Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Seeking Solutions conference in Belfast GREAT NEW DEVELOPMENT

Discussion in 'General ME/CFS Discussion' started by Keela Too, May 31, 2017.

  1. Keela Too

    Keela Too Sally Burch

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    [​IMG]

    Exciting times. There is now a short report on FB with more photos.
    A more detailed report to follow including some developments in N.Ireland.

    In image above, Hope 4 ME & Fibro NI committee members, conference host Robbie Butler, our Patron Jo-Anne Dobson, and conference speakers Dr Weir, Prof Mella, David Tuller & Linda Tannenbaum:
    Left to Right
    Eilidh Gilmour, Belinda Dale, Dr William Weir, Robbie Butler MLA, Professor Olav Mella, David Tuller DrPH, Linda Tannenbaum,Jo-Anne Dobson, Joan McParland, Sally Burch, Ruairi McLaughlin

    "Our conference "SeekingSolutions for ME & Fibromyalgia" brought top international speakers and researchers to Stormont, Belfast yesterday.

    Amongst the audience were key health care decision makers from both Northern Ireland and the Republic of Ireland. The audience were receptive, and we are very optimistic that changes in the approach to patient care will result from this new awareness and understanding.

    A more detailed report will follow shortly. In the meantime here are a few photos.

    Thanks to Robbie Butler MLA for hosting the event and to our charity patron Jo-Anne Dobson for chairing the conference and so eloquently introducing each speaker.

    Big thanks also to our outstanding speakers: Linda Tannenbaum, Dr William Weir, Professor Olav Mella, David Tuller DrPH, and Dr Christine McMaster - we greatly appreciate the messages of hope and progress, that you delivered.

    Thank you."

    https://www.facebook.com/Hope4MEFibro/posts/1404112342980915
     
    Last edited: May 31, 2017
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  2. Keela Too

    Keela Too Sally Burch

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  3. dangermouse

    dangermouse Senior Member

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    @Keela Too this is so refreshing isn't it. So uplifting, optimistic and a feeling of being validated and helped rather than the horrible stuff that is churned out by the BPS lot.

    Thanks for sharing this and the picture, it makes it real and certainly gives hope.

    :thumbsup::):thumbsup:
     
  4. Keela Too

    Keela Too Sally Burch

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    Still need to see it happen, but this is optimistic.
    And if patients know about it they can send GPs there too.

    That along with the advertising of a new medical lead - which we are told will go into the BMJ once all the formalities are sorted out - makes for very exciting times.
     
  5. MEMum

    MEMum Senior Member

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  6. Barry53

    Barry53 Senior Member

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    Last edited: Jun 30, 2017
  7. Keela Too

    Keela Too Sally Burch

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    I am in Jim Shannon's constituency. I have met him twice already this year and he seemed to be onside with ME patients. Indeed he signed the MAIMES campaign letter. I am currently trying to secure another meeting with him to find out the motivation for this question. I'm hoping @Barry53 that you are right.
     
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  8. Keela Too

    Keela Too Sally Burch

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  9. sarah darwins

    sarah darwins I told you I was ill

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    This should definitely have its own thread. On the face of it, it's astonishingly obtuse.
     
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  10. Keela Too

    Keela Too Sally Burch

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    Let's wait and see what he comes back to me with.
     
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  11. Demepivo

    Demepivo Dolores Abernathy

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    https://www.theyworkforyou.com/wrans/?id=2017-06-27.1519.h&s=nice get#g1519.r0

    [​IMG]Jim ShannonShadow DUP Spokesperson (Health), Shadow DUP Spokesperson (Transport), Shadow DUP Spokesperson (Equality)
    To ask the Secretary of State for Health, what steps his Department is taking to encourage people with chronic fatigue syndrome to exercise each day.

    [​IMG]Steve Brine The Parliamentary Under-Secretary of State for Health

    In 2007 the National Institute for Health and Care Excellence (NICE) produced the best practice clinical guideline, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/MEin adults and children. The guideline, last reviewed in 2013, sets out best practice on the diagnosis, treatment care and support of children and adults with CFS/ME and supports local National Health Service commissioners and clinicians in the delivery of services.

    The NICE guideline makes recommendations on the use of Graded Exercise Therapy (GET) in patients mildly or moderately affected by CFS/ME. GET is a structured exercise programme designed to gradually increase how long someone can carry out a physical activity. It should be tailored to a person's current level of activities and should be delivered only by a suitably trained GETtherapist with experience in CFS/ME under appropriate clinical supervision. The guideline also acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. The guideline can be found at the following link:

    www.nice.org.uk/guidance/cg53/resources/chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-pdf-975505810885

    To ensure its recommendations reflect the latest available evidence, NICE is currently reviewing its guidance to see if an update is required. A decision is expected shortly.
     
  12. Barry53

    Barry53 Senior Member

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    Just realised that due to my currently limited iPhone4 access I just saw the whole long text as the question, whereas most of it is the (as usual nebulous) answer. I suspect now that the original question may have been with the purpose of getting the Secretary of State for Health to clarify his position prior to the NICE guidelines reappraisal. I'm sure Jim Shannon will have know the kind of response he would get. But given what you say about him it is possible he is just looking to get a peg in the ground here.

    Afterthought: if JS has got wind of other BBC programmes in the pipeline then he may even be looking for exactly the answer he got, because soon it will hopefully be a blatantly stupid stance not just to us but to the general public. He may be looking to then ask a similar question after such BBC programme. Giving people enough rope to hang themselves by.
     
    Last edited: Jun 30, 2017
  13. Binkie4

    Binkie4 Senior Member

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    Are we doing tents again?⁉️⁉️⁉️

    Sorry. Couldn't resist it.
     
  14. Jo Best

    Jo Best Senior Member

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    Well done Sally. In that case then I'm sure he has the best intention, and if so then I like his style.
     
    Last edited: Jun 30, 2017
  15. Demepivo

    Demepivo Dolores Abernathy

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    @Keela Too Having seen this & other posts...it seems it may have been a bizarre well intentioned badly informed cock up.

    Looking forward to clarification
     
  16. TiredSam

    TiredSam The wise nematode hibernates

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  17. Barry53

    Barry53 Senior Member

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    Not convinced. Time will tell.
     
  18. Robert 1973

    Robert 1973

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