Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Royal Society of Medicine (UK) meeting on ME/CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 3, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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  2. Sasha

    Sasha Fine, thank you

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  3. Countrygirl

    Countrygirl Senior Member

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    I hope it will be possible for us to receive feedback from this meeting.

    Apart from Dr Charles Shepherd and Lady Mar, the remaining speakers do not fill me with any degree of confidence.
     
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  4. eafw

    eafw Senior Member

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    Charles, do you know if anyone from the UK charities or research groups is attending BACME next week ? Would be interesting to know what goes on there and compare and contrast the two groups.
     
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  5. Roy S

    Roy S former DC ME/CFS lobbyist

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    The politics of ME/CFS
    Countess of Mar, Member of the House of Lords, All Party Parliamentary Group on ME and Chair of Forward ME Group of Charities
     
    I would like to have a transcript of her remarks.
     
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  6. Esther12

    Esther12 Senior Member

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    Good luck Charles. I hope that you're able to spend some time on the specifics of why patients are angry with the way PACE has been spun, the importance of informed consent, and the harm done by manipulation and the mispresentation of criticism of BPS approaches. It's important not to let them get away with this stuff.
     
    Last edited: Mar 3, 2015
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  7. Esther12

    Esther12 Senior Member

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    PS: Would be fun to slag off some of the BMJ's coverage in front of Godlee.

    Their claim that PACE showed CBT and GET cured "only" 30% of patients, followed by their pretence that patient anger at the way PACE results were spun was driven by anti-psychiatry did a lot of harm.

    It would be risky to bring this up, but @maxwhd recently pointed out that their example of a harassing e-mail was actually taken from a website, with the 'threatening' part being a quote of Bob Dylan's pacifist protest song 'Masters of War' which had the reference removed in the BMJ.

    The website is from Maartens Maartensz, who used to post here, who I didn't have much respect for and who (I think) got banned [I thought wrongly], and he does say he thinks Wessely is 'an evident Dr Mengele in human form'.

    [​IMG]
     
    Last edited: Mar 3, 2015
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  8. charles shepherd

    charles shepherd Senior Member

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    No - I don't know anyone who is going to the BACME conference

    I am not a member of BACME - so will not be going
     
  9. xrunner

    xrunner Senior Member

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    Dr Murphy was one of the drs that initially diagnosed me. I remember her as a caring, thorough and understanding dr.
    She prescribed all sorts of tests to rule out any obvious illness and eventually suggested trying cbt and graded exercise (and informally a couple of alternative treatments as well) but only if I wanted to, which I did.

    The dr, she suggested for cbt and the rest was also quite good and made it clear to me that what I had was immune related and not just in my head.

    Incidentally, at the time, both mentioned that a possible cause of symptoms in ME was an immune/cytokines dysregulation. That was eight years before this recent Lipkin's paper.
     
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  10. Cheshire

    Cheshire Senior Member

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    Dr Gabrielle Murphy seems to have a classical BPS view of ME.
    http://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Myalgic-Encephalomyelitis/dp/1855755378

    You can look inside the book. To explain we don't need to know what triggered our illness, she takes the example of a broken leg. Ignoring the circumstances of the accident doesn't prevent the physician from curing the leg... Wessely has his own car metaphor, where knowing the kind of car that caused the accident is pointless. I recently came across a bird throwing a stone metaphor on a thread...
    BS
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    From Rational Wiki: Analogies and metaphors can be very useful to explain things to people and often play an important part in learning. However, because of the prevalence of false analogies they're much less useful in making arguments.

    Specious argument from people with power and authority thinking their P&A protects them from reasonable scrutiny. :rolleyes:

    Nigel Hawkes seems to gone off the radar since 2012. He was (at some point) the director of an organisation called 'straight statistics'.
    Go figure. :eek: :rolleyes:
     
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  12. eafw

    eafw Senior Member

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    OK, was hoping someone from one of the charities or support groups would be there - you don't need to be a member to attend - and these people inform the practitioners that many of us have to deal with so it is useful to know what they're up to.

    Hopefully your RSM conference is productive and gets good press anyway.
     
  13. A.B.

    A.B. Senior Member

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    Speaking of analogies, I think comparing the PACE trial to homeopathy is a pretty good one. Any treatment can look effective if poor research methods are applied. In the PACE they even intentionally introduced bias in two ways (by telling patients the treatment was highly effective, and by training them to change their views which will undoubtedly affect questionnaire answers).
     
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  14. Aurator

    Aurator Senior Member

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    Yes, from what I can see in the preview, the book is a classic platitude-filled attempt to heap the burden of responsibility for remaining ill on to the patient; an approach that has done much damage over the years.
    That overworked and specious broken leg analogy, clearly designed to pour cold water on aetiological investigations (including funded biomedical research) wants putting down once and for all. When you have a broken leg the doctor treating you doesn't need to see the cause because he can see what is wrong with you; with ME he has no idea of the cause and no firm idea even of what is wrong with you.
    This gives me hope that Dr Murphy may have more oil in her can than the book preview allows me to suppose.
    Now those two underlined words do not augur well for the triumph of sanity over cozenage.
     
  15. xrunner

    xrunner Senior Member

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    I had two lengthy consultations with her. What I wrote is only based on what she told me during those consults.
    Of course she wasn't able to help in terms of suggesting treatments other than those that are legitimate under the NHS umbrella. She wouldn't last 5min longer in her job if she did things any other way.
     
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    I read that as 'straight sadistics'. :jaw-drop:
     
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  17. Mark

    Mark Former CEO

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    Just to clarify, in fairness to him, that Maarten was not banned from Phoenix Rising. He left of his own accord. I think all of his posts here were then deleted at his request, although this is not a policy we would follow in similar circumstances today. Forum moderation has changed a lot since those days - much for the better, in my opinion.

    As a general note it's best not to speculate about whether/why people may have been banned from, or left, Phoenix Rising. They are free, of course, to comment on this themselves on their own blogs or elsewhere, but it is our policy never to comment on banned members and the reasons for their ban, out of fairness to them, because they are no longer able to answer here to anything we might say. Similarly we would not confirm to other members that a member has been banned...but I'm making an exception in this case to clarify that Maarten was not banned and I would ask that members avoid similar speculation in future to avoid putting us in a difficult position.
     
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  18. Esther12

    Esther12 Senior Member

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    Thanks Mark. I edited my post.
     
  19. Aurator

    Aurator Senior Member

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    Listening to her presentation here (particularly the last half) is reassuring as well as very informative. She clearly has much she can contribute to research and potentially the treatment of CFS (or post-infectious fatigue, as she calls it near the end). If only the government/NICE/NHS would give her the resources to get on with it. Instead she's in the position of a heart surgeon having to perform operations armed only with the tools that come out of a Christmas cracker.
     
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  20. Battery Muncher

    Battery Muncher Senior Member

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    Thanks for bringing this to our attention, @charles shepherd.

    I'm grateful for your continuing advocacy for us over many years. Like others, I hope you will be successful in bringing the findings of the Lipkin/Hornig study and the IOM report to a critical audience.
     
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