New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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BBC Scotland covering ME/CFS on Monday 7th November

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Nov 6, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    paul80, Valentijn, Barry53 and 4 others like this.
  2. charles shepherd

    charles shepherd Senior Member

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    paul80, Valentijn and Barry53 like this.
  3. charles shepherd

    charles shepherd Senior Member

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    From the MEA NHS Services Directory:

    NHS SPECIALIST SERVICES IN SCOTLAND

    We want to build up a picture of specialist NHS services for adults and children with ME in Scotland. If you know of any good services, please let us know. If you have any tried any services, your feedback will be most welcome. Email here.

    We’ll publish the detail as it comes in.

    Astley Ainslie Hospital
    Department of Clinical Psychology, Astley Ainslie Hospital, 133 Grange Loan, Edinburgh EH9 2HL. Open only on Thursdays and Fridays. Tel: 0131 537 9139.
    This is a Lothian-wide service for patients with a diagnosis of ME/CFS, who are well enough to attend the service. The service was set up as a two-year pilot starting in November 2012 but has since been granted a year’s extension to run until the end of November 2015. It is based in the hospital’s pain management service and is run by specialist physiotherapy and applied psychology staff.

    Glasgow
    NHS Centre for Integrative Care, 1053 Great Western Road, Glasgow G12 0XQ, Tel: 0141 211 1600.
    Clinical lead: Dr David Reilly

    Fife
    Scotland’s only specialist nurse-led service for patients with ME/CFS is at the LadyBank Clinic, Commercial Road, Ladybank, Fife KY15 7JS, tel: 01337 832 123, email: keithanderson1@nhs.net It is run by Keith Anderson, a qualified psychotherapist and CBT therapist. Mr Anderson recently gave a talk to Edinburgh ME Self Help Group; to download a short report of this talk, please click HERE.

    Stornaway, Western Isles
    A Fatigue Management Programme was opened in May 2011 at the Western Isles Hospital in Stornoway to help people with fatigue to explore the reasons for the fatigue and equip them with the techniques to manage the problem better. A video link to Uist and Barra Hospital may be set up, if there is a demand for it. The Western Isles, with a population of about 26,000 people, has no specialist ME/CFS service. To inquire about joining the programme, please contact Elaine Smith, Occupational Therapy Department, tel: 01851 708287, or email elaine.smith1@nhs.net who will send you an application form.

    That's it as far as hospital based services for a part of the UK with a population of around 5.400,000 - with no specialists referral service for children and adolescents at all…


    Complete MEA NHS services directory for the whole of the UK: http://www.meassociation.org.uk/spe...uk-this-page-last-updated-on-27-october-2016/
     
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  4. charles shepherd

    charles shepherd Senior Member

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    Please remember that over 99% of the people in Scotland listening to this programme tomorrow will have never heard about FITNET and will have no interest in FITNET.

    The main purpose of doing BBC interviews is not to preach to the converted but to try and get across three simple messages to the general public:

    1 ME/CFS is a serious neuromuscular-immune disease that affects around 250,000 people here in the UK, of which around 25% are severely affected,

    2 the situation regarding NHS education of health provision and provision of hospital based referral services is still quite shocking,

    3 we need research into the underlying biomedical cause of the condition - which could then lead to effective forms of treatment.
     
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  5. Esther12

    Esther12 Senior Member

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    I always suspected one of the reason there seemed to be less prejudice coming from Scotland was that they had fewer dodgy therapists making money from pretending they were more useful than they are.

    The services mentioned above look worse than nothing.

    Greater service provision can bring with it social costs even if the services themselves aren't directly harming patients.
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    Carson tho.
     
  7. Esther12

    Esther12 Senior Member

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    Sharpe was in Edinburgh too. But it still seems the Scottish NHS documents I read are normally better (not that I've really read enough to make an informed judgement on this). IMO: that they're not opening specialist centres for CBT/GET seems like a good sign.
     
    Last edited: Nov 6, 2016
  8. worldbackwards

    worldbackwards A unique snowflake

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    Whenever I think of Carson it creates a black spot on my mind that obliterates any other rational thinking other than bloody Carson.

