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BBC Wales are planning a story on ME

Discussion in 'Advocacy Action Alerts' started by MSEsperanza, Sep 22, 2018.

  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Indigophoton, MEMarge, inox and 17 others like this.
  2. MeSci

    MeSci Senior Member (Voting Rights)

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  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  4. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  5. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Yes, thanks. And on seeing the post by @MSEsperanza I contacted Jan. Not sure if I fit the bill but I've made myself available.
     
  6. ladycatlover

    ladycatlover Moderator Staff Member

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    I've put it on Twitter for what it's worth. ;) I begin to feel like I live in Wales these days - had Feb and most of March here, then back the end of April and going home next month... More than half the year already! Especially since we hope to get back after I've had my dental work sorted.
     
  7. MEMarge

    MEMarge Senior Member (Voting Rights)

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    @Simon M you are in wales aren't you? Or are you just across the border in UK?
     
  8. Andy

    Andy Committee Member & Outreach

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    https://www.bbc.co.uk/news/uk-wales-45954552
     
  9. Andy

    Andy Committee Member & Outreach

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    Code:
    https://www.facebook.com/meactionscot/posts/2191789611142121
     
  10. MeSci

    MeSci Senior Member (Voting Rights)

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    Not sure if there's anything new in this:

    Station: BBC Radio Wales

    Date: October 24, 2018

    Time: 18:30

    WebRadio: https://www.bbc.co.uk/programmes/m0000v2q

    Item: ME in Wales

    - - - - - - - - - - - - - - - - - - - - - - - - -
    Source: BBC News

    Date: October 24, 2018

    URL: https://www.bbc.com/news/uk-wales-45954552

    ME and chronic fatigue: 'All I could do was lie in bed'
    -------------------------------------------------------

    A woman who was diagnosed with ME says she struggled to get out of bed for several years after her diagnosis of the chronic condition. Anne Kavanagh, 68, from Bridgend, had to give up work and check in to a self help centre, but was told she was not eligible for benefits. The situation for patients in Wales has been described as 'scandalous' by the ME Association. The Welsh Government said health boards were responsible for their patients.

    What is ME?

    Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is usually triggered by a viral infection which leads to muscle fatigue, pain and neurological symptoms such as short term memory loss. About 13,000 people in Wales are thought to suffer from ME, and 70% of those are women.

    * Calls to scrap common treatment for ME

    https://www.bbc.com/news/newsbeat-44004882

    * Chronic fatigue syndrome: What not to say

    http://www.bbc.co.uk/newsbeat/artic...someone-with-chronic-fatigue-syndrome---or-me

    Ms Kavanagh, a former head of special needs at a comprehensive school, started showing symptoms for the condition 10 years ago. I was an exceedingly energectic person,' she told BBC Eye on Wales. 'My job was very exacting but I loved it. I was a dog trainer, travelled all over the country. My life was good.'

    After contracting a virus which gave her no symptoms other than a temperature, Ms Kavanagh was repeatedly signed off work with post viral fatigue as she struggled to get out of bed and return to work. She says she felt 'hopeless' because of the condition and her weight dropped to less than six stone, but added she was 'worried whether people would believe I was genuinely ill'.

    'Scandalous'

    Charles Shepherd, medical adviser to the ME Association, said: 'My experience from contact with patients in Wales is that many GPs are still very unsure and uncertain about how to diagnose this illness. They are equally uncertain about how to manage this illness.

    'There are five adult services in Wales but none of them are multidisciplinary physician led which is what these services should be. Overall the situation in Wales is scandalous.'

    * Chronic fatigue trial results 'not robust'

    https://www.bbc.com/news/health-43490335

    * Chronic fatigue therapy 'may help pupils'

    https://www.bbc.com/news/health-41336384

    Jan Russell, of Wales Action of ME & CFS support (WAMES), added the lack of diagnosis and help for patients is 'a health and social care crisis, even a humanitarian crisis'. But Owen Hughes, who chairs a group to improve ME services, said progress had been made, despite issues. 'Progress has been slow. There are some very good services in Wales and it's a shame that not everyone has those services on their doorstep,' he said. The Welsh Government said: 'Health boards in Wales are responsible for the healthcare needs of their population.'

