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Australian study: neuroimaging in adolescents with ME/CFS

Discussion in 'Latest ME/CFS Research' started by Hutan, Aug 19, 2015.

  1. Hutan

    Hutan Senior Member

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    http://www.meaction.net/2015/08/19/australian-research-into-mecfs-in-adolescents/

    AUSTRALIAN RESEARCH INTO ME/CFS IN ADOLESCENTS
    August 19, 2015
    NEUROLOGICAL BIOMARKERS IN PAEDIATRIC ME/CFS
    ME Research UK is contributing nearly $100,000 (£46,000) to a study looking for neurological biomarkers in adolescents with ME/CFS.

    Murdoch Children’s Research Institute, at The Royal Children’s Hospital in the University of Melbourne, Australia is conducting the study.

    It will study 25 adolescents diagnosed using the Canadian Clinical Criteria adapted for paediatricians and 25 matched healthy controls.

    Both groups will have baseline functional neuroimaging, followed by 90 minutes of structured effortful thinking and learning activities (similar to school work), then have another brain scan.

    Neuroimaging techniques have rarely been applied to understanding the impact of ME/CFS on the function of the developing brain. Now Dr Sarah Knight and colleagues in Melbourne will examine how the brain and its underlying functioning responds to mental exertion in adolescents with ME/CFS, using a variety of neuroimaging techniques.​


    I'm so pleased to see this. Dr Sarah Knight is the person running another research study titled 'Understanding CFS' in children and adolescents that had the strange survey questions such as 'do you chew or smoke tobacco an hour or less before bedtime?', 'do you repeat numbers or words in order to stop bad things happening' and, in the parents' survey 'do you give your child treats when they are sick?'. My son is a participant in this survey.

    There were no questions in this survey about PEM or a number of other common ME symptoms. And, given the participation agreement did not give the researchers any access to medical records and in any case the single consultation my son had at the fatigue clinic was quite limited, they can't be sure that the participants meet any criteria for ME/CFS. The information participants were given for this survey made no mention of any specific criteria, so it's great to see the reference to the CCC for the neuroimaging study.

    Our impression of the Royal Children's chronic fatigue clinic late last year was that it is not helpful. The treatment involves a residential rehabilitation programme with exercise and CBT (not offered to my son because he was planning to return to school at the time of the appointment). It does seem that there are two senior clinicians who have different views about ME/CFS which may explain the seemingly schizophrenic approach to research (neurological biomarkers as well as surveys on psychological and behavioural issues).

    I've been pestering the team there and Sarah Knight specifically as well as the hospital ethics person about the inadequacies of the research survey throughout this year, with little response.

    Anyway, will be interesting to see the outcome of this latest study in due course.
     
  2. A.B.

    A.B. Senior Member

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    That they are even considering this as causal factor is insane.
     
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  3. Hutan

    Hutan Senior Member

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    @A.B. There is a slight chance that the researchers are actually expecting to show with the survey that the psychological and personality defects of children with ME/CFS and their parents are not different to that of healthy children and their parents. We can't tell from the information given to the participants what the underlying hypothesis is and we were told we would have to withdraw from the study before they could tell us.

    The fact that they have a rehabilitation clinic focussed on correcting bad habits of mind and movement makes it more likely that the survey is looking for such problems.

    A person with ME/CFS drafting a questionnaire titled 'Understanding CFS' probably could come up with some questions a bit more useful than 'are you afraid of the dark?'.
     
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  4. Effi

    Effi Senior Member

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    Good job on pestering them @Hutan :) Even if they didn't respond, maybe your actions might have them thinking about correcting THEIR OWN bad habits of the mind. One can hope, right? ;)
     
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  5. Hutan

    Hutan Senior Member

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    @Effi, They had the neuroimaging study planned when we saw them late last year so I can't claim any credit for that. But yes, hopefully each letter and discussion with the clinic chips away at the prejudices and encourages change.
     
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  6. allyann

    allyann Senior Member

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    Very disturbing indeed. Have you spoken to Emerge about this study's questions @Hutan? Here's hoping your assumptions are right.
     
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  7. Hutan

    Hutan Senior Member

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    Hi @allyann, yes I did send an email to Emerge back approximately in February of this year. I thought they may be able to help advocate with the Royal Childrens team (eg to try to get participants better characterised as having ME (CCC criteria) or chronic fatigue from other causes so results could be reported by each illness group ) and also find out more about the underlying hypothesis. I never heard back from them. They rely on volunteers and may just have been busy when the email came in.

    I might follow up again with Emerge as we have just done the 6 month Understanding CFS questionnaire and it's clear the survey is rolling on with no improvements. And my two emails to Sarah Knight following the 6 month survey have not been answered.

    (I hope you are feeling better)
     
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  8. allyann

    allyann Senior Member

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    I know they have cut down on fulltime staff so they may not have the person power. I have yet to find a physician in Melbourne that doesn't subscribe to the CBT/GET program or is the opposite and charges 1000s for testing/supplements.

    On the plus side when I had my colonoscopy last week, the anaesthetist was well aware of ME/CFS being a 'real illness', immune system related and the glandular fever connection to CFS. He lectures in Anesthesia and said that he gets his students to look at a POTS case study as part of his course as he is aware of the difficulty it can cause with anesthetic. I go back in on Saturday for a laparoscopy, so hoping I get him again. My General Surgeon is also aware of ME/CFS being a real and debilitating illness so I think we have come a long way already.
     
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  9. Effi

    Effi Senior Member

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    Wow! Impressive! Finally feels like we're getting somewhere, right? :)

    PS hope you feel better!
     
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  10. Hutan

    Hutan Senior Member

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    @allyann; @Effi I saw my GP today, who has been lovely and was happy to give me referrals and to print out papers on obscure infections for us both to read.

    And she had a medical student sitting in with her. I mentioned to the student, while my GP was out briefly, that medically unexplained symptoms didn't have to equal 'crazy person'. And the student genuinely agreed, indicating an understanding that there is much to be found out yet.

    So, together with the funded research announcements, a good day. Yes, much cause for hope.
     
    Last edited: Aug 20, 2015
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