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BBC TV: The stories of five ME sufferers, their descent into illness and quest...

Discussion in 'General ME/CFS News' started by Firestormm, Jan 24, 2012.

  1. Firestormm

    Firestormm

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    The stories of five ME sufferers, their descent into illness and quest for treatment

    What would you do if you had an illness which no-one could name? What if it made you so tired you couldn't put one foot in front of the other, or even drink a glass of water? And what would you do if your doctor didn't believe it existed? Welcome to the world of ME.

    Over 250,000 people in the UK are estimated to suffer from ME. Scientific opinion is sharply divided over the cause of the disease, the symptoms by which it should be diagnosed, the treatment methods which should be used and even - most disturbingly for sufferers - whether it is a 'real' physical affliction or a psychological 'false illness belief'. One thing is certain: it wrecks lives and in the absence of definitive research sufferers must live their lives in a frustrating limbo.

    In the first of a two-part Trusadh special on the illness, we hear the stories of five ME sufferers, their descent into illness and their quest for treatment.

    BBC Alba (Scottishland): http://www.bbc.co.uk/programmes/b019p6gp

    Here's the recorded programme Part 1 from last night - 23 January 2012 (Second part is next week):

    [video]http://www.bbc.co.uk/iplayer/episode/b019p6gp/Trusadh_Series_4_ME_An_Sgiths_Nimheil_%28Pairt_1%2 9_The_Toxic_Tiredness_%28Part_1%29/[/video]

    Am not sure if this is available to watch outside of the UK.
     
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  2. Valentijn

    Valentijn Senior Member

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    It's not available outside the UK :-(
     
  3. justy

    justy Donate Advocate Demonstrate

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    Thanks for this link. It seems like things really are changing in Scotland - for the better- i cant remember the exact details (anyone?) but i know there has been a recentish thread on here about the change in stance from the NHS in Scotland towards M.E.
    I'm going to try and watch this later when ive got my study out the way.
    All the best, Justy.
     
  4. Firestormm

    Firestormm

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    Morning,

    I would expect that this ends up on You Tube at some point Valentijin - I shall try and post a link from there if I find one.

    I have to say I thought this was really good overall. I thought the ex-policeman, Nasim and Kim (the photographer) were particularly good, but a great look at personal perspectives and the journey's made by those involved.

    Wasn't sure about the female doctor at first, and she seemed to lose it at one point, but recovered nicely towards the end.

    Dare I say it was even balanced? ;)

    I am not so sure the second instalment will be as good, but am interested to hear from the Neurologist Behan - less-so from the Mickel-Mouse chap! But if some therapies 'help' some folk diagnosed with my condition then that's fine by me.

    I would love to see such things subjected to unbiased scientific study however :D
     
  5. Jenny

    Jenny Senior Member

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    I agree this was quite a thorough exploration of people's experiences and it did well to communicate the effect of this illness on people's lives. No severely affected people were featured though (ie bedbound for years).

    Like Firestormm, though, given the preview, I fear that the next one will try to persuade us that some ridiculous 'psychological' therapy will provide a miraculous cure. Hope I'm wrong.

    Jenny
     
  6. Firestormm

    Firestormm

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    hi Jenny,

    Apparently the 25% Group were asked and the producers also looked for severe patients themselves but none came forward [MEA Facebook]. I agree it would have added more to the programme had they been able to include someone.

    Incidentally, plans are afoot to make the full documentary available on DVD!
     
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    yeah it was good bar the prevalance, after Norway etc, of psychological crap being mentioned
    and next week...hehe "Mickel mouse" good one, Firestormm ;)

    Scotland's smaller, more devolved, less BULLSHIT government's been lot more open to change etc than the horrible monstrosity of Westminster, which is largely why many of us want independance rather than any beef with England per se, hell, England from Liverpool up should rebel and form their own nation! ;)
    See current horror of the Clegg/Cameron scum determined to end the NHS and welfare in face of all decent opposition.


    ALBA GU BRATH!!
     
  8. Enid

    Enid Senior Member

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    Good for them firestormm - and may it wake up the ignorant UK medical profession.
     
