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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Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

Discussion in 'General ME/CFS News' started by slysaint, May 17, 2017.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    In the context of the inclusion of joint hypermobility you might want to see this post, in the MUS, PPS and IAPT thread.

    One of the authors of this chapter is presenting at the EAMP 2017 Conference, Barcelona, in July:

    http://forums.phoenixrising.me/inde...ening-across-the-uk.48710/page-29#post-851816

    Joint Hypermobility, Anxiety, and Psychosomatics — The New Neuroconnective Phenotype

    By Guillem Pailhez, Juan Castaño, Silvia Rosado, Maria Del Mar Ballester, Cristina Vendrell, Núria Mallorquí-Bagué, Carolina Baeza- Velasco and Antonio Bulbena
    DOI: 10.5772/60607
     
    Last edited: May 19, 2017
  2. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Thanks Esther. I see the Wessely one there. There's another I think that's gone, but I think it was from another account.
     
  3. jeffbulmer101

    jeffbulmer101

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    I saw this coming and wrote to AfME in March.
    My email and their reply as follows;

    Dear Sonya
    I would be grateful if you could bring my comments to the attention of your Board of Trustees.
    I hear of your upcoming merger with AYME and fully appreciate the reasons and benefits.
    Can I just make one comment or plea?
    In AfME you have an excellent medical advisory team with Dr Purdie and Prof Newton.
    I strongly suggest there is no need to supplement this excellent team.
    Can I put this another way?
    PLEASE DO NOT ADD TO YOUR MEDICAL ADVISORY TEAM.
    You would be doing AfME a disservice if you were to inherit any of AYME’s existing medical advisers.
    Many thanks in anticipation
    Jeff Bulmer
    Carer and Supporter to both Wife and Daughter who have ME/CFS

    ===========Reply=============
    Good morning Jeff
    Thank you for your email. Sonya is out of the office for the remainder of this week - but I will pass on your comments on her return.
    In the meantime I would like to advise that our current medical advisors, which you name in your email, will not change due to the merger. In case you have not already seen it, I have attached (below) a link to our website giving details along with a further link to some FAQs which confirms the above statement (on page 5 of the FAQ).
    https://www.actionforme.org.uk/news/action-for-me-launches-new-childrens-services-team/
    I hope that this answers your concern.
    Kind regards
    Xxxxxxx
     
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  4. Hutan

    Hutan Senior Member

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    @charles shepherd
    From here 400 pounds to provide clearly much needed information to paediatricians in an area that seems to be a hotbed of ME=MUS thinking doesn't seem so much. But fair enough, you are having to manage limited funds and you want to make the maximum impact.

    Given this SW Paeds Club has made a pretty egregious error with the MUPPETS title (let alone the biased content of their training day), perhaps in one of your nice calm letters or phone calls you could suggest that the club passes the hat around and comes up with the funds to ensure that all of its members get a copy of the Purple Booklet?

    Or at the very least circulates a statement from you to its members about recent biomedical research into ME. It could suggest that interested paediatricians ask for a copy of the booklet and attend the IiME conference.

    Given complaints have been made to the authorities about the MUPPETS title, the SW Paeds Club may be very pleased to have the opportunity to show that they do want to learn more about ME. Perhaps they may like to circulate information from POTSUK too.
     
    Last edited: May 19, 2017
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  5. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Yes, I think it would be a good idea to see if this so-called club might make more of an effort to make amends by actually making sure their members get a copy of the Purple Booklet, and any other necessary literature. I don't think it's too much to ask.
     
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  6. Sean

    Sean Senior Member

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    Send them Purple Books by registered mail, so they can't say they didn't get it.
     
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  7. Deepwater

    Deepwater Senior Member

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    Aren't we in the UK supposed to have established the right to freedom of religion a long time ago?
     
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  8. Sean

    Sean Senior Member

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    Last edited: May 20, 2017
  9. slysaint

    slysaint Senior Member

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    noun
    1.
    a fraudulent or ignorant pretender to medical skill.
    2.
    a person who pretends, professionally or publicly, to skill, knowledge, or qualifications he or she does not possess; a charlatan.
    adjective
    3.
    being a quack:
    a quack psychologist who complicates everyone's problems.
    4.
    presented falsely as having curative powers:
    quack medicine.
    5.
    of, relating to, or befitting a quack or quackery :
    quack methods.
    verb (used with object)
    6.
    to treat in the manner of a quack.
    7.
    to advertise or sell with fraudulent claims.

    Quintessentially Un-scientific Arrogant Callous Know-all

    [​IMG]
     
  10. taniaaust1

    taniaaust1 Senior Member

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    Maybe if anyone could, it may be beneficial for a group of ME people to protest at that event over the insult of being called Muppets, one could put on posters that example of how this is the same as if they called a cerebal palsy lecture "a day with the spastics). I once protested at a medical conference. This whole horrific thing could be used to try to get some media coverage. Most would agree this terminology isnt nice
     
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  11. slysaint

    slysaint Senior Member

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    A big question that doesn't appear to be being asked on social media is
    Why was there a 'media silence' of coverage of Esther Crawleys' presentation:
    What did she have to hide?

    eta: rhetorical question here as we can all guess but it should be asked.
     
    Jo Best, Esperanza, Webdog and 11 others like this.
  12. SamanthaJ

    SamanthaJ Senior Member

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    And is she still using the same slides?!
     
  13. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I think I brought this up somewhere at some point, but it bothered me too. I don't think it looked good. It smacks of having something to hide, and given the seriousness of ME, and her past behaviour, we really deserve to know what was said. If they are not willing to be transparent, then we have no reason to trust any paediatricians in this area. I still cannot get over the fact so many signed up to a meeting with this title. There is something fundamentally wrong, and all they're doing is hiding in their bunker with nothing more than a pathetic attempt at an apology where they mention medically unexplained conditions three times, like someone with their fingers in their ears, chanting 'la-la-la we're not listening.' It's quite clear they're not ready or willing to engage with the real science. They are on the defensive.
     
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  14. trishrhymes

    trishrhymes Senior Member

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    I think the media silence during Crawley's talk is not at all surprising. I bet she started her talk with a sob story about anti science activists attacking her and advised them not to tweet and to block anyone who had responded to their tweets so far and take down any tweets that had been responded to. Like sheep they did just that. We have the evidence.
     
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  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Ysabelle-S yes now they will be on the defensive and the danger is we could entrench their views further.

    I wonder whether the disablism angle will be taken seriously? In the public sector queries about offensive behaviour towards groups protected by the equality Act are sometimes followed up by having to attend relevant training. It would probably be their generic disability awareness training though I would think.

    Also They will probably recognise the MUPPET problem, but it is a much bigger battle to get MUS recognised as institutionalised disablism.
     
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  16. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I've never met EC but I think she must come across as an especially reasonable person. People seem willing to defend her against the views of very sick patients without questioning this dynamic.

    Although at least ME Research UK have now pulled out of the CMRC. They don't say so, but the timing implies it is related to this issue.
     
  17. NelliePledge

    NelliePledge plodder

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    naughty - to think I had my post elsewhere explaining the term uk children use for fart deleted and you've got away with this one ;);):oops::rolleyes::devil:
     
  18. MEMum

    MEMum Senior Member

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  19. lilpink

    lilpink Senior Member

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    Walks like a duck and quacks like a duck.... QED
     
  20. lilpink

    lilpink Senior Member

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    I'd be curious to find out whether or not she (or someone on her behalf) asked the audience to turn off their phones....
     
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