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(not a recommendation) Brave Mark hopes TV show appearance will inspire others - Ulster Herald

Discussion in 'General ME/CFS News' started by Sly Saint, Oct 1, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    from the Ulster Herald:
    "
    A BRAVE Omagh boy who has ME hopes his upcoming appearance on Children in Need will help inspire young people to ‘live life to the fullest’.

    Even though Mark McAnulla is only 13-years-old, he has courageously battled the side-effects of his ‘myalgic encephalomyelitis’ for the past two years, and he is determined not to let the illness stop him from being a fighter!

    He and his mum Aine will soon be a part of this year’s ‘Countryfile Ramble’ for BBC Children in Need – and needless to say, Mark can’t wait to explore what’s known as the most dramatic mountain pass in the Mournes.

    The pair will be joining Anita Rani and a group of Countryfile viewers as they ramble through the beautiful Hare’s Gap on October 6."

    full article here:

    http://ulsterherald.com/2018/09/30/brave-mark-hopes-tv-show-appearance-will-inspire-others/

    eta:
    "
    As such, Mark was introduced to the Koram Centre for Counselling, Psychotherapy and Psychosocial Support in Strabane and happily through the centre’s Art Therapy programme, Mark’s mental health and sleep has greatly improved.

    The Koram Centre currently receives a grant of £35,261 from BBC Children in Need, over three years, to fund an Art Therapist, who provides counselling and creative therapy to children and young people who are experiencing behavioural or emotional difficulties."

    can someone look into this. @Keela Too @JoanNI
     
    andypants, Hutan, rvallee and 4 others like this.
  2. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I often think the phrase "side-effects" is used when what is really intended is "effects" (Edit: or symptoms).
     
    Last edited: Oct 1, 2018
  3. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Oh dear!
     
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  4. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Email sent to the journalist.

    Hello Victoria,

    I noticed your article in the Ulster Herald about “Brave Mark”, a young person with ME, who wants to inspire others with his recovery story.

    First I want to say that I am absolutely delighted to hear that this young man has managed to recover sufficiently from ME to attempt the challenges you write about.

    However many with ME remain devastatingly ill despite incredible determination. So, I would like to ask you to write carefully when you talk about Mark’s “determination not to let the illness stop him”. Indeed, I wrote a plea to journalists a couple of years ago on just this matter.

    The original post is here, but I’ve copied the text below this email for your convenience: http://sallyjustme.blogspot.com/2016/07/recovery-determination.html

    If you would like to know more about ME, please contact local charity Hope 4 ME & Fibro NI, (hope4mefibro@outlook.com) or consider attending their meeting in Newry tomorrow night (Tuesday) when David Tuller DrPH of Berkeley University will be speaking about the flawed research behind the “exercise yourself well” advice offered to ME patients.

    More detail of this event: “One of the Greatest Medical Scandals of the 21st Century”, can be found here: https://www.eventbrite.co.uk/e/the-...ets-50445889012/amp?__twitter_impression=true

    I hope you will attend. I plan to be there too.

    Thank you for considering the issues I am raising. It is wonderful news that Mark is doing so well. I hope his health continues to improve.

    Kind regards,

    Sally Burch
    ME patient advocate and occasional blogger.

    Copy of blog post: “Chronic Illness & "determination to recover”

    The press love recovery stories where the long time ill - through sheer determination and will power - make themselves well again.

    These stories run with patient comments such as, "I was determined not to let this beat me." or "It was a very difficult journey, but I triumphed in the end." The statements themselves are likely true, but the press will often imply that the tenacity of the patient was the major key to recovery.

    So what about all the people that remain chronically, and often severely, ill? Are they simply not determined enough to elicit their own recoveries?

    Of course I understand the need for journalists to make the subject of their stories heroic, and therefore remarkable, but there must be other ways of doing this than implying that strength of character and determination alone are sufficient to overcome serious illness?

    Actually this line of thinking is not just insulting to the patients who remain ill, but also to the many doctors and researchers involved in bringing effective treatments to patients. Often the fact that a new drug, or change in treatment, coincided with the turning point in the patient's attitude is down played, and the reader is left supposing that any illness can be over come with good mental fortitude.

    The message is subtle and repetitive. It is also incredibly damaging.

    Those who live with intractable chronic illnesses are often regaled with these popular recovery messages by friends and family. Well meaning folk get convinced that recovery would be just around the corner if only the sufferer would just "think more positively" and "believe that recovery was possible"!

    Worse however, is the way this concept affects attitudes wherever a chronically ill person goes!