  9. justy

    justy Donate Advocate Demonstrate

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    Ive just watched this and apart from a few naff things said by the doctor and the very severely ill not featuring i thought it was very good. Its made me a bit emotional this afternoon as every time i watch something like this it reminds me of how little help there is available for us all and that this IS for most a lifelong condition. Like the young man in the film i also thought i had 'recovered' once, only to become so much more ill later on.

    Come on Panorama - it's your turn next!
     
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  10. drjohn

    drjohn Senior Member

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    Letter, Re: ME survivor to talk on BBC (The Scotsman, 21 January 2012)

    http://www.scotsman.com/news/health/me_survivor_to_talk_on_bbc_1_2070357

    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    The Scotsman Letters.

    In the documentary, ME: An Sgths Nimheil/The Toxic Tiredness, Part 1 (BBC Alba TV, 23 January 2012 -- http://www.bbc.co.uk/programmes/b019p6gp), after listing symptoms, "which lead to a lifestyle that is awful," Dr Sarah Marr says that, although for a few patients it may run its natural course, M.E. (Myalgic Encephalomyelitis) is, for the majority, a lifetime illness, "though," she concludes, "it is not fatal." Tell that to the surviving families and loved ones of Lynn Gilderdale, Sophia Mirza, amongst others around the world and then wonder how many more have never been tested in life or post mortem.

    It would seem most intelligent to follow up what they had in common after death - basal ganglionitis - for frequency, cause and any inflammatory similarities of sufferers still living with M.E. Yet we continue to squander precious funding on management techniques which have so clearly failed for at least 25 years, or why do so many people remain ill for decades.

    Yours sincerely
    drjohngreensmith@mecommunitytrust.org
    Dr John H Greensmith
    ME Community Trust.org
     
  11. justinreilly

    justinreilly Senior Member

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    I really want to see this, so if someone can post to youtube or something, that would be great.
     
  12. Firestormm

    Firestormm

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    It's now on You Tube:

    [video=youtube;MkiIjVeYcZU]http://www.youtube.com/watch?v=MkiIjVeYcZU&feature=youtu.be[/video]

    In segments apparently...
     
  13. alex3619

    alex3619 Senior Member

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    Just to let people know, this was uploaded by IloveCBT which you can see by a mouseover. Bye, Alex

    PS I am wondering if the label IloveCBT is sarcastic: many of the uploads are anti-cbt/get.
     
  14. Firestormm

    Firestormm

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    http://www.dgstandard.co.uk/gallowa...her-on-bbc-alba-me-discussion-51311-30199422/

    Castle Douglas photographer on BBC Alba ME discussion

    Jan 26 2012 by Andrew McNair, Galloway News

    A CHRONIC fatigue syndrome sufferer from the Stewartry has appeared on BBC Alba undergoing controversial treatment.

    Kim Ayres of Castle Douglas, was filmed before and after receiving what one medicbelieves is a cure for ME.

    Dr David Mickels disputed talking therapy, which involves simple face-to-face discussion and no medication, is the main subject of the programmes shown over two Monday nights this month.

    And, although 45-year-old Kim says he is feeling much better, he admits he has not been cured ... not yet anyway.

    He told the News: I feel the treatment went well, Im definitely improved on where I was, much improved. But there is still some way to go.

    Mr Ayres, who has been suffering from the illness for five years, was contacted by producers of ME: The Toxic Tiredness, after they discovered the blog he has been writing for six years.

    He said: I have a blog which I often write about ME, as well as photography, or about family, and they seemed to pick up on that.

    Its a programme about ME in which they follow me in the process of getting Mickel therapy. It has been quite controversial.

    Nobody knows what causes ME. Its a collection of symptoms that differ from person to person. Some feel it is caused by a virus, but others disagree. No one really knows, so when someone comes along claiming to have made a big leap forward they are instantly controversial.

    Kim is one of a number of people interviewed in the programme.

    They all suffer from chronic fatigue syndrome which often makes people so tired they can not put one foot in front of the other, or even drink a glass of water.

