great.
     
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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    There are problems with her that have led to complaints. She has made misleading claims in the past and I think of her as a bit quacky. I don't think she's a good person for us to have involved in PACE advocacy, but that's not to say I disagree with everything she does. I can see some plus points to what she's doing here.
     
    Last edited: Apr 18, 2021
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  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I had reservations about some of Dr Myhill’s grounds for the original complaint to the GMC, but do think that it is worrying that the GMC should be able to reject out of hand undertaking any investigation of the complaint and then refuse to say what their decision to do this was based on for apparently spurious reasons.

    The implication from Dr Myhill’s camp is that there was no objective scientific or ethical reasons behind the refusal to consider her complaint, rather it was a self interested closing of wagons around eminent colleagues.
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    So this answers the question that follows "first do no harm": or else what?

    Or else, carry on, you're doing great!
     
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  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I challenge anyone to find one complaint from any of her patients. Complaints have been from the medical profession who do not welcome anything outside their (NHS) orthodoxy.
     
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    Some things outside of the orthodoxy are worth complaining about. The mitochondria test she has been selling failed to be replicated, and a lot of the advice she gives on CFS seems too strong and poorly supported. Things in the NHS may be so routinely terrible that she can seem better than many others doctors, but that's not saying much imo.
     
    Last edited: Apr 19, 2021
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  11. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    But at least she is willing to give advice.... and she gives patients some control, chance of symptom relief and hope.

    It's not just that ''things' in the NHS may be so routinely terrible'-ME and CFS Services are non existent or inadequate......or are filling the pockets of these private Social Enterprises arrangements....

    16 years after the NHS Long Term Conditions roll out of 2005- things have gone steadfastly backward in the NHS. There is less in recent years than 20/30 years ago ( n East Anglia for one).

    Those brave 'orthodox' NHS doctors, like the late Alan Franklin & Terry Mitchell; Durrant Peatfield, Gordon Skinner persecuted; Nigel S - persecuted, Sarah, Basant and Jonathan K silenced within orthodoxy NHS ....

    So what do you suggest patients do?

    What do you suggest mothers accused of FII do when they make a fuss so that their children are either abandoned or subject to institutional abuse?

    I have followed SMH for 18 years and yes, she is not perfect, but who else is so devoted to helping as much by fighting this iniquity in the patient interest?

    My husband has been enormously grateful for her (free) literature which has empowered him to understand and make his own choices.
     
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  12. Hutan

    Hutan Moderator Staff Member

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    But that's not good enough. I'm sure the BPS crowd think that they are giving patients some control and a chance of symptom relief and hope. But their ideas don't work. Hope based on poor advice can harm. We can't fairly criticise the BPS proponents for pushing unevidenced treatments and hypotheses while praising other doctors making money from treatments and ideas with a similarly poor evidence base.

    It's a lot more useful for doctors to face up to the fact that we currently don't have any evidence-based treatment, and push for better fundamental research and decent studies of any treatment that they think might be useful.
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    It looks like David Mark’s post is substantially the press release on Dr Myhill’s website which also contains her archive of materials relating to the whole progress of her complaint to the GMC (see https://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors )

    I have not yet re located her original complaint (down to my inability to locate specific things in longer lists), which at the time I was uncomfortable with because though it contained very important points it also contained ideas that were less reasonable potentially giving the GMC grounds to throw the body out with the bathwater. Despite my personal reservations, undoubtedly Dr Myhill undertook a lot of work and gathered a lot information in the compilation of her complaint.

    However, we continue to have no evidence on why the GMC chose to turn its back on this particular baby which remains in now very cold and very murky bathwater.
     
  15. Kitty

    Kitty Senior Member (Voting Rights)

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  16. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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  17. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    Back in 2012 Sarah Myhill had me on over £200 worth of her supplements and they didn't improve my health one iota. No doctor would accept her tests as valid proof of illness.

    Just before I was sectioned in 2014 I called Myhill's office nearly in tears, her secretary told me that may be my sectioning would be for best if they did some tests and found something. They had no clue about severe ME. I was made permanently worse by the sectioning.
     
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  18. Milo

    Milo Senior Member (Voting Rights)

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    I am so very sorry @DigitalDrifter it sounds horrible. People turning to fringe practitioners has been problematic for our disease. It has meant that regular physicians never learnt really about ME, and that patients have been at the mercy of said practitioner’s pet theories, which for the most part have never been validated by science.
     
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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  20. Ariel

    Ariel Senior Member (Voting Rights)

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    Unfortunately Dr Myhill has gotten into increasingly sketchy territory with the things she recommends. In around 2009 (I believe), she did really help me - part of the reason was that she prescribed "normal" things to help me with sleep issues and so on, and was not talking about some of the things she is talking about now (although she was always too speculative). At times she was one of the only places to turn to and I am grateful for that. It makes her forays into sketchy areas all the more frustrating and disappointing. At the time she was able to liaise with my GP who ended up helping me more due to this. I will be forever grateful for all of that and I cannot emphasize that enough. However, I wish she had stuck to a more simple, less speculative approach and hadn't gotten herself involved in self-sabotaging political disputes she is not equipped to handle or win. It did her patients a disservice, especially those with no other medical support, as she is no longer prescribing. I do not think she is a good representative for ME/CFS patients currently due to her support for fringe ideas, and also due to her lack of political skills. She is also very dogmatic and does not appear to think strategically. I say this as a (former) patient with an extremely positive experience of her clinically. (You did have to ignore a lot of rubbish.) I just wanted to contribute that she really helped me at the time and so this is hard to witness, as has her descent into fully fringe ideas. :(
     
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