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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Kay's reponse after Eamonn Holmes's "This Morning" interview, 15 April 2011

Discussion in 'General ME/CFS News' started by drjohn, Apr 16, 2011.

  1. drjohn

    drjohn Senior Member

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    Kay has asked me to make it clear, on her behalf, especially on social networking sites, that she did not think Eamonn Holmes was unfair on her with tough direct questions.

    In fact, she said it was good he asked them because she had, for example, received feedback from parents of youngsters with ME who were worried that she was encouraging them to give up and take their lives. Eamonns questions allowed her to address that.

    As far as using the dreaded term, Yuppie Flu, he intended to point out that that was what it used to be called, but that things had moved on since then. Unfortunately, he was interrupted by Ruth and the conversation took a different course. She says she is sorry the interview wasnt the best it could have been but we must not attack individuals who are doing their best.

    We shall do updates here and on Twitter
    http://twitter.com/#!/MeFreeForAllOrg

    Best wishes
    John
    drjohngreensmith@mefreeforall.org
    ME Free For All.org
     
  2. Enid

    Enid Senior Member

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    Thanks for letting us know drjohn - under the awful circumstances Kay is being superb for us all and much admired.
     
  3. anniekim

    anniekim Senior Member

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    Thanks also for letting us know - I second Enid's comments, I have deep admiration and gratitude for all Kay is doing under such dreadful circumstances. I am currently reading her book, it's heartbreaking.
     
  4. garcia

    garcia Aristocrat Extraordinaire

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    Dr John,
    many thanks for the update. It is difficult to criticize Kay Gilderdale, because she has been through so much, and as you say she is doing her best under very difficult circumstances.

    Having said that IMHO one can not on the one hand advocate for assisted suicide and also be an effective advocate for ME. The ITV "This morning" interview most clearly showed that since at the end of the interview when asked by Holmes what she would like to see done Kay spoke about "assisted suicide" not ME. My disease gets precious little media time as it is in this country, and when it finally does get some it is relegated to a 2nd-class issue by "assisted suicide".

    "Assisted suicide" has plenty of advocates from Debbie Purdie to Terry Pratchet. ME has no-one famous advocating for it.

    Without examining ME as a medical issue, with possible treatments, one is left feeling that "assisted suicide" is the solution to ME. Indeed I know of one ME patient who was advised by well-meaning "friends" to kill herself.

    It seems that talk of "suicide" and "assisted suicide" is no longer taboo in this country. Talking about ME as a medical disease sadly still is taboo.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Garcia
    to be blunt, ME is an issue of outright bigotry, you cnanotuse derogatory terms for nonw-hites, or for folks' religions any more an dnot get censored severely
    but you can for ME...why?
    deliberate campaign to make the disease seem a "joke, lazy scroungers, hysterics, they deserve what they get"
    thus folk can make a living off talking utter lies and crap about it, and abuse us even to the point of torture, incarceration and murder by neglect.
    Sound familiar?
    Sigh
     
  6. Angela Kennedy

    Angela Kennedy

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    Anything I say here is not intended, in any way, to attack Kay, Lynn or the Gilderdale family.

    I am concerned that the Gilderdale case will be used to promote involuntary euthanasia in the long run. I am currently against voluntary euthanasia because proponents have never addressed adequately the 'slippery slope' argument, which sadly, has actual precedent (the ideology in Germany when the Nazis came to power, which led to the open secret of the involuntary euthanasia of disabled people programme which became part of the fabric of bureaucratic process). At the time, voluntary euthanasia and involuntary euthanasia of 'unworthy' lives (one of the characteristics of that being unable to work!) were conflated by doctors, government, and many 'ordinary' people. This is detailed in Michael Burleigh's book Death and Deliverance.

    Currently, anyone promoting euthanasia or assisted suicide, resorts to attacks on opponents and poo-poohing the extremely important (and precedented) 'slippery slope' problem. This does not inspire confidence, especially in the times we live in, especially in the UK, where people have killed themselves because of the current attacks on welfare, and black satirical comedy about ATOS providing euthanasia packs are doing the rounds, indicating the concerns people justifiably feel.

    If Kay Gilderdale is promoting assisted suicide, she will inevitably find herself with critiques from the ME community. Even people who kept concerns about assisted suicide/euthanasia to themselves during her trial in order not to prejudice her case will not be able to swallow any promotion campaign. And they won't be "attacks on people doing their best". They will be justified concerns.

