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Scottish Parliament Debate on ME/CFS (Thursday 12th May)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 8, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Scottish Parliament Debate on ME/CFS (Thursday 12th May)

    SNP MSP Gail Ross is highlighting International ME Day during a debate in the Scottish Parliament on Thursday at 12:45.

    BBC Scotland’s Holyrood Live will be covering the debate here: http://www.bbc.co.uk/news/live/uk-scotland-scotland-politics-39844957

    On this page you will find the video of the debate live from 12:45 on Thursday.

    The BBC will also provide reports, social media reaction and background information provided by the MEA as the debate proceeds.

    As part of our ME Awareness Week coverage the MEA has been providing background information to the BBC and researchers for Scottish parliamentarians in preparation for this debate..

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. Dolphin

    Dolphin Senior Member

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    For what it is worth: Thursday is May 11
     
    Last edited: May 9, 2017
  3. charles shepherd

    charles shepherd Senior Member

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    Thanks Dolphin

    The day/date came from the BBC

    I think the debate is taking place on Thursday but will check again

    CS

    PS Yes - it is Thursday May 11th!
     
    Last edited: May 9, 2017
  4. Chrisb

    Chrisb Senior Member

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    It appears to be a most unfortunate coincidence that ME Awareness Week falls in the same week as Mental Health Awareness Week.

    One hopes that it is a coincidence.
     
  5. Yogi

    Yogi Senior Member

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    The footage from Scottish Parliament.

    http://www.scottishparliament.tv/Ar...1&orderByField=ScheduledStart&queryOrder=DESC

    I

    AFME informs Scottish Parliament.
    https://www.actionforme.org.uk/news/action-for-me-informs-scottish-parliament-debate-on-me/

    AFME do not represent ME patients. AFME are actively against ME patients interests.

    http://www.falkirkherald.co.uk/news...-charge-for-better-care-in-scotland-1-4439780


    I have not listened to it all but go to 13 mins and the MSP has been mis-advised about Simon Wessely's history and this history is being re-written.
     
  6. slysaint

    slysaint Senior Member

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    @emsho gets mentioned a few times.

    AfME getting over £300,000 to set up scheme in Scotland :aghhh:
    As Yogi said.........Simon Wessely 'our saviour' was quoted about researchers not wanting to go into this area of research.
    Two speakers called #Millions Missing missing Millions........(although I confess I've made the same mistake myself but I have ME and I'm not a politician).

    One speaker said that 'a lot of people with ME suffer from depression', and another speaker spent sometime talking about the stigma of mental illness.

    They repeatedly thanked AfME for all their good work.

    :( good they had the discussion, shame they did not have all the right information....but then they were being 'guided' by AfME
     
    Last edited: May 11, 2017
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  7. Matthew Jones

    Matthew Jones Senior Member

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    I didn't think they did a bad job. One of them said it was a physical illness and was autoimmune. Another said how ridiculous it was that it was once considered 'mass hysteria'. They call for more funding and better care. Overall I felt encouraged.

    Fortunately the quote about Weasley didn't actually end up encouraging the psycho-social narrative in the way it was said so its not that bad.
     
  8. dangermouse

    dangermouse Senior Member

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    I wonder if the UK Parliament will have a debate too?

    I liked the mention of the DWP and that patients shouldn't feel shamed or humiliated (during assessments) and that they will address the application process for benefits, such as PIP, so that it will be no face to face stressful assessment and awards (for all long term conditions) will be longer. That (if they do it) would be better.

    I thought the first speaker was assertive when she made it clear that ME is not psychological and not "all in the head".
     
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  9. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    How thoughtful of our neglect oligarchs to declare ME a real physical illness 48 years after it was declared a neurological disease! I can't think of anyone more fit to govern than the people who do.

    Clearly the Americans will be jealous of these marxist driven agenda politics where the infected are told they are mad but cannot donate blood or tissue.

    The way we are treated makes me feel genuinely warm to the core with patriotism and proud to be British. If we can form an orderly queue in 2020 when we're universally allowed a Vitamin D blood test, then we can all press restart and try our lives out again.
     