    I agree that not opening CBT centres is good, but I doubt they aren't doing it for our benefit. :)
     
  9. TiredSam

    TiredSam The wise nematode hibernates

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    Really not trying to be negative here, but can't help wondering about the following:

    Is there any point in trying to get more hospital based referral services anywhere in the UK at the moment? Surely any new services that were set up would have to adhere to the NICE guidelines, and would be staffed by what currently pass in the UK as "experts" - ie psychotherapists. The best that could be hoped for would be services run by people who are prepared to risk their livelihoods by ignoring NICE guidelines. I've heard that such places do exist in the uk, but wouldn't the more likely scenario be "ok, here's your million pound building, we already have the NICE guidelines in place and we will be asking our acknowledged ME expert Ms. Crawley to advise on how to run it".

    And if that happened, then years later on that happy day when PACE and the BPS school are consigned to the dustbin of history, the NICE guidelines are amended to recommend rest, pacing and whatever biomedical treatments have come along by then, the hard-won UK ME centres will be staffed by hundreds of Crawleys intent on retaining their jobs.

    Just thinking out loud, be interested in any other opinions.
     
  10. TiredSam

    TiredSam The wise nematode hibernates

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    By the way @charles shepherd quite agree with your 3 point message and very much appreciate your appearance on BBC Scotland.
     
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  11. joyscobby

    joyscobby Senior Member

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    Scotland does not follow NICE - NHS Scotland is separate and always has been since its inception.

    The Scottish Good Practice Guidelines are the ones "Health Proffessionls" in Scotland should follow. The draft guidelines were more or less what we would of wanted. However, by the time the process was finished it was watered down to such a degree that they became more or less useless. They were interfered with by the usual suspect - the psychs - Gerada (Wessely's Wife) AfME and others. It is time that they were revisited as The Guidelines are meant to be a living Document to be updated as and when knowledge changes. Given that PACE has been debunked now would be a good opportunity.
     
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  12. Battery Muncher

    Battery Muncher Senior Member

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    Thank you for agreeing to advocate for us again. I think this three point approach is what is needed, good luck with the interview.
     
  13. Skippa

    Skippa Anti-BS

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    Question re "severely affected" (25%)

    Does that mean affected in an acute sense eg bedbound, crippling pain, barely moving at present

    Or does that also include chronic but middling - eg not bedbound but suffering for decades nonetheless and involving many life changes/reduced qol?
     
  14. charles shepherd

    charles shepherd Senior Member

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    Fair comment

    Yes, Scottish doctors may take note of NICE but it does not have the same status as in England - which is partly why the SGPS was prepared

    Work started on this around the time that the NICE guideline was published back in 2007

    I was closely involved with Dr Gregor Purdie on the original work on this Scottish guidance - much of which was based on the MEA purple book at the time

    It should be a living document (like the MEA purple book!) that is subject to regular updates…...
     
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  15. charles shepherd

    charles shepherd Senior Member

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    I normally qualify this statement by explaining that this refers to people who, at some stage in their illness, have severe symptoms and who are normally housebound, wheelchair or bed bound
     
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  16. dyfalbarhau

    dyfalbarhau

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    Any chance of something like this for BBC Wales? Hopefully the view that it is a biological illness will take root in Scotland and we can use that to get it spread across the rest of the UK! This is excellent to see, we really need to have a media push of our own to combat the narrative pushed by the SMC and BPS researchers.
     
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  17. Cinders66

    Cinders66 Senior Member

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    Unless that statement is also qualified by acknowledging that severe ME can last years/ decades, saying at some point in illness can be diminishing as public will think of it as a couple of months like being laid up with a nasty infection, temporary inconvenience. Of course severe ME can be for some a transient state, especially in the newly ill But Severe ME can also be being plunged in to a long lasting, Life obliterating misery. People who had the misfortune to be badly managed as MEA research 2004 showed as strong risk factor, can wound up severe as a long term state.
     
    Last edited: Nov 7, 2016
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  18. UKmum

    UKmum

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    Well done Dr Shepherd & Radio Scotland. I missed the beginning but from what I heard messages were delivered loud and clear.
     
  19. Countrygirl

    Countrygirl Senior Member

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    One of the...........if not THE best BBC programme on ME I have heard.

    Well done and thank you to everyone who took part, especially Dr Shepherd.
     
  20. charles shepherd

    charles shepherd Senior Member

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    The BBC had so many questions and comments pouring in this morning, especially about the PACE trial - so they decided to extend the ME/CFS discussion from 30 minutes (as was originally planned) to a full hour

    And I think there were some very loud and clear messages on the BBC this morning about both the PACE trial and the NICE guideline on ME/CFS!
     

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