    The cynical "if only you'd try harder" attitude now seems to be the official line for benefits assessments. The ongoing problems with Employment Support Allowance (ESA) and Personal Independence Payments (PIP) assessments being particularly problematical.

    And here the media has influence again.

    This time by vilifying patients by "catching them out" doing something they should not be capable of doing according to the benefits they receive. In these articles journalists can be especially cruel, often using a photo captured in a single moment as their evidence, ignoring the fact that one single moment may not represent the real truth.

    Gradually public opinion of the long-term ill and disabled changes. The chronically ill are now labelled as either heros, or layabouts.

    Media heroes have their praises sung high. In these stories the heroic individuals either: use their strength of will to recover from their condition; or they have a visible disability, manage to achieve something outstanding, and are described as an "inspiration to all".

    Unfortunately, those who remain long term ill without much hope of recovery, and especially those who don't have immediately obvious disabilities, don't get hero treatment in the media. Sadly it is then assumed they must fall into the category of "layabout".

    This dichotomy might not be as a direct consequence of all those media spun recovery stories, but they do have influence.

    Recovery stories where the patient is the hero, might appear to be applauding the character of the now smiling recovered individual, but I can't help thinking that the flip side of these stories - the implication that anyone could recover if their character was simply stronger - is unacceptable.

    I'd love to see mainstream media stories focus more on the treatments themselves, and on how lives can be changed by them, than on the personal attributes and positive thinking of an individual.

    Journalists - if you are reading this please consider that these stories, written with the best of intentions, are actually contributing to a bigger narrative - one that puts blame on all the chronically ill folk that don't recover. This can also lead to less public sympathy and greater difficulty in finding funding for proper research into medical treatments.

    Many of us are determined to recover. That determination is of course fantastic. It gives us strength to see through difficult treatments, or to campaign for change. And I've no doubt some positive thinking can help with coping with a restricted lifestyle. However, please, let's be realistic about the place of "determination" in effective healing.

    Thank you.

    ***
    Related:
    Well Enough to Drink Coffee? May 2015
    Work-Sick Divide? March 2016
    Little Rant about "Positive Thinking"! Jan 2015”

    Sent from my iPad
     
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  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Brilliant response @Keela Too i hope she takes notice. Would be great if she actually turns up at the talk tonight.
     
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  6. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Tomorrow night ;)
    But yes, it would wouldn’t it
     
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  7. NelliePledge

    NelliePledge Moderator Staff Member

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    Fingers crossed for a silver lining to this cloud
     
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  8. JoanNI

    JoanNI Established Member (Voting Rights)

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    Brilliant email Sally. I may give the newspaper a ring too. What a damaging article, whatever the truth of the story is.
     
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  9. JoanNI

    JoanNI Established Member (Voting Rights)

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    Success I think. I spoke to the editor, he said the information was sent in a press release from Countryfile and their interest is only because it’s a child in N.I.
    He asked for a write up about tomorrow night and they will consider running it.
    Nigel the editor may benefit from a copy of your email directly Sally.
    editor@ulsterherald.com
     
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  10. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I’ve sent this email to Countryfile (hope it was the right email address)

    “Hello Countryfile Ramble organisers.

    My attention was drawn to an article in the Ulster Herald about a young ME sufferer who is going to attempt one of your rambles. I am a concerned about it. ME is a disabling disease, where exertion beyond the individual’s energy envelope can have devastating and long term after effects. ME cannot be overcome by either determination nor positive thinking.

    So, I am writing to ask you to be very careful about how you might talk about this young ME sufferer and his determination to complete the Countryfile Ramble.

    It is generally not helpful to ME sufferers to have their condition described as one that can be “overcome” by will power and determination.

    I have copied below a link to the Ulster Herald article, and the email I sent to the journalist who wrote the article. I hope this way my concerns will be made clear, and that the Countryfile producers will be mindful of the issues I am raising.

    Thank you for consideration. I wish you all a very successful Ramble.

    Best wishes,

    Sally Burch
    ME patient advocate and occasional blogger.

    PS Countryfile would also be most welcome to the event in Newry tomorrow mentioned below.”



    I then copied the email I sent to the journalist below that!
     
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  11. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Edit: Okay it’s away now Countryfile@bbc.co.uk

    [Meh! I keep getting undeliverable on that.
    Does any one have a working email for them]
     
    Last edited: Oct 1, 2018
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  12. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Done
     
  13. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    @keela

    I don’t know how you manage to compose such a coherent and balanced push back to the media circus while dealing with mecfs. Thanks for doing that, it’s something many of us cannot
     
  14. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Thank you for that vote of confidence- I appreciate it. Xx
     

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