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    My letter to the CDC concerning Kaiser Permanente still recommending GET

    This is new from last year and is from a current CMO (who was listed as one of the presenters on the recent ppt i linked to from swiss re about mental illnesses) not White. I don't think I can post the document I am referring to here as it is confidential but if you would like more info send me...
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    My letter to the CDC concerning Kaiser Permanente still recommending GET

    The CMO for Swiss Re is still recommending GET, CBT and quoting the PACE trial, oh and mindfulness!
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    Guidance for commissioners of services for people with medically unexplained symptoms - 2017

    It looks to me like they are trying to put even more illnesses into the MUS category: "On average, 52% of patients accessing outpatient services have MUS, with the highest rates relating to gynaecology clinics (66%) and the lowest rate (37%) relating to dental service" "The risks or associated...
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    David Tuller: Trial By Error: Professor Crawley’s Bogus BuzzFeed Claims - 17th January 2018

    If a teenager said I shouldnt take school records of absence as useful and should rely on what they told me about how often they attended school, I would be highly suspicious. How many parents trust that their children don't tell fibs?! Example - Did you do all of your homework? Yes, Can i go...
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    Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

    Were the diagnostic criteria thought to be important? As certain criteria are better than others and sone have been deemed to not he stringent enough.
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    Dr Myhill’s complaint to GMC about PACE authors.

    whatever happens I imagine it will generate some more press coverage
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    Format of NICE stakeholder meeting?

    Further down the line it may also be worth looking back at the legal challenge that was mounted after the last guideline was put in place. To see what issues came up so that we could keep an eye out for anything similar happening this time adtry to preempt/ deal with in case it doesnt go to plan...
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    Format of NICE stakeholder meeting?

    this is where categorising techniques would be useful - so it will be highly unlikely that cbt/get will disappear. So if they have to be mentioned then it would be betterto put caveats with them ie they coukd help with management, they are not treatments for the actual disease, they should only...
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    James Coyne: "When psychotherapy trials have multiple flaws…"

    It's great that a negative analysis has been published first by someone outside of the ME community - shows the tides are turning and that other people are now looking more at the way trials have been carried out and reported.
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    Format of NICE stakeholder meeting?

    From all of the discussions I've had with medical people (not related to ME treatment) and insurance companies the one thing they all say is that ME is a psychiatric condition (unless they personally know someone with it). I can tell them that the government recognises it as a neurological...
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    Format of NICE stakeholder meeting?

    One thing that might be worth asking about would be the acknowledgement of the WHO categorisation. When the last guideline was put together NICE decided not to categorise ME. In their web pages it says that the Group discussed it but some members wanted to accept the WHO definition and others...
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    Format of NICE stakeholder meeting?

    Maybe there could be a division in the way that "treatments" are listed - there could be one section for treatments for the actual disease (which would of course me minimal as there is nothing proven to treat it), there could be a section on experimental treatments (this could be included in the...
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    Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

    Did anyone notice this comment in the COPE agenda paper - "The author indicated that similar requests had been made in the past and that, due to the controversial area of the work, many attempts were being made to retract articles that used the data from the clinic." I wonder which papers are...
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    "Time for Unrest": ME article by Nathalie Wright

    It made me cry, it was so good at summarising the situation to date and reporting it in an easy to read article that those without ME will be able to get the picture in an informed way.
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    Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

    doh sorry - knew I would do something wrong - will remove it!
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    Esther Crawley

    They were probably completely indoctrinated by the end of it!
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    Esther Crawley

    I don't think it mentioned anything about recording the Lightning intervention sessions in any of the proposals, and what would be done regarding storage/usage of that information.
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    What is vexatious and harrassing?

    I found this video while pootling about on the interweb - While it is a mash up and not a true representation of overall presentations involved in the video, there is a clear section where Esther Crawley is presenting to the MRC (in 2010) about her trial. There are lots of things to comment...
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    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    ooh maybe you could post a reply to him which is just "STOP" written in a circle ;)
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    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    Interesting comment from EC "She added that self-reported school attendance lined up very well with the schools’ records of attendance". This means that she had the school records, if so why not use them rather than the self reporting?!
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