Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Article:New hope for those with chronic fatigue syndrome - Columbia University

Discussion in 'General ME/CFS News' started by aimossy, May 23, 2015.

  1. aimossy

    aimossy Senior Member

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  2. duncan

    duncan Senior Member

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    Ah, another chronic fatigue article.

    It's disappointing again to read that the "full-blown syndrome" amounts to only "persistent lethargy, headaches, muscle pain, mental fogginess, and sleep problems."

    In the real world, degrees matter, levels of intensity matter. They speak to QoL, and so they need to be portrayed completely and accurately.

    If an author of an article or study is going to speak to ME/CFS, then I wish they would speak to the full spectrum, and that needs to run the gamut from moderate disability to catastrophic and bedridden. Anything else may prove to be a disservice, and might only serve to re-enforce appalling misconceptions of the disease, and the impact it can levy - regardless of the author's intent.
     
    Last edited: May 23, 2015
  3. Bob

    Bob

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    @duncan, I know the wording isn't perfect, but we're always going to have issues with exact wording, and descriptions of the disease, when articles are written by non-specialist journalists. Once you get past the sloppy description in the first paragraph, then it's clear that the article is written in good faith. And there is some good stuff in it that everyone at Columbia University will read if they read the magazine..

    For example...
     
  4. duncan

    duncan Senior Member

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    Yeah, Bob, we are going to have to disagree on this one. Good faith doesn't cut it when Columbia U's magazine is involved. Hornig should have had some governance or influence, I'm thinking, considering the publication, and unless I'm wrong, she should have characterized this disease more accurately - or helped spell it out for the author.

    Or we can assume the author ignored some of her input. Either way...
     
    Last edited: May 23, 2015
  5. Bob

    Bob

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    I'm not sure that we're disagreeing. I don't think I disagreed with anything you've said. I just pointed out that there's some good stuff in the article.
     
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  6. SOC

    SOC Senior Member

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    I suspect you've never had a chance to talk to the media. ;) She very well could have characterized the disease more accurately and spelled it out to the author.

    See here for what happens to unsuspecting scientists who talk to the media. :p
     
    Last edited: May 23, 2015
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  7. duncan

    duncan Senior Member

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    Understood, Bob.

    Perhaps it goes back to something I'd written earlier about degrees.

    Yes, there is some good stuff here. But considering it is Columbia University's magazine, I'd think the standards of simply representing the disease as it may present, inclusive of levels of incapacitation, would have been fielded better.

    SOC: good point! lol. But I used to deal with the press on a regular basis before I got too sick. This omission should not have happened, imo.

    I do appreciate what you both are saying. It's just that sometimes a given journal only has one time to present to a given audience - and a writer should assume that each time he/she addresses a subject, it is that singular opportunity.
     
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  8. justy

    justy Donate Advocate Demonstrate

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    I have to say 'lethargy' and 'fogginess' don't characterize my illness 'physicians can struggle, she says, to distinguish it from depression, bipolar disorder, and other neuropsychiatric conditions that have similar symptoms. Hmmmmm.....
     
  9. aimossy

    aimossy Senior Member

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    I'm going with the good stuff here, although completely sympathise with Duncan's frustration. It isn't that often you have an article about our illness in these magazines, or one that talks about this illness as biological in origin with respect to their own research into it. I feel personally that it is a beginning.
     
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  10. alex3619

    alex3619 Senior Member

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    Its not just the reporter. Should the reporter have put in more clarification, it might have been removed by the editor.

    We do need better discussions of this disease, one of the reasons its usually not taken seriously is that people don't know we are often sicker than MS patients, or often in extreme pain or exhaustion, being fed from tubes, on oxygen, or that we can die.

    However this is slow process. Finding a writer who at least isn't off beam means we have found someone it might be worth communicating with, politely.
     
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  11. Bob

    Bob

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    Well, it's true that many people with ME are originally diagnosed with depression, and Fukuda can select depressive patients. So physicians do struggle to distinguish ME from depression etc. But, yes, I agree that's not a helpful comparison. We always have this sort of problem with journalists who are unfamiliar with writing about ME. There are so many potential pitfalls when writing about ME.
     
