New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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"Don't tell cancer patients what they could be doing to cure themselves" (relevance for ME/CFS)

Discussion in 'Other Health News and Research' started by Sasha, Mar 27, 2016.

  1. Sasha

    Sasha Fine, thank you

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    James Coyne linked to this excellent article by Stephen W. Thrasher about people's stupid suggestions about what his sister (who died of cancer) should have done to cure herself.

    Rang lots of bells, including:

     
    Last edited: Mar 27, 2016
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  2. Kalliope

    Kalliope Senior Member

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    Yes, that was a good one. I'll include the link from The Guardian for those who'd like to read the whole text.
     
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  3. Sasha

    Sasha Fine, thank you

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    Oops - I should have done that! I'll edit it in. Thanks!
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, I thought this was relevant to PR discussions - some home truths maybe.
     
  5. TiredSam

    TiredSam The wise nematode hibernates

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    Excellent. How to tell well-meaning people where to shove it without causing offence is an issue I continue to deal with.
     
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  6. Sasha

    Sasha Fine, thank you

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    There was an excellent and very funny blog piece that someone wrote that was mentioned on the forums a while back that would be great to print off and carry around for exactly that purpose. You might not maintain your relationship with the person afterwards but maybe that would be no great loss.

    Wish I could remember where it is!
     
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  7. BurnA

    BurnA Senior Member

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    I think the article also explains in some way why certain people without ME/CFS find it so hard to accept GET/ CBT don't work.
    It's convenient for them to think patients can try something and its very inconvenient to accept it doesn't work because then they run out of things to suggest .
     
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  8. TiredSam

    TiredSam The wise nematode hibernates

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    The problem is that in all other respects this person is very nice and I'd hate to spoil the relationship, or also sour the atmosphere in the group. I don't really mind being told that bio-resonance therapy was the answer to her skin problems, what bothers me is being told that I should try it and then having to justify my complete lack of interest (there's no point in saying "it's a load of bollocks" so I just said it's not something I feel like looking into now).

    I usually have no trouble telling deluded woo-merchants where to shove it and not caring how they react, the problem here is the rare case where I'd prefer not to damage the relationship. Haven't found the answer yet, but if I don't I'll probably end up getting increasingly direct and rude until they get the message. Maybe that is the answer.
     
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  9. TiredSam

    TiredSam The wise nematode hibernates

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    If only that were true.
     
  10. barbc56

    barbc56 Senior Member

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    Wow! Just wow!
     
  11. alex3619

    alex3619 Senior Member

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    I have found this works. Its about the only thing that does with people who are persistent.
     
  12. Invisible Woman

    Invisible Woman Senior Member

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    I have lost a few friends this way - including some with quite mild ME. It's amazing how sensitive folk can be about having their advice gently and respectfully turned down while you're not supposed to have a problem with their crap being shoved down your throat!
     
  13. Old Bones

    Old Bones Senior Member

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    Severity is not the only variable that can cause friction between friends who both have ME. Duration is also a factor. While recently diagnosed, I developed a friendship with a woman who had been ill for ten years. I was in the "unreasonably optimistic" phase, with no suspicion I'd still be impaired more than 25 years down the road. Her less-positive mindset was based on much more experience, after being knocked down over and over again.

    Although I'm not aware of having made, or expressed, any value judgments regarding her circumstances, she found my optimism irritating. She may have misinterpreted my attempts to find a solution for myself as implying she hadn't tried hard enough. At the time, I couldn't entirely understand why our friendship didn't last much more than a year. Now I do. Although our circumstances were similar, our approach was very different at that point in time. Perhaps if we'd met a few years later, our relationship may have been more successful.
     
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  14. Mel9

    Mel9 Senior Member

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    I

    We need to learn how to quickly change the subject when our well meaning friends start trying to advise us
     
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  15. TiredSam

    TiredSam The wise nematode hibernates

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    I'll try that, thanks :). If I cut everyone with deluded irrational beliefs out of my life there'll be hardly anyone left, and some of them are alright really, apart from their deluded irrational beliefs and their tendency to project their fear of death onto me. Can't really be too harsh on them for suffering from the human condition.
     
  16. Hip

    Hip Senior Member

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    An interesting approach. Graded rudeness therapy for alternative health practitioners!



    I agree alternative health suggestions can sometimes be annoying, but I think you also have to be careful not to throw the baby out with the bathwater: I had some email contact with a guy in Australia who contracted idiopathic myelofibrosis, a fatal, non curable, non treatable leukemia that the oncologist said would result in a quick death.

    But after taking 5000 mcg daily of selenium orally as sodium selenite (along with 40 grams daily of IV ascorbic acid), within 5 weeks his cancer was in full remission. This was 5 years ago.

    I was so intrigued by his case, that I felt compelled to research it further, and ended up writing a long post here about all the science I could find behind sodium selenite as a cancer treatment.
     
    Last edited: Mar 27, 2016
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  17. alex3619

    alex3619 Senior Member

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    :)
     
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  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Occasionally when someone has told me that a particular supplement might be my ticket to improved health, I've said "Wow, that sounds wonderful, but I'm broke, could you buy it for me?" Not much discussion happens afterwards!
     
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  19. leela

    leela Slow But Hopeful

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    Genius!
     
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  20. jimells

    jimells Senior Member

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    My next-door neighbor used to try to coax me out for walks in a well-meaning way, parroting the "common sense" that fresh air and exercise helps everything. He is pretty much cured of that, now that he is recovering from a gunshot wound to the abdomen and a second slug through the palm.

    Almost dying is a helluva way to find out that exercise doesn't cure fatigue.

    (He is pretty well recovered now, although he still gets tired easily)
     
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