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My life got taken away from me - what it's really like to suffer from CFS - Telegraph, Sept 2016

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Sep 5, 2016.

  1. AndyPR

    AndyPR Senior Member

    More at http://www.telegraph.co.uk/women/he...way-from-me---what-its-really-like-to-suffer/

    I was going to post this in the Naviaux study media stories thread but it's more an article that was printed because of it, rather than being about it. Although the article is good, and the pictures are of the PwME herself, bizarrely the Telegraph thought that a motivational video of a performance coach talking about, I guess, normal fatigue, would make a good insert into the article, no explanation to it, just crowbarred into the text. :bang-head:

    ETA: Following Dr Shepherds request, detailed a number of posts below, the Telegraph subsequently removed the video :thumbsup:
     
    Last edited: Sep 5, 2016
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  2. Kalliope

    Kalliope Senior Member

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    It was a well written text. I was about to share it with the quote "If you've ever been on the receiving end of the stigma CFS comes with, you never, ever forget it". Then I saw the video... WTF?!? :eek:
     
  3. charles shepherd

    charles shepherd Senior Member

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    This feature in today's Daily Telegraph was done in collaboration with the MEA.

    As is fairly standard practice when working with the media on this type of human interest feature, we do not have any editorial control over the wording or what additional information or links (including the video) are provided.
     
  4. JaimeS

    JaimeS Senior Member

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    Note the fact that the caption states that the individual was "working 75 hours a week when she developed CFS."

    Uh, is it POSSIBLE to work 75 hours a week? ....wellll, yes, it's between 10 and 11 hours a day. But it's a very interesting fact to throw out there, especially below her image.

    -J
     
  5. Sidereal

    Sidereal Senior Member

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    Kinda reinforces the stereotype of type A overachieving yuppies with insatiable appetites for success working themselves into exhaustion.
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    Though of course if she was doing bugger all then it would unlikely to help the case for the defence either. :rolleyes:
     
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  7. Sidereal

    Sidereal Senior Member

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    Of course. Damned if you do, damned if you don't.
     
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  8. JaimeS

    JaimeS Senior Member

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    Yeah, it's amazing how you can get away with reinforcing both stereotypes at once. Both seem truthy to the public.

    -J
     
  9. Luther Blissett

    Luther Blissett Senior Member

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    In defense of the Telegraph video, I suspect that they have some kind of automated video matching for keywords in an article. Cheaper than employing a person to do it.
     
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  10. worldbackwards

    worldbackwards A unique snowflake

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    Working an absolutely normal working week? Clearly you have anxiety issues stemming from your inability to break away from the stultifying confines of a boring, humdrum existence...
     
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  11. Oberon

    Oberon Senior Member

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  12. charles shepherd

    charles shepherd Senior Member

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    Exchange of correspondence with Daily Telegraph - video now removed

    Attention: DT online health features
    Dear Daily Telegraph online features
    Re: http://www.telegraph.co.uk/women/he...way-from-me---what-its-really-like-to-suffer/

    Firstly, can I thank the Daily Telegraph for publishing this very helpful coverage on the subject of ME/CFS - which the MEA helped with last week in relation to finding someone who was willing to provide a personal account of her illness

    The article by Hannah is receiving very positive feedback on the ME Association Facebook page:
    https://www.facebook.com/ME-Association-171411469583186/

    As well as on other social media discussion forums

    There is, however, a frequent complaint being made by our members, which I agree with
    This involves the insertion of a video about fatigue that is not relevant to the sort of activity and exercise induced muscle and brain dysfunction experienced by people with ME/CFS

    Could I therefore suggest that you either insert a general video about ME/CFS - such as the one I did for NHS choices:
    http://www.nhs.uk/Video/Pages/CFSexpert.aspx

    Or a specific one on treatment:


    Regards
    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    Our Ref: 1041252

    5 September 2016

    Dear Dr Shepherd,
    Thank you for your recent communication to The Telegraph.

    Further to your enquiry, thank you for taking the time to bring this to our attention and we are pleased to hear that our article is well received. I can confirm that the video has now been removed from the article in question.

    Yours sincerely,
    Katie Archer
    Editorial Compliance Executive
    Telegraph Media Group

    Dear Katie

    Thank you for dealing with our concerns so swiftly

    Regards
    Charles Shepherd
     
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  13. Kalliope

    Kalliope Senior Member

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    :thumbsup::)
     
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  14. JohnCB

    JohnCB Immoderate

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    Sure. On North Sea oil platforms the standard week was 7 x 12 hour shifts. Normally worked as a fortnight on and a fortnight off. The fortnight off was mine, holidays, except that travel days cut into that. This was the 1980s. As I was working for an outside contractor, I was nominally working days and did not have anyone working the night shift. OK, the 12 hours includes a lunch break.

    There were times when I was called out in the evening or even dragged out of my bed. As there was nothing else to do, I often worked overtime voluntarily. In those days, the oil company was happy to pay whatever I worked. For my fortnight rotas I was regularly booking in excess of 100 hours a week. Might as well get paid for the time you are there. I did 5 or 6 full fortnights. This was several years before I had symptoms of ME, in retrospect, and it was another 5 years before I had to give up work and realised that I had actually been ill those 5 years. I returned to more normal hours once that contract was over.

    ETA: That's how I know that ME "fatigue" is entirely different to normal fatigue. After coming home I would crash out for a while, then perhaps go down the pub. After a good night's sleep I would have a quiet day. After that I would be raring to go again. One time when I got home to snow everywhere, I found a last minute booking and went to Malta for a week.
     
    Last edited: Sep 5, 2016
  15. JaimeS

    JaimeS Senior Member

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    Nursing schedules are similar; some folk choose to work 10 or 12 hour shifts, but only a few days a week, and crash out again on the weekends.

    But the point is that they chose that caption for her to further link the idea of general over-exertion or 'stress' to developing ME.

    I think a lot of people would report experiencing a more stressful time of life around when they first noted symptoms.

    I'm willing to bet the same is true of every major illness ever. When did you get your first attack of MS? "Graduation". When did you first notice cancer? "That month I lost my job and was getting a divorce, and I passed out during an argument." Yet no news article seems to mention infection, childbirth, or injury as a major stressor alongside emotional challenges in ME.

    And of course no one says "divorce causes cancer". We, however, appear to be special. ;)

    -J
     
  16. *GG*

    *GG* senior member

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    Interesting story, thanks for sharing! I am sure you miss the money you had then :(

    GG
     
  17. luminescencs

    luminescencs

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    Gold.
     
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