Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers

Discussion in 'General ME/CFS News' started by Tom Kindlon, May 14, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    Naomi Chainee’s covering note from Facebook with this very good article of hers

    Naomi is a better writer than me. Not sure how much credit I should get. Also a few people gave input on my responses to her so thanks to them.
     
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  3. BurnA

    BurnA Senior Member

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    “The same 'Surprise! It’s real!' headlines have been appearing periodically for over 10 years.”

    This is a great no nonsense article.
     
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  4. A.B.

    A.B. Senior Member

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    I really like this article. I'm tempted to say it's the best summary I've ever read.
     
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  5. sarah darwins

    sarah darwins I told you I was ill

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    Cornwall, UK
    Victim-blaming perfectly exemplified in the puff piece put out by Essex CFS Service and just discussed elsewhere:

    Thread: http://forums.phoenixrising.me/inde...e-self-promotion-for-me-awareness-week.44606/
     
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  6. Esther12

    Esther12

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    I thought it did a good job of tying a lot of different issues into one narrative.

    One problem - I don't think that this is Sharpe saying that CFS patients are undeserving of care:

    It's difficult to illustrate the problems with the approach taken by Sharpe/Wessely/etc concisely.
     
  7. A.B.

    A.B. Senior Member

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    Sharpe defended himself saying that this was a quote from a book. But the reference is so obscure and the wording has changed that it's hard to avoid the conclusion that Sharpe wants to say something while escaping responsibility for it.

    See http://fumblings.com/weblog/archives/2005/11/a_response_to_m.html
     
    Last edited: May 14, 2016
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  8. Bob

    Bob

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    England (south coast)
    I think that's an exceptional overview of the situation. A great piece of work. Quite an accomplishment. Must have taken a huge amount of work, time and effort to write.
     
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  9. Esther12

    Esther12

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    In the context of the talk he was giving, I don't think your reading is right. He's built his career on 'caring' for patients with CFS! I did think that was a good blog though.

    edit: Also, the term 'undeserving poor' is pretty commonplace (at least in the UK), and is normally taken as a criticism of attempts to use problems with the way some of those in poverty may behave as a reason to not attempt to assist them. This is complicated by the way that many people now use the term when they themselves are putting forth reasons why those in poverty are less deserving of help than might be assumed... almost as a way of shielding themselves from the criticism. I think it's a complicated one, but that this quote is not a great one to use in isolation.
     
    Last edited: May 14, 2016
  10. Chrisb

    Chrisb Senior Member

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    It is not just the "undeserving sick" comment. There is also "...yet refuse to be placed into and accept the stigma of mental illness".

    One would not normally say of someone, without qualification of the remark, that they "refuse" to do something if it is believed that they have just cause or excuse for doing so. Refusal suggests the defiance of proper (or, indeed, improper) authority.

    It may merely be that the language used is infelicitous and that the words were not intended to bear the interpretation given them by some. One would, however, be excused for thinking that if only patients would accept the "stigma of mental illness" they could receive the treatment deemed appropriate.
     
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  11. A.B.

    A.B. Senior Member

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    He also said

    “Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment.”

    You know, one can say a lot of things without outright saying them. Here's another Sharpe quote:

    “It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do,"

    Of course anyone can make up their own mind about Sharpe, whether he is just really clumsy with words or tortures language in an attempt to subtly express his disdain for patients.
     
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  12. it's sly doublespeak on the part of Sharpe, Wessely etc
    study them, listen to them
    Almost always they put in a "get out of jail free" excuse/clause in what they say, knowing they need such as one day they know it's going to blow up in their faces and they'll need to say "but we were misunderstood! Read what I said back then, see?"

    always sly digs at patients, condescension, arrogance, and setting up ways to avoid blame.
    classic pattern of narcissistic sociopaths!
     
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