The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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UK ITV News Video - Lack of support for ME sufferers makes life even harder

Discussion in 'General ME/CFS News' started by Bob, Jul 4, 2014.

  1. Bob

    Bob

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    Last edited: Jul 15, 2014
  2. Bob

    Bob

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    Some Quotes from the Patient:

    "At this age, especially, there's a lot of banter going around, and not many people understanding, you know, what it is. They just say: Oh, you're tired, you haven't got anything wrong with you. Everyone's tired."

    "You see me now, I'm healthy, looking good. But one minute you're fine - you feel, OK I'm doing alright - and then you can collapse in a heap."

    "At the moment it seems like there's no one there for you. You're on your own. You're out there fighting for yourself really."


    Other Quotes:

    "Research a few years ago showed that 50% of GP's either weren't confident to give a diagnosis or didn't still believe in the condition. So if you're unlucky and take your child to one of those GP's, that's a brick wall before you start."

    "A quarter of a million across the UK are affected: 25% severely so."

    "Unless care improves, ME will remain a very lonely diagnosis to deal with."

    "ME still struggles to be seen as a serious illness."
     
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  3. A.B.

    A.B. Senior Member

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    Does "specialist care" mean psychobabble?
     
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  4. Sasha

    Sasha Fine, thank you

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    Nice, sympathetic piece.
     
    Bob likes this.
  5. manna

    manna Senior Member

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    hmmm im scared stiff of "specialist support". good coverage though, nice share..
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I am not aware of any real specialist support provided for ME by the NHS. What I would like to see is 'effective treatment', based on proper evidence!

    I'm sure if there was any, we would be flocking to make use of it.

    So many people in the UK get all excited and positive when they get a referral, and then announce confidently that they are going to undergo 'rehabilitation'.

    And then we find out what that means: CBT and GET.

    It's one reason I stopped using a UK-based ME forum. It was too depressing to have to keep having the Queen song 'Another One Bites the Dust' spring unbidden to my mind, and to know that it was likely that the eager patient would soon lose even more of what remained of his/her health.

    And they are so unwilling to believe that it could be quackery and make them worse.

    :(:bang-head:
     
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  7. Bob

    Bob

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    ITV (a national UK TV broadcast channel) have done another video, this time on Tyne Tees News - a local news program.

    It includes our friend Julia Newton, and this time the feature is about a 20 year old female patient.

    The video starts off well, but then ends questionably by seemingly suggesting that 'recovery' can come about by drinking juiced vegetables.
    The patient is obviously improving, and feels highly optimistic about her future, which is great news.


    "I want to tell people with ME that there is hope"
    14 Jul 2014
    http://www.itv.com/news/tyne-tees/2014-07-14/i-want-to-tell-people-with-me-that-there-is-hope/
     
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  8. khr

    khr

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    This video just shows that if you are lucky and get proper diagnosis early (in the clip she said 3 weeks to get diagnosed) and total rest and management, you will recover. Not juices and yoga.
     
  9. Bob

    Bob

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    Yes, I agree. Early diagnosis, good advice to stop everything, intensive resting and learning to pace, has the potential to protect and avert severe illness. At least they don't mention GET in the video!
     

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