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Invite to Action for M.E.’s Severe M.E. Symposium & AGM, 14 Nov

Discussion in 'General ME/CFS News' started by Simon, Aug 29, 2014.

  1. Simon

    Simon

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    Monmouth, UK
    Invite to Action for M.E.’s Severe M.E. Symposium & AGM

    Friday 14th November 2014 10.00 – 4. 30 pm
    Allen & Overy LLP, One Bishops Square, London E1 6AD

    People with the most severe M.E. continue to face ignorance, injustice and neglect. This is simply unacceptable.

    Join us for a creative dialogue that will bring together key stakeholders to identify what we can do, together, to improve the support and services for the most severely.

    With a keynote presentation from Prof Hugh Perry, Experimental Neuropathology, the launch of our Severe M.E. Report following our Time to Deliver survey with over 2,000 people with M.E. amongst the presentations, this should be an informative as well as engaging event.

    Places are very limited. For more information and to register now: www.actionsevereme.eventzilla.net
    ===============================

    Personally, I'm delighted something like this is being done for those who are severely-affected and neglected (I lost too many years as severely-affected) and think having Hugh Perry there is a bit of a coup.
    Professor V Hugh Perry | University of Southampton

    (note he's Chair of the MRC's Neuroscience and Mental Health Board - the bit that funds any ME/CFS research)
    Last edited: Aug 29, 2014
  2. ukxmrv

    ukxmrv Senior Member

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    Depends if it is part of an attempt to roll out the existing NICE CBT/GET clinics for the severely affected
    Min and Keela Too like this.
  3. Chickadee9

    Chickadee9

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    Why should it be? The NICE guidelines make it clear that CBT and GET are not appropriate for the severely affected. Anyway, as the clinics have hardly any domiciliary services, how on earth are the severely affected supposed to get there? Moderately affected people can find that getting to the clinic is such an effort that it can offset any benefits from attendance. Why not take this at face value, as a genuine attempt to do something for a forgotten and neglected group of people? Surely trying to do something is better than doing nothing.
    Simon likes this.
  4. worldbackwards

    worldbackwards I talk because I can

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    Realistically, whether or not they wanted to roll out CBT/GET for the severely affected, this won't happen very soon - it would require money being spent on people who don't want that treatment, and given that there isn't money in mental health for people with genuine mental health conditions who do want, and would benefit from, treatment, I think we'll be left alone for a while yet at least.
    Last edited: Aug 29, 2014
  5. Dolphin

    Dolphin Senior Member

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    I always am a bit nervous when the severely affected are discussed. I've come across quite a lot of mild or moderate people with ME themselves who think people are severely affected because they're not managing the illness well. With a lack of understanding of the causes of what causes ME, they're a very vulnerable group.
  6. Min

    Min Senior Member

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    Yes, this is a very real wory, especially as the only 'research' so far has ben the farcical failed £1.5 million FINE study.

    I would like research into the pathogens found in the severely affected patients' spinal cords to be urgently undertaken before treatment is undertaken, as inappropriate treatment such as exercise could do so much harm and possibly kill.
    Valentijn, Sidereal and Wildcat like this.
  7. ukxmrv

    ukxmrv Senior Member

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    Because of this type of research. Note that 55% claim to be treating the severely affected but we know what the NICE guidelines said

    "This study found from the responses to the questionnaire emailed between February and March 2013 that while 55% of adult CFS/ME services in the NHS in England treated severely affected patients, 33% did not, with the remaining services offering regular but minimal (by email or telephone) or occasional assistance to this patient group. This suggests that a substantial proportion of patients with severe CFS/ME lack access to face-to-face, local specialist care, even when they live in an area with a CFS/ME service."
    ..

    "However, results from those services that do provide help for severe CFS/ME suggest that treatment is being offered in accordance with 2007 NICE guidelines1 including the use of MDTs and treatment individualised to patients including activity management, CBT and graded activity."

    http://bmjopen.bmj.com/content/4/6/e005083.full?sid=643d58c3-f6ee-470e-a7d2-8ed30dee6ffa
    Wildcat likes this.

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