    After being forced to officially resign from her job as a teacher two years after falling ill, Ms Kavanagh underwent an assessment for Employment Support Allowance (ESA), but said she was told she was not eligible, an experience she describes as 'humiliating'.

    'They didn't ask the appropriate questions. There was no relation to what I was feeling,' she added. 'I'd have had better luck if I'd had a bad back.'

    Eventually, Ms Kavanagh was diagnosed with Chronic Fatigue Syndrome on the NHS and was offered some support early in the morning, but she had no way of getting to the centre to undergo rehabilitation exercises. She found a place to start her recovery at the Sandville self-help centre in Porthcawl, where she was able to visit three times a week to do simple exercises. 'They just said 'come when you're ready',' she said. 'I wouldn't be where I am now without Sandville. It took about five years for them to see the outgoing, happy person that I was.'

    For details of organisations offering help and support with ME/CFS visit

    http://bbc.co.uk/actionline

    Eye on Wales is on BBC Radio Wales at 18:30 BST on Wednesday.

    https://www.bbc.co.uk/programmes/m0000v2q
     
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    Still has a link to LP for kids in Bristol in it, really, really shouldn't be there
     
  12. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Anyone know who this is?

    "But Owen Hughes, who chairs a group to improve ME services, said progress had been made, despite issues. 'Progress has been slow. There are some very good services in Wales and it's a shame that not everyone has those services on their doorstep,' he said."
     
  13. Wonko

    Wonko Senior Member (Voting Rights)

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    Do these services, that are very good, in Wales, have anything to do with ME? Or is this just a random statement, attributed to someone who has a seat, who claims to want to improve ME services, in Wales?
     
  14. Andy

    Andy Committee Member & Outreach

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    https://uk.linkedin.com/in/owen-hughes-psych - Owen Hughes, Consultant Psychologist and Head of Pain and Fatigue Management at Powys Teaching Health Board
     
  15. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Yep. He runs what was the Pain and Fatigue Management Centre in Bronllys - now called the Centre for Long Term Condition Management. The methods they use are mainly psychological - CBT, Acceptance & Commitment Therapy (ACT), Mindfulness - with a bit of GET.

    It's not the solution that Charles Shepherd was talking about.
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    "She found a place to start her recovery at the..."

    Phrasing like that is a pretty good way of letting us know that they're quacky. A pretty poor piece.
     
    Last edited: Oct 25, 2018
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    Here's that "chronic fatigue" again. :banghead: It's getting beyond tiring that people with no understanding of this disease control the message for how it is discussed.
     
  18. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Does anyone on here have experience of the residential treatment at Bronllys?
     
    MSEsperanza likes this.
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Another (?) story from Wales (in welsh so used Google translate):
    "
    ME: "Her life just has stopped"
    Natalie Price, the love of Jonathan Vaughan, has been suffering from ME ( Myalgic Encephalomyelitis ) for four years. This is a condition that causes extreme fatigue, and prevents the person suffering from being able to live a normal life.

    Natalie Price, the love of Jonathan Vaughan, has been suffering from ME ( Myalgic Encephalomyelitis ) for four years. This is a condition that causes extreme fatigue, and prevents the person suffering from being able to live a normal life.

    Jonathan spoke at a Senedd event on Wednesday October 24 where a movie about the condition was shown.

    In his own honest words, he had to say what she was about to live with the condition, and the effect she had on him and Natalie."

    https://www.bbc.co.uk/cymrufyw/45979701

    https://translate.google.com/transl...//www.bbc.co.uk/cymrufyw/45979701&prev=search

     
  20. ladycatlover

    ladycatlover Moderator Staff Member

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    The event at Senedd was a showing of Unrest.
     

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