    As the mother of a seriously ill young woman who has been as ill as Lynn Gilderdale and is having to face similar losses in her life, my worry is that when I am dead, my daughter will be mistreated and in danger of exhortations to commit suicide, if secret involuntary euthanasia processes are not already in place. This community knows only too well how uncanny, astounding you-never -thought-it would- happen mistreatment and cruelty is the order of the day when it comes to 'treating' people with this illness.

    On the other hand, I see how euthanasia opponents have panglossed over the horror of ME/CFS. They often have no understanding of the illness either. Either way, people with this illness are left vulnerable and their suffering discarded. I have recently seen a comment from Simon Wessely from the late nineties, where he says of ME/CFS sufferers something to the effect of "but these poor creatures suffer the tortures of the damned" then goes on to dismiss the suffering with reference to beliefs etc. and historical descriptions of 'neurasthenic's' characters in highly dysphoric terms. Wessely's comment has really troubled me. It looks like satire. For various reasons, medical characterisations of this illness has led to trivialisation of this illness in the lay press and elsewhere. People are just not understanding the suffering of this illness.

    I hope Kay Giliderdale reads this. I hope she understands why I might be concerned. It appears she may have had similar feedback, and I respect her defence of Eamonn Holmes 'tough questioning', because I suspect from what I've seen he was worried about the euthanasia issue. I will definitely read her book when I can afford to buy it.
     
  7. garcia

    garcia Aristocrat Extraordinaire

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    Great post Angela. I agree with everything you said. Unfortunately you are right to fear what you do.

    I was horrified to hear recently of one very vulnerable woman with ME who was advised to commit suicide by "well meaning friends". It is shocking. I can't but help blame the media for instilling a climate where talk of "suicide" and "assisted suicide" has become so normalized that people are able to recommend it to each other as a "solution".
     
  8. ukme

    ukme Senior Member

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    I think I have to agree with garcia in that I would rather that Kay Gilderdale would use her high profile to speak about ME rather than assisted suicide. This is not a criticism, just a wish on my part. However to be fair it is assisted suicide that the media are zoning in on.
     
  9. drjohn

    drjohn Senior Member

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    Hi Angela, I speak for myself too. I am in favour of assisted suicide, based on this logic: Since it is legal to commit suicide (it was, once, illegal - though I can't imagine what sanctions could be taken against anyone who broke that law), I cannot see why anyone, who is unable to take their own life, cannot appoint someone to do it, just as they might get them to do a more mundane task like shopping or gardening and, if someone is prepared to do it, they should, therefore, nor should they be committing an illegal act (as Debbie Purdy is lobbying for). In Lynn's case, it was abundantly clear, for years, that it was her wish to die. We must be concerned about vulnerable people but I think they can be protected by the law, in the same way anyone could be protected from scams, for example, without denying those who to wish to be helped a legal right too. Those opposed to anyone taking life are not always motivated by religious views, for example, life is God given and only God can take it away; some atheists also hold that no human being can take a life, no matter how well-intentioned their motive. No one, I know, who holds the view that there is always palliative care has ever answered the question, "What would you do, when all known options of treating unbearable pain had been exhausted and a loved one looked into your eyes and begged you to help them die." (I saw Sir Terry Pratchett, who has Alzheimers and is also known to favour assisted suicide, get irritated with a man sitting alongside him in a debate, evade this question too). I believe there are ways to be as sure as one can be - "beyond all reasonable doubt", the law tradionally accepts, I think. Every day this goes on without a solution, more and more people suffer, are thrown on their own resources, have to defy laws, risk imprisonment. It is, undeniably, a tough moral and legal question. I shall make sure that Kay sees your argument too. Best wishes John
     
  10. drjohn

    drjohn Senior Member

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    They shouldn't be allowed to get away with it, by law, Silverblade, as you say. But it would be preferable to just educate people so that imposing a law wouldn't be necessary and anyone who held those views would, themselves, be the subject of ridicule.
     
