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BBC Radio Scotland: John Beattie show will feature discussion of ME/CFS, 14th Feb 2018

Discussion in 'General ME/CFS News' started by Andy, Feb 13, 2018.

  1. Andy

    Andy Senior Member (Voting Rights)

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    As title - show will be live 12.00 to 13.30 and then will be available shortly after broadcast at http://www.bbc.co.uk/programmes/b09rjrd6

    Includes an interview with the chairman of ME Research UK, Dr Vance Spence.
     
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  2. Andy

    Andy Senior Member (Voting Rights)

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  3. Sasha

    Sasha Senior Member (Voting Rights)

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  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Seems it isn't possible to listen to from abroad :oops:
     
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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    :hug:

    Can you usually listen to old programmes on BBC iPlayer? Wondering if you'll be able to hear this once it's recorded.
     
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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    No. Seems none of the old Beattie-programmes either are available outside UK. Hope someone are able to give a short recap afterwards.
     
  7. Inara

    Inara Senior Member (Voting Rights)

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    @Kalliope, I had the same problem. I would be glad and thankful for a brief summary by someone.
     
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  8. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I'm listening now. Brief notes
    Controversial treatment debated in parliament next week
    Patients say it makes me them feel more unwell
    £5 million pounds
    Vance Spence - explain what ME is? Chronic long term condition muscle and brain. 2 types onset infection and 2nd longer
    What causes it ? - no known cause and whether it is caused by infection - continuing - unknown
     
  9. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Patient being interviewed (Emma Shorter?). Larger housebound and without research facing rest of life
    Diagnosed quite quickly. Had virus and never recovered
    Deteriorated with CBT - blamed for not improving
    You took part in trial funded by DWP ? Supposed to make you feel illness is due to false illness belief and exercised
    Archaic view of medicine - 80's hysterical paralysis
    Comes from a shameful place in medical history
     
    Last edited: Feb 14, 2018
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  10. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    What happened when you followed treatment in this trial - became housebound, wheelchair
    My consultant told me that I should have tried harder
    Patients told to try this harmful treatment or you won't get disability payments
    Now interviewing Emma's Mother
    Emma was told she was at fault. Emma's Mother excluded from appointments as they were ... her false illness beliefs
     
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  11. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    MP now being interviewed
    Long term impact of trial (PACE but the name not mentioned yet)
    People are still being encouraged to exercise and this is causing harm
     
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  12. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    PACE finally mentioned by name in statement by Govt
    Also says NICE guideline is being looked at

    MP says she hopes exercise will be removed from guideline
    Needs huge amount of education of GPs

    Very damaging headlines "exercise your way out of ME"

    Need better guidelines
     
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  13. Inara

    Inara Senior Member (Voting Rights)

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    Thanks @ukxmrv! Up til now it doesn't sound so bad!
     
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  14. Sasha

    Sasha Senior Member (Voting Rights)

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    Freeview 719 just gets me my local BBC station, not BBC Scotland (though presumably it works in Scotland!).
     
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  15. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Vance Spence - Feels like a "Hamster on a wheel"
    CMO report on ME "mike Armstrong" 12 principle recommendations and not one acted on
    why - politics medicine barriers
    30 decades of ME and he is 69 (not worked since 39)
    He thought the report would set up a center of excellence and clinics. This would start research
    There are no clinics in Scotland and no resurces
     
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  16. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    MP talks about treatment centers in England. Doesn't seem to understand that these are largely harmful
    The results of this trial is felt around the world - she has info from Europe and Australia from people harmed
     
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Talking about PACE trial debate......
    Dr Spence........explaining what ME is, what causes it, no known cause.
    Emma Shorter; talking about how she got ME and how it affects her. Because of lack of research will likely be for the rest of her life. She had a virus was given CBT/GET and deteriorated.
    Explaining about CBT............illness is due to false illness belief.
    Archaic idea about hysterical paralysis.......really good run down of how the belief of psychs has impacted on treatment or lack of.
    She got worse, could walk before, ended up in a wheelchair, she was told it was her fault and should have tried harder........happening to children and parents are being blamed, people claiming benefits being turned down.
    Janet (Emmas mother) talking about how Emma was told she was staying ill because she wasnt trying hard enough.
    Debate in Westminster:
    CM: impact of the PACE trial.......now regarded deeply flawed.
    Starts from position of the illness being psychological, people being forced to do exercise which can be hugely damaging.
    DOH: statement NICE are reviewing guidelines.........usual blurb.
    CM: good they are looking at the guidelines and hope we get a removal of GET, but there are so many medical practitioners who still believe in it. Plus public perception.

    Symptoms, Drs not being educated.

    Dr Vance: 15 years ago CMO Scot released a report with 12 recommendations not one has been acted on. Barriers, politics. Problems of recruiting patients for research, no clinics in scotland or specialist.

    CM: this is not a Scotland only issue. People in England are also not getting appropriate treatment.
    Need better guidelines. NICE guidelines has bigger reach than just UK.
    I have had correspondence from Australia ,canada, etc the PACE trial has had far reaching cons3quences.
     
  18. Inara

    Inara Senior Member (Voting Rights)

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    Thanks guys, awesome!
     
  19. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Patient (Emma ) asked what her day is like - make choices, wash hair/talk to friends. Every day choice of small activities. Large activities in bed in pain. Toll on mental health she is asked? It can be really difficult. Enjoy what you can do. Achievement making breakfast. Main problem is energy
    Scottish Govt part funded the trial
    Scottish good practise guidelines include exercise - need to be changed
    Barely have the energy to care for onself

    Asks Vance Spence - have to find the energy to fight all this. No infrastructure to carry out research. Huge problem. 2003 report needed to be acted on. ME Research UK funding 12 project but most overseas. 2 in the UK. No application for research in ME
     
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    ES: every day is a choice of small activities.
    Interviewer: It must take a toll on your mental health
    ES you have to learn to take enjoyment from things you like.
    The main problem: PACE trial. Scottish good practice guidelines should be changed as well as NICE.
    Dr Spence:
    patients having to fight for this illness, no infrastructure in Scotland.......most research being done overseas.
    CM: PACE trial has to be exposed. One of the difficulties is that the patients is they are not seen.
    mentions millionsmissing.
     

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