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  12. duncan

    duncan Senior Member

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    Polite is good, especially when dealing with writers. Each criticism I used to get cut me to the bone, despite all my efforts to develop thick skin. Writing is great, but it can suck, too.

    I think I have been adamant, but hopefully not rude, should the author be reading. If you are reading, please do a follow-up article...:)
     
  13. Gijs

    Gijs Senior Member

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    The primair problem isn't in the immune system at all! It is in the nervous system.
     
  14. SDSue

    SDSue Southeast

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    Somehow that link isn’t working for me but curiosity is killing me!
     
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  15. Forbin

    Forbin Senior Member

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    I wonder sometimes if, under certain circumstances, the immune system can becomes "confused" if it has to deal with multiple acute infections simultaneously, or, perhaps, just one oddly prolonged infection. Say you get the flu and, just as the immune system starts to wind down, you became infected with another virus - or, say you think you're over the flu but the immune system has to ramp up again because it wasn't entirely successful the first time (perhaps you tried to return to your normal routine too quickly).

    I don't know if those really are unusual challenges for the immune system or not, but I have wondered about it. When I became ill, initial tests suggested that I still had viremia even though it was about a week after I felt I had already recovered from a pretty bad case of the flu. By that point I had returned to normal routine... and that's when I got hit with ME.
     
  16. mfairma

    mfairma Senior Member

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    I agree with Duncan.

    As patients, we have become pretty inured to bad and, more often, abysmal coverage of ME. While there are good elements of this article and it at least doesn't suggest the disease is psychogenic, we should hold coverage of this disease to a higher standard, particularly when it comes from an institution like Columbia. I don't say this to criticize the author (or Mady, for that matter), however, as I recognize the difficulty of learning about this disease given such widespread misinformation.

    Articles that quote wild prevalence estimates, list inaccurate and generally trivial-sounding symptoms, and regurgitate the lie that the lack of progress in this disease is a product of disease complexity, rather than political and social bias and disinterest, advance us very little, to my mind. It is not enough that people eventually come to believe that chronic fatigue syndrome (or some twisted version of ME in which chronic fatigue is the defining symptom) is real and serious.

    For coverage to make the right difference in changing medical and societal perceptions of ME, it needs to introduce the right framework for understanding the disease right up front, otherwise readers will just see what they read in the context of their own presuppositions. This is particularly true when it comes to doctors, who often hold deeply rooted stereotypes about what "CFS" is. As others have noted, that means describing the disease accurately, and right up front. It means not just describing the right symptoms and accurate estimates of prevalence, but explaining how severe can be their impact, that the sickest patients are bedridden and may struggle even to brush their teeth, as Duncan noted. For articles about ME more broadly, it means explaining right up front the distinction between ME and CFS -- that ME is a terribly devastating disease that has been seen and studied as an organic disease since the 1930s, but was recast as a psychological disease following the outbreaks in the late 80s -- and being very clear that the former is the entity being studied.

    When an article sets the wrong tone in the first sentence, you can be sure that those who bother to read won't come away from it with the impressions we wish.

    I definitely agree that this article is better than what we've seen in the past, but it's a far cry from the sort of coverage that will lead people to understand just how badly HHS has managed this disease and just how desperate are patients for hope and relief of suffering. Not every article need tick every box, but we should expect and demand clearer and more accurate coverage than this.
     
    Last edited: May 23, 2015
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  17. SOC

    SOC Senior Member

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    Darn! I was trying to link to post #1187 in our Joke of the Day subforum
     
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  18. Bob

    Bob

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  19. jimells

    jimells Senior Member

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    @duncan as a writer, is it fair to say that the opening paragraph is the most important?
     
  20. duncan

    duncan Senior Member

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    @jimells that's a general rule, but it's not cast in concrete. It may be more important in pr (public relations and marketing) stuff, i.e., you only have so long to reel in your audience. ;)
     
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