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UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

Discussion in 'General ME/CFS News' started by Sasha, Oct 2, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Is this a first?

    This link is courtesy of the MEA on FB, and is a job ad for a new consultant:

    https://www.jobs.nhs.uk/xi/vacancy/747209457f9f1ce6f8860805e6e7b78e/?vac_ref=913924710

    :balloons::balloons::balloons:

    Lucky Suffolk and Norfolk! I wonder how this came about?

    @charles shepherd, how can we get this happening nationally?
     
    Last edited: Oct 2, 2015
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  2. Sasha

    Sasha Fine, thank you

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    My only worry now is whether there are any doctors who are qualified! Who has got a proven track record in patient-supported (presumably not psychiatric, then) ME research and proven expertise in dealing with ME patients, including the severely affected?

    Is there anybody in the whole UK?
     
  3. Sidereal

    Sidereal Senior Member

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    That was my first thought. Nonetheless, great (and shocking) news.
     
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  4. A.B.

    A.B. Senior Member

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    There are probably doctors, they just had to keep a low profile because going against the party line can bring problems.
     
  5. Bob

    Bob

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    That's great news! This could catch on!

    So they're taking a local needs approach rather than using the NICE guidelines as a template.
    I think Dr Bansal has a biomedical attitude? Plus doesn't Julia Newton have a clinic attached to her research facility? So there are probably at least a few appropriate clinical leaders. And (as @A.B. says) there may be people who have really wanted to set up this sort of clinic but have never had the opportunity.
     
    Last edited: Oct 2, 2015
  6. Sasha

    Sasha Fine, thank you

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    But they both already head up their own NHS ME/CFS units. If they move to Norfolk, that would leave their own units in the lurch, unless they're so constrained by the NICE model there that they'd be better off moving.

    I wonder if this Suffolk/Norfolk thing could drive the wedge into the national set-up and the other centres could go down like dominoes to the biomedical approach (mixed metaphors, but you know what I mean).

    I wonder how the rest of us use this 'local needs' mechanism to stop the poorly-done NICE guidelines being applied to us.
     
  7. Sasha

    Sasha Fine, thank you

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    But if they've got a low profile, they won't have the research track record.
     
  8. justy

    justy Senior Member

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    M.E patients in East Anglia are obviously practising the dark arts :)

    East Anglia is also the focus for the UK centre for biomedical research into M.E

    http://www.investinme.org/Research - ME Institute.htm

    Although perhaps the two are related?

    As to who could feasibly take this position - I have no idea who has the right credentials AND wants to give up their current position and move to East Anglia.
     
  9. Effi

    Effi Senior Member

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    Now this is refreshing! :thumbsup:
    Well they have to start somewhere... I think if the above mentioned specialties would work together towards the same cause, a lot of good things could happen! Right now you can go to either an immunologist, OR a neurologist, OR an endocrinologist. If they can work together within an official framework it could get really interesting I think. Let's not forget it's a complex (systemic) illness, so we might always need more than one specialty. At least until we fully understand the disease process.

    Hm I'm feeling strangely hopeful all of a sudden... :redface:
     
  10. Bob

    Bob

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    I wasn't suggesting that any specific clinical leaders would want to move to East Anglia, but just thinking that there might be a number of clinical leaders (some of whom we might be unaware of) who may have been waiting for this opportunity.

    That's what I was thinking. It could catch on quickly!

    I wonder if the new NHS organisational rules allows people outside East Anglia be referred to this clinic?
     
    Last edited: Oct 2, 2015
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  11. msf

    msf Senior Member

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    What does this mean for treatment though? My guess is nothing, for the moment anyway.
     
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  12. Sasha

    Sasha Fine, thank you

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    Well, one thing it could mean immediately for treatment would be testing PWME for OI as standard and treating them for that.

    And it could mean having proper cohorts for biomedical studies - such as the one we all want now to replicate the new work on antibodies.
     
  13. ukxmrv

    ukxmrv Senior Member

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    Sounds like a job for Dr Kerr or Dr Weir
     
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  14. Cheshire

    Cheshire Senior Member

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    Does someone know a bit about the history of this incredible decision? What was the role of patients' organisations? Are these centers yet less oriented toward CBT / GET than others?
     
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  15. Sasha

    Sasha Fine, thank you

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    Another thing that they could do is look at having people pace on an evidence-based basis, i.e. in line with the CPET studies from Workwell that indicate that we should be staying below our aerobic thresholds as much as possible.
     
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  16. Sasha

    Sasha Fine, thank you

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    I'd love to know that too. I want to know how the rest of us can achieve this.
     
  17. ukxmrv

    ukxmrv Senior Member

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  18. Battery Muncher

    Battery Muncher Senior Member

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    @Sasha

    We could recruit from abroad? I think the NHS seems to recruit overseas doctors nowadays, so maybe someone in the USA/ Canada/ Australia etc will fit the bill
     
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  19. justy

    justy Senior Member

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    so sorry not to have known more about Dr Terry Mitchell when he was alive - sounds like a lovely man.
     
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  20. shahida

    shahida Senior Member

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    But aren't these clinics bound by the NICE guidelines? If the likes of Dr A Miller get wind of this he could cause trouble- he has said they should offer nothing but CBT & GET/
     

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