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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Crawley: How to deal with anti-science BRS2017

Discussion in 'General ME/CFS News' started by Cheshire, Apr 28, 2017.

  1. AndyPR

    AndyPR Senior Member

    This Week In Virology podcast with David Tuller
    http://www.microbe.tv/twiv/twivs-tuller3/
     
  2. slysaint

    slysaint Senior Member

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  3. slysaint

    slysaint Senior Member

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    Is/was this part of MAGENTA?

    http://apcp.csp.org.uk/chronic-fatigue-syndrome-diagnosis-management-symptoms-children

    "Caroline Grayson is a Consultant Paediatrician at the Great North Children’s Hospital (GNCH), Newcastle upon Tyne. Her job combines both acute and community paediatrics with close working with different members of the multidisciplinary team. She is also Named Doctor for child protection for the Trust."

    "GNCH will be one of the pilot sites for a research trial led by Dr Esther Crawley , Consultant Paediatrician in Bath and Bristol looking at Graded Exercise Therapy in young people with CFS/ME compared to activity management and recruitment is expected to commence shortly."

    "Caroline is grateful for the support and advice she has received from Dr Esther Crawley"

    :vomit:
     
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  4. UKmum

    UKmum

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    Looks like it is part of Magenta- with help from specialist physio

    Jackie Young is currently the Operational Lead for Community Paediatric Physiotherapy and has been qualified as a physiotherapist since 1983. She specialised in paediatrics in 1992 working in Newcastle community paediatric services. She developed through the ranks to become the service manager in 2005, at the time for both physiotherapy and occupational therapy. This has given her extensive knowledge and experience in dealing with children with disabilities, strategic visions, service developments, working with partner organisations, and currently runs services that are both local and regional across the north east.



    The community service is part of the Newcastle upon Tyne Hospitals NHS Foundation Trust. As a manager she has been able to support a strong research portfolio within her team and be part of new developments within the care of children with disabilities. Developing new services and treatment modalities, supported by medical teams.



    Due to professional and personal experience she has developed a special interest in children with chronic fatigue and is currently developing the service along with Dr Caroline Grayson. They are hoping to become well established and to provide high levels of care and support for these young people who can have quite difficult times, and where recovery can be lengthy, particularly with the wrong approaches.



    She is also going to be working with the Bath research team, along with Dr Grayson and Dr Esther Crawley, as Newcastle is one of the participating centres in the MAGENTA Trial, looking at GET therapy vs activity management, randomised control trial this year.

    http://apcp.csp.org.uk/management-children-chronic-fatigue-syndrome
     
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  5. Esther12

    Esther12 Senior Member

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  6. Valentijn

    Valentijn Senior Member

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    What a bunch of misleading bullshit. Can we complain to Bristol about their website deliberately misinforming people by leaving out key information regarding GET? In huge patient surveys, most of us report it causes harm, and Cochrane didn't have satisfactory data to establish if there's harm or not, so of course they couldn't conclude that it's harmful.
     
    Last edited: Jun 7, 2017
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  7. Luther Blissett

    Luther Blissett Senior Member

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    I wonder if a complaint to the Child Protection Board is valid?
     
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  8. slysaint

    slysaint Senior Member

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    This is why EC goes to great lengths to make out that 'Paediatric ME', or 'Adolescent CFS' or whatever she wants to call it at the time, is not the same as the adult variety.
    What few of 'them' seem to have picked up on is that this is largely down to her means of diagnosis.
     
  9. Revel

    Revel Senior Member

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    Guess I'm still waiting to recover from my 'Adolescent CFS' then, even though I'm now 52, since nothing's changed for me so far. Did I miss the memo, at what point does this illness morph into the 'adult variety'? :confused:
     
  10. Valentijn

    Valentijn Senior Member

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    When the kids manage to get the hell away from Crawley, I suppose :p
     
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  11. lilpink

    lilpink Senior Member

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    Ditto.
     
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  12. Countrygirl

    Countrygirl Senior Member

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    I have been in conversation with a parent who is concerned that she is being pressurised against her will to enter her child for the FITNET trial. Perhaps they are finding it difficult to recruit their desired number of victims/participants.

    I also recall reading in the study protocol that a parent of a child who fails to improve will be liable to investigation, a possibility of which the parents should be aware if they participate, but they are not, it appears. I have tried to find the document on line but it seems to have disappeared. A few months ago, based on the statement threatening the investigation of parents I wrote this short paragraph in a letter of concern:

    We [a group of ME patients] are very concerned that severely ill children who fail to improve or deteriorate are re-diagnosed with Pervasive Refusal Syndrome at the instigation of Dr Crawley and subjected to highly damaging treatment resulting in serious and prolonged and potentially permanent deterioration while legal proceedings in some cases are taken against parents[15]. Indeed this possible scenario is inbuilt into the FITNET trial, an outcome of which future participants may not be aware. This is reprehensible.

    The following is the text from the leaflet for that trial which participants are given which might be of interest. I have highlighted some of the statements that give concern.


     
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  13. Barry53

    Barry53 Senior Member

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    How about the possibility they feel bl**dy ill because, if they really do happen to have true ME, the exertion has tipped them over?
     
  14. user9876

    user9876 Senior Member

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    From the leaflet that @Countrygirl quoted
    This seems to imply that they don't have a way to monitor the safety of the intervention because they are saying if you feel unwell don't tell us tell your GP.

    Of course they will then say it is safe because they have not looked for harms. Like they quote the cochrane review as saying GET is safe when most of the trials it quotes don't look at this and whilst the cochrane paper gives soundbites suggesting GET is safe they also have caveats around lack of information.
     
  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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  16. jaybird1

    jaybird1

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    Q: I have read that GET is harmful. Is that true?

    A: No, so long as it is provided by appropriately trained healthcare professionals, as it is in this study.

    That's just not true; I was made worse by GET from one-to-one care by the person who trains the NHS clinics!!! You can't get anymore appropriately trained than the one who wrote the flippin' guidelines. And it failed miserably and I was hung out to dry. This trial is a tragedy waiting to happen.
     
  17. Countrygirl

    Countrygirl Senior Member

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    Hi @Jenny TipsforME :)

    As I mentioned above, I read it last December in the study protocol which was online. I have spent some time searching for the same document today and it appears to have been vamooshed. I can only find very much abbreviated documents of FITNET. Maybe further investigation would unearth that version of the study protocol, but I don't have time right now and I am beginning to think, after spending so much time searching for it, that it may have been removed from the 'net or altered.
     
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  18. Countrygirl

    Countrygirl Senior Member

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    I am sorry to hear that you were harmed, @jaybird1 .

    Could you tell us more if you are up to doing that?,................. but not to worry if you don't want to.

    Did you report it?
     
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  19. jaybird1

    jaybird1

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    There's another thread here about a webinar by Jessica Bavinton on the use of GET; I've explained more over there. As it was provided by my work health insurance, and funding was cut as i didn't improve there wasn't anyone to complain to! That was a couple of years ago now sadly.
     
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  20. PhoenixDown

    PhoenixDown Senior Member

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    Objective outcomes should be compulsory.

    Interesting, let's hope she doesn't generalize the results to the severely affected.
     
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