    There are approximately 250,000 people in the UK affected by the syndrome. It is characterised by severe fatigue that can leave sufferers unable to continue with normal life.

    Some claim its roots are purely physical, occurring post-virally, while others believe that psychological triggers are involved. The truth is unclear, and there are wide divisions between the different schools of thought.

    The second episode of the documentary will be aired at 9pm on Monday.
     
  15. taniaaust1

    taniaaust1 Senior Member

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    Scotland is becoming a world leader in this stuff I believe.. finally truth is getting out.. congrats to them.

    Unfortunately the long term bedbound ones just would usually be far to ill to be doing any interviews. I know I couldnt have done one when I was in that state.

    i dont care if they include someone who was helped by Mickel therapy as long as the whole program is balanced and show others who wouldnt be helped by such a therapy. A balanced documenty would show that there are all different subgroups to this illness and we arent all alike.
     
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  16. Merry

    Merry Senior Member

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    Thanks, Firestorm, for the video. Good.
     
  17. ukxmrv

    ukxmrv Senior Member

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    The "Voices" team managed to film/interview some housebound and bedbound patients for their film.

    I've given interviews in my home dressed in nightwear (that I had been wearing continually for days).

    It would have been great if they had included just one bedbound person who had done a lot of treatment and could say just how very bad some of the NHS ones were.

    We need to be aware of the message we are giving when doing interviews. I've done so many and am used to the way I can be manipulated to give an image. With hindsight I've made mistakes in the past.

    Do appreciate that people new to interviews will not have had that experience. I'm only saying this here not to try and blame people who took part but to share my experience. We all make mistakes. I certainly did.
     
  18. allyb

    allyb Senior Member

    I have just watched the Scottish BBC ME documentary.

    I too was heartened by the fact that we got media coverage about ME and thankful that it was probably more balanced than we have previously had (which isnt much per say) but it seems we have become sooooo grateful for the meagrest of offerings.
    I was however; I have to admit I was a little disheartened. There wasnt much about real science; biomedical research or ICC. For us who live daily with this debilitating illness, it was at least not bias or hurtful and it got aired which has to be a huge positive.
    But I would say there is such a thing as untruths by omission. (Which is the opposite of spin?) Frustrating when there is so very much to be said. For example, everyone featured could walk around outside and were pictured doing a lot of that, they could sit there upright. (I wish) There was nothing about orthostatic intolerance or POTS. Also the lad who recovered, said he "was determined which insinuates or could be interpreted that maybe... we are not. Dr Sheppard stipulated that it is a multi system disease but such references were kept so brief. We all know through our own research what his means but would the masses that we are desperate to reach; hear, understand or take this on board? As has already been pointed out, more airtime was given to Dr Marr as she wandered a little.

    I also admit that I await part two with a smudging of dread, for the therapy to cure all and the man who says it's brought on by stress. Most of my stress comes from not being taken seriously (ironically not enough to raise my blood pressure sufficiently to stay upright!!) Yet quacks like him that make it onto such programmes and this hinders progress and colours public perception.

    How can you talk the disease out of the basal ganglia? If I myself, as a highly qualified counsellor, were to say that I could use my psychology/counselling skills to talk my clients better from their cancer, Id get locked up (quite rightly so) In fact Id be a more than willing volunteer for Dr David Mickels to talk my blood pressure up enough to keep me upright or even high enough to register on the monitor sometimes. Next hell be saying that I have corrupted my own natural killer cells, making them passive.

    Flippant I maybe, whilst I do accept that a percentage of people may benefit from such, I dream of the day when Psychiatry and ME no longer share the same bed. :worried:

    allyb
     
  19. Firestormm

    Firestormm

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  20. Vitalic

    Vitalic Senior Member

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    What is this Mickel therapy nonsense? Is it similar to Lightning Therapy? I can't stand how the issue of tiredness is always the main focus, "toxic tiredness" etc. tired is just not the correct word to use, everyone gets tired, but not everyone has the specific set of symptoms that we do.
     

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