ME Patient: What I'm really thinking...

Discussion in 'General Discussion' started by Seanko, Apr 16, 2016.

  1. Seanko

    Seanko Well-Known Member

    The British newspaperthe Guardian has published a piece on as part of their series "What I'm really thinking..." on ME.
    What I'm really thinking: the ME Patient


    "I have myalgic encephalomyelitis. If you think it is hard to say, try living with it every day.

    Yes, I understand that your aunt had chronic fatigue, and that she took some B-vitamins and is all-better now. No, it isn’t adrenal fatigue because that doesn’t exist. Oh yes, how fantastic that your friend’s friend was really tired after a virus, but she tried acupuncture and cut out wheat and dairy from her diet and next week she is running the London marathon.

    I don’t have what they probably had, you see, because only 5% of people recover from myalgic encephalomyelitis. It is sometimes called chronic fatigue syndrome, but that’s a bit of a misnomer. I’m not just tired. The paralysis was the first worry. Then all the muscle pain. Then the memory loss. Then losing the ability to speak without stuttering. I started to forget what words meant. Or who my boyfriend was. Then the fatigue came to kick me when I was down. Then the nausea. Then the constant, unrelenting joint pain, headaches, and flu-like symptoms.

    Ah yes, I know. You were so tired last weekend, you just fell asleep on the sofa. But were you so tired that you slept solidly for 22 hours and then spent an hour getting from your bedroom to the bathroom and back again before sleeping for another 22 hours? I thought not.

    I’ve improved a lot in eight years. But I’ve been told this is as good as it gets. I will never recover unless medicine has a breakthrough. And I have accepted that, so why can’t you? I appreciate your sympathy. Your advice and suggestions are well meant. But please, back off."
    Last edited: Apr 16, 2016
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  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That's pretty powerful.. So has the British press gotten better on ME/CFS in the last couple of years?
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  3. Seanko

    Seanko Well-Known Member

    In a word: No. The quality of all health stories is pretty low. The Guardian also printed a good piece by David Cox a few weeks though. The positive coverage in quality US papers such as the New York Times, Wall Street Jornal & Washington Post will have been noticed

    I have personally been trying to interest some of the more responsible journalists in the illness & the recent research progress via Twitter along with one of the charities. Problem is some of the more hysterical advocates have been too, which puts the writers off & plays onto the unbalanced mental illness stereotypes :/.

    There is the upcoming decision on the release of the PACE data by the Information Commissioner' s Office (ICO). Queen Mary University London (QMUL) appealed against their ruling to back the release of the figures. Hopefully the initial decision will be upheld.

    If the ICO decides in our favour, THAT will be a big story. :)
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  4. Who Me?

    Who Me? Well-Known Member

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  5. weyland

    weyland Well-Known Member

    Did the journalists tell you that or is that just your opinion?
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  6. Empty

    Empty Well-Known Member

    I have seen a few of your hysterical ideas like this @Seanko peppered into posts:

    "Problem is some of the more hysterical advocates have been too, which puts the writers off & plays onto the unbalanced mental illness stereotypes :/."

    I am a writer. I have seen no hysterical advocates (bar whatshisname).
  7. Strike me lucky

    Strike me lucky Well-Known Member

    You cant escape it unless drugged out for a sleep. Otherwise we wake up with it, we make dam adjustments for it during the day, our whole life revolves around this shit and not because we want too.

    Besides a few symptomatic treatments one can get from your dr, you're up the creek without a paddle.

    Like being in prison chalking up another day on the wall. That poor guy with 4 days chalked up thinks he's getting out soon, yeah right ? His little white arse cheek he his. Haha.
    Tony L and Who Me? like this.