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Scientist joins Sussex ME Society's advisory team

Discussion in 'General ME/CFS News' started by MeSci, Aug 8, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Source: Brighton & Hove Independent

    Date: August 7, 2018

    Author: Amy Horsfield

    URL:
    https://www.brightonandhoveindepend...s-sussex-me-society-s-advisory-team-1-8593430

    Scientist joins Sussex ME Society's advisory team
    -------------------------------------------------

    A scientist from the Brighton and Sussex University Hospital NHS Trust has joined the Sussex ME Society's Medical advisory team. Dr Jessica Eccles, a Medical Research Council Training Fellow, is currently leading a research study at Sussex University exploring the brain-body interactions of people living with Myalgic encephalopathy(ME) and Fibromyalgia.

    The Sussex ME Society cares for people with ME and Chronic fatigue syndrome(CFS) that affects over 4,000 adults and children in Sussex. The neurological disorder can cause physical and mental fatigue, confusion, difficulties with memory and concentration, muscle pain, mood disturbances and vision problems.

    Colin Barton, chairman of the charity, said: 'We are delighted to welcome Dr Eccles to our team of top doctors and scientists that advise us and are pleased to be assisting with the important studies being carried out at the university into this potentially life ruining illness.'

    Dr Eccles is working alongside Dr Neil Harrison on the Sussex ME Society's advisory panel researching post-exertional malaise that is a key indicator for ME.

    To find out more about the Sussex ME Society, visit: http://www.measussex.org.uk
     
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  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    It’s quite unusual for a local support group to have several, top medical advisors? Why are they required?
     
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  3. John Mac

    John Mac Established Member (Voting Rights)

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  4. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Having read her staff info from John Mac's link, she sounds like someone I would never, ever want to see as a patient.
     
  5. Trish

    Trish Moderator Staff Member

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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    Alongside such luminaries as Esther Crawley and Alistair Miller.
     
  7. chrisb

    chrisb Senior Member (Voting Rights)

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    Is that "top" used in the sense that they have all been in, or seek access to, the big tent.
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Dr Eccles' research focuses on brain body–interactions. As an Academic Clinical Fellow she studied vulnerability to interferon induced depression, auto-antibodies in Alzheimer’s Disease, and neural correlates of abnormal skin sensations. She published the first paper to show structural brain differences in key emotional brain regions in joint hypermobility and her MRC funded doctoral work has continued to establish the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms.

    I am not too impressed by the study. They took 72 healthy people without anxiety and divided them up into 'hypermobile' and control. They found no difference in anxiety (not surprisingly) despite this supposedly being a paper about the link between hypermobility and psychiatric symptoms.

    Conveniently, 36 patients fell into the hypermobile group. But this was defined as Beighton score of 1 or more. Now, I have always had a Beighton score of 2 and I don't think anyone would suggest that less than a score of 4 would count as generalised hypermobility. So this is not a study of hypermobility syndrome.

    The main difference between groups seemed to be that the mobile ones were more sensitive to interceptive signals - signals about body positions - and they had bigger amygdalas. Is this a surprise?

    Well, a significant factor in how mobile you are is how much you do stretching physical activities. Going to the gym will increase mobility at least of spine and probably other joints a bit. And it seems that the study is really comparing rather stiff people (brighten zero) with people who are bit supple. Would one expect a difference in sense of position. I think one might well do. The stiff people were likely to be the couch potatoes.

    And what does one make of a big amygdala. clearly not that it is associated with psychiatric symptoms because the group had none. Maybe the amygdala gets bigger if you go to the gym or otherwise get to know your body a bit and keep supple.
     
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  9. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    sorry to resort to flippancy I misread this and thought her name was Jennifer Eccles and could only think of the song Lily the pink from the 60s
     
  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    more seriously the Sussex group, now AFME is tactically distancing itself from the BPS, is the patient organisation they can all point to to say "we're not against patient organisations, one of our best friends is a patient organisation leader" :sneaky:
     
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    I feel like it's a bit embarrassing for them to try to use a local group like that, although there are still examples where they seem to do so. Surely it stands out as odd to people though?
     
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  12. Trish

    Trish Moderator Staff Member

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    Maybe someone from the Sussex area who is not a fan of Colin Barton's group could contact Dr Eccles and put her in the picture about PACE etc. She seems to be new to ME research, so might be receptive to being better informed.
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    On their website measussex.org under links there is a link to 'Treatment for Children with ME/CFS' which takes you directly to the University of Bristol FITNET-NHS study page.

    Why is their website included on the ME Association site?
     
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  14. Andy

    Andy Committee Member

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    For the second edition running the MEA's members magazine includes some information from them as well.
    scan.jpeg
    Not sure it does much to raise my fun levels though..
     
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  15. chrisb

    chrisb Senior Member (Voting Rights)

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    That mentions the ME Society. I have been saying on another thread that I have never heard of such a thing. Does anyone know what it is, or was? Perhaps that is the organisation whose advice Goldberg objected to for advocating total rest. But it hardly fits the description of a" powerful self-help group". It would be typical if all "self-help groups" were tarred with this particular brush, by a significant member of the psychiatric establishment.

    So could the ME Society be a shortened form of the Sussex & Kent ME Society? That might make sense.
     
    Last edited: Aug 9, 2018
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    'orgasiation'......... not sure what levels this is referring to :giggle:
     
  17. Inara

    Inara Senior Member (Voting Rights)

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    That was my first thought, too, when I read "brain-body-interaction" - that's a nice new word for mind-body-connection or psychosomatic. (It feels manipulative.) That's how I personally understood it.
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Would be interesting to know why the ME Association was promoting Colin Barton's group without mentioning any of the problems with it.
     
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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The ME Association magazine wouldn’t tend to criticize other groups, like a lot of groups. I was disappointed to see the promotion of the group. I suspect Colin Barton submitted it but they didn’t have to include it. New-ish editor could be a bit naive.
     
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  20. Andy

    Andy Committee Member

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    My bad, the scan below is from two editions ago, so Barton's group has appeared in two of the last three magazines.
    scan.jpeg
     
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