  10. Barry53

    Barry53 Senior Member

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    Yes, I wondered about that, especially when the Today programme on BBC's R4 briefly mentioned it was Mental Health week, yet no mention at all of ME Awareness week.
     
  11. Yogi

    Yogi Senior Member

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    Does clash with ME Awareness day on 12 May. I thought deliberately done.
    MH awareness more prominent this year.
    But no it is probably coincidence- was launched in 2000.

    https://www.place2be.org.uk/our-story/news/mental-health-awareness-week-2015.aspx
     
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  12. slysaint

    slysaint Senior Member

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    People should watch this because it shows how despite all the good intentions things can go so horribly wrong.

    If you also listen to the two Radio Scotland phone in shows that took place a short while ago you will hear that the ME sufferers in Scotland although pleading for help do not want the same as we have in England.

    But by putting AfME in charge this is exactly what they will get, although maybe more emphasis on children now AfME have their Child Services arm. And who is the 'specialist' in 'Pediatric ME' that they are closely connected to..?
    Scotland had a chance to do things differently but I fear it will just be an extension of the same. EC must be rubbing her hands with glee.........
     
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  13. dangermouse

    dangermouse Senior Member

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    I do hope that Scotland do things much better. I have concerns about them being guided by AfME.
     
    Last edited: May 12, 2017
    Jan likes this.
  14. slysaint

    slysaint Senior Member

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    "Inform ME Scotland is a 12-month, Scottish Government-funded project that will allow Action for ME to lead change in Scotland by reaching out to health and social care professionals."
    http://www.falkirkherald.co.uk/news...-charge-for-better-care-in-scotland-1-4439780

    "Action for M.E. has provided briefings for parliamentarians taking part in a debate in the Scottish parliament this week, following a motion from Gail Ross MSP for the Parliament to acknowledge International M.E. Awareness Day."
    #Millions Missing is mentioned at the bottom of this write up.
    https://www.actionforme.org.uk/news/action-for-me-informs-scottish-parliament-debate-on-me/

    "
    New project to lead change launched in Scotland
    May 09, 2017

    Action for M.E. has launched a new 12-month, Scottish Government-funded project as part of M.E. Awareness Month that will allow us to lead change in Scotland by reaching out to health and social care professionals.

    Inform M.E. Scotland will also aim to engage health and social care professionals in discussions about how to improve the support they provide to people with M.E.

    News about the project’s launch has already been picked up by 26 newspapers, such as the Arbroath Herald, bringing awareness of the project and M.E. itself to an estimated circulation of 60,000 people.

    We’re delighted to see the project getting so much interest, especially during M.E. Awareness Month.

    Keep an eye on this website and our social media for all the latest news updates on Inform M.E. Scotland and our other activities."
     
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  15. JaimeS

    JaimeS Senior Member

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    Oh dear lord -- what a misstep.
     
  16. Esther12

    Esther12 Senior Member

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    AfME are a disaster zone. They know that they can't defend their actions so they just try to work behind closed doors, avoid discussion, avoid debate. They're a real threat to patients in the UK.
     
  17. A.B.

    A.B. Senior Member

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    AFME is a problem.
     
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  18. Jan

    Jan Senior Member

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    How/why is AfME doing this project and not MEA, or any other patient org? Does anyone know how this came about?
     
  19. Solstice

    Solstice Senior Member

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    Is there any possibility of turning these people on to the invest in me meeting? It would be particularly helpful if they sat through David Tuller's address.
     
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  20. SamanthaJ

    SamanthaJ Senior Member

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    Could it be because Dr Gregor Purdie, one of AfME's medical advisors is Scottish? Dr S mentioned him, favourably I think, in the BBC Radio Scotland broadcast. According to AfME's website he co-authored the Scottish Good Practice Statement on ME. Anyone know more about that?

    It's almost like AfME has a split personality - would love to know what on earth is going on behind the scenes.

    ETA: There's mention of and links to the SGPS on this thread - http://forums.phoenixrising.me/inde...cfs-on-monday-7th-november.47773/#post-783606

    Still worried about EC somehow getting in on the act, though.
     
    Last edited: May 14, 2017
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