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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Telegraph: ME, 'yuppie flu', and why those with treatable diseases get more sympathy

Discussion in 'General ME/CFS News' started by Kate_UK, Jun 18, 2014.

  1. Kate_UK

    Kate_UK Senior Member

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    Last edited: Jun 18, 2014
    Sasha, xchocoholic, Cheshire and 2 others like this.
  2. Sasha

    Sasha Fine, thank you

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    @Valentijn, you're doing a great job on there. This seems to have been troll week.

    Just posted myself, pushing the 'donate' angle.

    It's interesting that this blog is about the psychology of not wanting to believe that others are really sick. I don't think I've ever seen a newspaper piece about us that touched on that.
    SDSue, brenda, Bob and 3 others like this.
  3. Bob

    Bob

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    Interesting article.
    I think this article isn't too bad, but it does sort of blame us for not having the illness taken seriously (i.e. we're not communicating enough 'hope'):
    Perhaps that's good advice, but i can't work out what it means really.
    Apart from those close to me, how am I supposed to give other people hope about my illness?
    WillowJ, maryb and Valentijn like this.
  4. Sasha

    Sasha Fine, thank you

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    I interpreted it as meaning that we should hold out hope for a cure, or for meaningful research progress. And I agree - people don't like to join a hopeless cause, and may be discouraged if they're being asked to support such a cause.

    We do in fact have great reason to hope at the moment. The Microbe Discovery Project, Ron Davis's new initiative, Canary in a Coalmine, Ryan Prior's documentary, the two Rituximab trials.... lots of things. I think we should be pushing the important research that is both hope-giving and needs funding - something practical that people can do.
  5. Kina

    Kina Moderation Team Lead

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    Some of the responses are just horrible. It never ceases to amaze me how truly ignorant people can be.

    I loved this comment @Valentijn

    Bob, Sasha, SDSue and 5 others like this.
  6. xchocoholic

    xchocoholic Senior Member

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    I didn't come to the same conclusion as the author did or relate to much of what the author considers "normal" behavior.

    But I couldn't condone anyone being hurt for any reason. I would hope that others like me with a gentle nature would've refused to participate at all.

    As far as participants being less sympathetic for the victim who was paid less than the others, I'd be thinking the victim was desperate for whatever cash they were getting. Not feeling like they deserved a beating. Who thinks that way ?

    Is it possible that this writer is interpreting social behavior based on the their point of view as opposed to considering all possible scenarios ?

    Or is it possible that the title came before the article and this person's theories were misrepresented as facts ?

    Tc .. x
    WillowJ, Firestormm and Wildcat like this.
  7. IreneF

    IreneF Senior Member

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    When I read about psych experiments, I always wonder who the participants are--college students or adults who have independent lives. I think it makes a difference.

    People want to help cute kids with disabling conditions, but they are less positive about uncute adults who ought to know better. The mentally ill, the obese, the alcoholic or drug addicted, people with HIV, .... They should just pull themselves together and get over it, or they should have been more careful, eaten their vegetables, etc.

    We also don't like people who whine. When you are always sick, you are a whiner.
  8. AndyPandy

    AndyPandy Making the most of it

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  9. maryb

    maryb iherb code TAK122

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    ditto:thumbsup:
    Bob and Valentijn like this.
  10. Cheesus

    Cheesus Senior Member

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    Oh dear I looked at the comments :rolleyes:
    Bob, Sidereal, Wildcat and 1 other person like this.
  11. A.B.

    A.B. Senior Member

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    A bunch of people who don't know what ME/CFS is, explaining the behavioural model of ME/CFS they thought up in about 10 seconds. Someone thought ME/CFS is the tiredness experienced by a workaholic that doesn't get enough sleep.
  12. SDSue

    SDSue Florida

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    Wow, @Valentijn , you exhibit a lot more patience than I could.

    Those who are aware of their ignorance are capable of rational discussions and debates. Those who are not, like the idiots you're dealing with, are far more dangerous (and, unfortunately, also more vocal).

    This is one of very few diseases which cannot be "fought" using sheer will, strength of character, and physical conditioning.

    That alone makes us appear as martyrs and victims, unwilling to help ourselves, rather than the enormously courageous people we have to become. And, like the article says, the martyr is the most despised.

    The internet has spawned too many insecure cowards, spilling forth vile from behind a veil of anonymity - what sad and little people.
    natasa778, Bob, Sasha and 4 others like this.
  13. Cheesus

    Cheesus Senior Member

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    I'm generally a peace loving guy. I don't wish ill on anyone. But what I do wish is that some of these people could walk a week in the shoes of someone suffering from even only mild or moderate ME. It is just astounding that they throw so much effort into undermining something that they can't know anything about.

    They really must lead sad lives. As I said in one of my comments, I feel sorry for them - to have such a closed heart leads to an extremely painful existence. Only that which fits their psychological model can pass through, and all the rest becomes clutter of the soul that they must navigate every waking moment of their lives. To go seeking these obstacles and to give them further energy is masochism indeed.
    Bob, Firestormm, PennyIA and 3 others like this.
  14. SDSue

    SDSue Florida

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    If there is any gift to having ME, it's that I've become a kinder, gentler human being, able to feel pure joy at simple things. I wish for these harsh people that they, too, will eventually meet their breaking point; without it, they are doomed to that painful existence.

    My former impatience at slow drivers, people in line at the grocer who pulled out their wallets to slowly, etc, makes me sad. I wonder how many of them were struggling just to get thru that task, only to fall into bed once home, too ill to emerge for several days.

    If a cure is found, the world will be a much better place for having us rejoin it - carrying with us the torturous and valuable lessons we've learned.
    Sasha, Firestormm, Cheshire and 4 others like this.
  15. xchocoholic

    xchocoholic Senior Member

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    Do you think the title makes it look like we're just looking for sympathy ? And that's what people are reacting to.

    Can you tell I don't like this article ? Imho, it looks like it was written to provoke an argument. I'm not a writer but I'm familiar with authors using certain terms, esp in a title, to get attention.
    Haters on the web are easily provoked into hate speech.

    Fwiw, I hate it when people sympathize with my illness. Empathy, meaning they understand I have limitations just like everyone else, is different.

    Thanks to all who've posted informative info about ME in the comments. I doubt you'll change the mindset of those determined to remain ignorant but open minded people will learn from this.

    Tc . X
  16. Valentijn

    Valentijn Activity Level: 3

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    I'm a bit surprised actually. One "ME doesn't exist" guy is now an "Okay, it exists, but a lot of people must be faking it" guy :jaw-drop:
    Bob, Sasha, SDSue and 2 others like this.
  17. Cheesus

    Cheesus Senior Member

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    Yes you're absolutely right. I lost my temper a bit and actually said some things which could actually be really cutting if they hit a nerve. That was a mistake.

    I think this poem sums up so beautifully the sentiment you just made:



    That last line is inscribed deep in my soul. Out of the mud blooms the lotus.
    daisybell, Bob, Jerry S and 4 others like this.
  18. SDSue

    SDSue Florida

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    @Cheesus Beautiful. Thanks for sharing.

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