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Gary Burgess - 'My illness has shown journalism can be a force for good'

Discussion in 'General ME/CFS News' started by Sly Saint, Mar 8, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "
    Journalism’s a funny old trade. It’s sometimes difficult to get a sense of what difference, if any at all, your reporting is having.

    Indeed, in my experience, a lengthy and difficult investigation that uncovers a scandal or wrongdoing can illicit less feedback than a quirky ‘and finally’ story that took a matter of hours to film.

    But that’s not to say those big stories don’t matter.

    On that basis, I had no expectation of what would happen following my appearance on ITV News a fortnight ago to share my own piece of news. I’ve been off full-time work for more than a year now after falling ill with ME/CFS.

    It’s a little-understood condition characterised by pain, fatigue, brain fog, and a disproportionate response to any form of exertion. In short, overdoing it can leave me bed, or house-bound. The difficult bit is learning a new way of living to stay the right side of my new reduced limits.

    It’s a work-in-progress… but I’m getting better."

    rest of article here:
    https://www.itv.com/news/channel/2018-03-07/my-illness-has-shown-journalism-can-be-a-force-for-good/
     
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  2. Trish

    Trish Moderator Staff Member

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    Good article, @Gary Burgess. Thank you for continuing to raise awareness.

    If I may nitpick a few points in case you are able to edit -

    paragraph 2 should be 'elicit' not 'illicit'.

    'It’s a work-in-progress… but I’m getting better.' is ambiguous. Do you mean you are getting better at pacing, or that you are recovering? I think this may be unintentionally misleading, giving the impression that it is normal to 'recover', when full recovery is actually, sadly, pretty rare.

    'and Jennifer Brea - whose Oscar-nominated documentary Unrest charts her own ME story.' Technically it was shortlisted, not nominated.
     
  3. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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  4. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    @Gary Burgess I get very concerned when I read 'getting better'.......as Trish said, so many of us don't get better, in fact most with ME as defined by ICC criteria do not recover. Some get worse. I am almost 2 years in, use a wheelchair, partially bedbound, cannot function as a mum to my kids. ME can be fatal. Are you aware of the case of Sophia Merza, who died from ME in the UK in 2005? Her story is harrowing. I think you are wonderful in all you are doing and a complete gentleman here on the forum. I feel bad criticizing but the whole 'getting better' angle is very dangerous for us. Of course, I hope you are improving etc..... However, If we can get better by ourselves, the take home message is ME ain't that serious and why would we need medical treatment for a disease if it can be resolved naturally?
     
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  5. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    Thanks @Sunshine3. I'd suggest you re-read my article.

    The words 'getting better' followed a sentence about how I am learning new ways of living with my symptoms. And I am getting better at learning new ways of living with my symptoms.
     
  6. Trish

    Trish Moderator Staff Member

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    Thanks Gary for clarifying that. I thought that was probably what you meant. Apologies for my nitpicking post - not helpful when not asked for.
     
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  7. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Thanks Gary. I just had flashbacks to Martine McCutcheon. Appreciate the clarification.
     
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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    Also... fingers crossed that Gary will genuinely recover. For people who've been ill less long, they do seem more likely to go on to just naturally recover, or gain real improvements over time (a the same time, many do not, so I don't want to encourage false hope). It must be difficult placing oneself in the limelight like this, and when talking about our personal experiences we will often have things which are unusual compared to other patients, or could lead to people misunderstanding what ME/CFS is like for most patients. These sorts of things are just a part of personal stories.
     
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  9. TiredSam

    TiredSam Moderator Staff Member

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    You will not be able to say "I'd suggest you re-read my article" to the average non-informed reader on the internet. The may well skim over "getting better", or indeed the whole article, and be left with the impression that ME is something that improves because of your choice of words, whatever you meant. They will probably never come back to read any rewordings, explanations or corrections. So please find another way to express the idea that if you're very lucky you might be able to not feel quite so shit all the time by accomodating the illness, but that nearly everyone is still stuck with it for life with no hope of real improvement until the research funding and narrative changes dramatically.

    You're choice of the phrase "getting better" is a small point, but an important one. Maybe if you'd written "I'm getting better at it" instead?

