The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

David Tuller: My brief encounter with Prof Crawley

Discussion in 'General ME/CFS News' started by Countrygirl, Nov 20, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    Yes, that is a good point too @Sbag
     
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  2. anni66

    anni66 mum to ME daughter

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    Shows clear differences from controls
     
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  3. Sbag

    Sbag

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    aha don't always believe what Google says ;)
     
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  4. MEMum

    MEMum Senior Member

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    I have her email contact
     
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  5. Countrygirl

    Countrygirl Senior Member

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    I have a task for TeamPR if you are keen to help a child who is threatened with course of 'intensive treatment' as an inpatient if she fails to recover in four weeks from severe ME. :)

    We want to produce an information pack for paediatricians who think that ME is psychiatric and/or it is a short-term illness that will respond to GET or, as in this case, intensive therapy/physiotherapy/exercise. Refuting the claim that CBT is the 'only treatment that is proven to successfully treat ME' would also be useful.

    It would be great it you could list the documents, scientific papers, and other evidence that could be included in the pack.

    Thanks everyone. :hug::thumbsup:

    (wondering if we should start a new thread??)
     
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  6. MEMum

    MEMum Senior Member

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    Probably would be good to start new thread
     
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  7. anni66

    anni66 mum to ME daughter

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    @JaimeS - your input to this info pack would be much appreciated
     
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  8. JaimeS

    JaimeS Senior Member

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    Absolutely willing. Larger research summary is polished as of today and has the OMF label on the longer version and all. ;) I'll just have to check with them to make sure they approve it going out in a more public way.
     
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  9. anni66

    anni66 mum to ME daughter

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    many thanks. It must be
     
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  10. anni66

    anni66 mum to ME daughter

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  11. anni66

    anni66 mum to ME daughter

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    @Countrygirl - can you advise what the " trigger" was for the child' s illness - this may help tailor the response and also suggest other figures in authority who could help.
    @Jonathan Edwards could perhaps point us in the direction of useful UK contacts.
     
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  12. Countrygirl

    Countrygirl Senior Member

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  13. Deepwater

    Deepwater Senior Member

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    ATP profile tests done would need time to come back from lab even if no interpretation from Dr Myhill. Also, I see from her website that she is currently too overloaded to handle tests on behalf of new patients so her office would first need to be contacted to see if they would make an exception.
     
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  14. anni66

    anni66 mum to ME daughter

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    Yes, the standard waiting time to access tests is 6-8 weeks, with turnaround of around 3 weeks- though given the circumstances i think the access time could be negotiated.
     
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  15. Deepwater

    Deepwater Senior Member

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    From Dr Myhill's website:

    CURRENT SITUATION WITH RESPECT TO NEW PATIENTS AND ALL TEST REQUESTSUPDATE NOVEMBER 2017 - Please note that due to Dr Myhill’s extremely heavy workload the following policies will still apply:
    1.No new patient consultations are currently being accepted.
    2.‘Correspondence only’ patients (i.e. those who have had testing done through Dr Myhill but have never spoken with her at a consultation) may order repeat or other tests
    as required.
    3.All other test requests from non-patients remain suspended.
     
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  16. anni66

    anni66 mum to ME daughter

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    Initiative test . Contact and wait.
     
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  17. Deepwater

    Deepwater Senior Member

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    Indeed, as I suggested in my original post: "so her office would first need to be contacted to see if they would make an exception".
     
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  18. Dolphin

    Dolphin Senior Member

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    I think it could be very useful if this part of the talk could be released even if the intention was that the full recording wouldn't be released. If Countrygirl doesn't want to do it, I might be able to arrange that it could be released anonymously. @Countrygirl feel free to contact me on this.
     
  19. MEMum

    MEMum Senior Member

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    Maybe we have to take a longer term view of the "to who, how or when" the video, or parts of it, are released.

    (NB I have no insider knowledge re this.)
     
  20. Countrygirl

    Countrygirl Senior Member

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    It will be worth waiting for @MEMum ;)
     

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