  11. drjohn

    drjohn Senior Member

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    Pleasure, Garcia. I am posting Kay's views here, as she asked me to do because she is not so familiar with some tools like Facebook and Twitter and wanted to reply. So these are her views. Coincidentally, I believe we happen to share most (if not quite all) opinions about (1) the interview and (2) assisted suicide -- see my response to Angela Kennedy. One thing that has concerned Kay (and I and many others share this) is that the admittedly important issue of assisted suicide - which should be publicly debated - might eclipse the public awareness of M.E. generally and Lynn's case in particular. Cheers John
     
  12. drjohn

    drjohn Senior Member

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    Thanks Enid and Anniekin. I think Kay already has an idea of the love and admiration there is for both her and Lynn but I shall make sure that she doesn't miss a drop. Best wishes John
     
  13. Angela Kennedy

    Angela Kennedy

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    I think, John, that people on 'both sides' are very willing to sidestep the most important issues around this debate. I come from a place of 'we know how easy things can be abused, and the law often cannot protect people from the interests of oppressive power holders'. We see evidence of this all the time, this community is a prime example of that situation.

    I have no problem with REAL free choice- even for suicide. The issue is when people are coerced, manipulated or exorted to end their lives, and there are enough precedents to show that proponents of assisted suicide cannot understand this, and make vague references to 'the law will protect', and that is what worries me, because the evidence shows the law often does NOT protect the vulnerable, especially when the vulnerable's interestes conflict with powerful others, such as the state.

    As for someone looking into my eyes and pleading with me to help them kill themselves. I will face that straight on- no sidestepping for me. I've actually talked about this in depth with my daughter (let's face it, many people here will be facing life or death issues, won't we?). She said to me "you'd tell me to go to hell!" And I would. She believes she would never ask me- and I stress, her disability has been extremely severe and her losses catastrophic (and remains so- though slightly less). But that is my and her decision, discussed in depth between ourselves, and is not necessarily relevant to whether the UK in its current neoliberal obsession with hatred for disabled people is in a fit state to pass just and suitably protective laws allowing assisted suicide but preventing its abuse of disabled people.

    One thing I will ask, as I have come to ask all proponents of assisted suicide: What do you know of the T4 Aktion programme for euthanasia of disabled people in Nazi Germany? Have you read Michael Burleigh's 'Death and Deliverance', about this? Until people understand the full implications of how easily 'voluntary euthanasia' can become 'involuntary euthanasia' and how the Nazi programme, far from being a historical aberration, could all too easily be repeated: their understanding of the issue will be sadly incomplete.
     
  14. currer

    currer Senior Member

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    I agree absolutely with Silverblade, garcia and Angela on this one.
    I too. am very concerned by the recent enthusiasm for euthanasia in the press. Silverblade is quite right about our status. I have frequently thought that our status in society,(unconsciously, and not acknowledged such) is that of the present day scapegoat, just as the jew under the nazis.
    In a capitalist age being unable to work is the most despised and unwanted situation, and the current inhumane welfare "reforms" reflect this unacknowledged hatred of the sick and disabled. (If that were not so, the sick would be given enough to live on. Could it be that they dont want us to live?)

    It is naive to assume that any weak or despised group in any society can be adequately protected by the law from abuse where euthanasia is concerned, especially as I suspect the future is going to be harder for us all owing to climate change and reduced agricultural production.

    I also believe that this euthanasia enthusiasm exists because so few in modern society have experience of chronic illness or disability, are very afraid of becoming ill themselves, and do not believe that many with these disabilities can still value and enjoy their lives. Those promoting euthanasia might change their minds if they had the experience of becoming ill themselves. So it is also fuelled by inexperience. But just as dangerous, nevertheless.
    I think we are all safer with the law in its current state, untidy though it is.

    I also agree with an earlier post by garcia where he says our primary right is surely for treatment and research, not death. No-one will criticise Kay, who is an outstanding woman, but these interviews are concentrating on the wrong aspect of this case.

    In fact there IS a religious aspect to this debate, however you want to interpret "religion". My experience was that people are just as valuable sick or well, and that life has an intrinsic value to it that cannot be reduced to utilitarian assessments. The loss of some kind of religious aspect to this debate makes it easier to repeat the mistakes of the past. The germans in 1930 did not realise where thier political philosophy would lead them. Much about nazism was rather new-agey and idealistic. They wanted a pure, healthy society, without any ugly or useless elements. Unfortunately life is a muddle of all types of experience, not always "good" or comprehensible, and much cruelty comes about trying to force reality into a human concept of what it should be.
    Euthanasia enthusiasts want to "tidy up" human suffering and because it is incomprehensible, eliminate it. We have no right to assume life should be comprehensible.
     

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