    I've just realised I'm trying to tell a journalist how to suck eggs. Don't mean to, very appreciative of all you're doing.
     
  10. Allele

    Allele Senior Member (Voting Rights)

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    Thank you again, @Gary Burgess. You are doing such a fantastic job at transforming a crap circumstance into education, empowerment and awareness. Keep it comin'!
     
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  11. Trish

    Trish Moderator Staff Member

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    I remember back to when I'd only had ME for a year, it already felt like an eternity. I'd never been ill for so long, and I didn't want to know that some people had it for decades. That was 28 years ago.

    I think there is much more hope for Gary and others just starting with ME. Back then Wessely and his cronies were just taking over our world. Now they are being shown as the charlatans they are, and some real research is happening.

    Gary and others helping to spread the word are part of that change for the better. The more the public learn that we have a real illness that needs research and proper care and support for patients the better.
     
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  12. Peter

    Peter Established Member (Voting Rights)

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    I think we all agree that language and words can be difficult, especially in a short text. That may be the case for most things, but given the history of ME, many words and sentences gets touchy. Not strange at all, because ME-patients are aware that words is not just words - it matters with direct and often devastating effect. Gary has clarified what he actually meant with the “getting better” part. And many thanks for your work.

    And here follows a way to long comment.. Since the words “getting better” was read in several ways, let’s hypothetically relate them to the disease itself. This is important, cause I strongly believe that “new” patients must be very aware of what not to do. That can obviously reduce some suffering and improve prognosis. Many of us had no idea, we didn’t get sound advice, not a good combination. In hindsight - if we just knew then what we know today!

    Prognosis of ME is not an easy read, but there are lessons to learn. If ME is fully developed and of some length, - getting (much) better/recovery is rare, often not the case. The reality of the essential number of today’s ME-patients, is at best stabilizing a very difficult situation, but many do progress negatively. That is the facts. It is hard thinking of patients that have endured decades of this extreme cruel disease. Now 13 years here. And god bless the very few of the above mentioned patient that fully recovers.

    the same time - there is a whole lot to learn from the history - that can have huge impact. There is a fact that many ME-patients have come out extremely bad in the acute phase of the disease. It cannot be stressed enough how damaging this can be in the long run. The causes of this is simple: when needed, patients met no sound medical advice, often the opposite and directly damaging ones. And what do most people/patients do? They cope and manage best possible. The latter is important, but the “just go a long” (coming from a doctor) is also a major problem. Thousands, millions of experiences of this approach, know that this was completely wrong, making it absolutely bonkers in the short run, destroying a real chance of improving much in the long run. The pushing trough cycle in the early stages can and will often be the absolute tipping point.

    So the message from “old” patients to Gary and other “new” patients and the patients of tomorrow, must be: learn from the grim history. Don’t underestimate the damage that can be done following the principle of “just go a long as best as you can”. The experiences and empirical data is overwhelming. What makes this difficult in the real world, is that most patients are to strong and good at doing just this, in that sense they’re own worst enemy when we surely know that you can’t push your way through ME and expect to restore health.

    Unfortunately old ME patients didn’t learn anything important from doctors when needing advice at most. The effect is devastating. But times are changing. Let’s hope the pretty obvious, that new patients in near future will meet knowledge when seeking it by medical advisors. Until then - take notice from history. Take great care. Pacing is the striking factor that must be practiced with extreme cautiousness for a longer period in the early phase. That will be your best investment ever when coming to the chance of getting better/improving and restoring health in the long run.
     
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  13. Joh

    Joh Senior Member (Voting Rights)

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  14. Nellie

    Nellie Senior Member (Voting Rights)

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  15. Trish

    Trish Moderator Staff Member

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    Hi @Peter, welcome to the forum. You make a good point about getting the right advice when new to ME. So many of us 'old' patients had the wrong advice - all my doctor told me at the start was to get on with life as best I could. And other doctors along the way have often tried to advise me to get more exercise and not to rest too much. Sadly both very bad advice. It took me a long time to learn the hard way.
     
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  17. Trish

    Trish Moderator Staff Member

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