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 Gilderdale's story in today's Daily Mail in the UK

Discussion in 'General ME/CFS News' started by richvank, Apr 14, 2011.

  1. richvank

    richvank Senior Member

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  2. Nielk

    Nielk

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    I just finished reading this article. It left me utterly, totally speechless.
     
  3. garcia

    garcia Aristocrat Extraordinaire

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    Sadly Rich I doubt it. This story is several years old now and nothing has changed in the UK.

    The only way things are going to change if we stop playing nicey-nicey and start using some of the radical tactics that groups like "Act Up" pioneered in the 80s. Power never concedes anything without a great struggle.
     
  4. ukxmrv

    ukxmrv Senior Member

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    I can't see any good coming out of it Rich. Everything has been said before. It may help family members who assist in suicides but I'd rather see the focus being on the awfulness of ME that drove the poor person to feeling suicidal. I'd rather that people worked to make our lives bearable than cleaning up the mess once we are gone.
     
  5. garcia

    garcia Aristocrat Extraordinaire

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    I agree 100%. Before looking at the right to death, we should be asking about the right to life. The right to live with dignity and appropriate medical care. Rights which ME/CFS patients are currently denied.
     
  6. Sasha

    Sasha Fine, thank you

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    I'm more optimistic. When Kay Gilderdale's court case was on, the focus was overwhelmingly on the "right to die" issue with the ME as an incidental issue; at the time, a lot of people making comments on newspaper sites said they found it hard to believe that she had ME because she clearly had something serious!

    However, Kay is now in a position to talk at length about the severe nature of her daughter's ME and how appallingly she was treated in the NHS and that she believes that this was because medical staff can't cope with severely ill people whose tests keep coming up negative. All three of those points are immensely valuable to us and Kay is an extremely sympathetic figure who is getting acres of coverage on these issues in the sort of human-interest story that is of great interest to everyone.

    Anything that helps shift opinion in our favour is a help and if medics read this as well, great. I hope that this will help us.
     
  7. jenbooks

    jenbooks Guest

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    Okay.
    What was in that vaccine?
    Either it had an infectious something, or she had vulnerable genetics so that her immune system collapsed in the face of the TB vaccine.
    Why is anyone calling that ME?
    Why isn't anyone looking at vaccine injuries? Why did she even have to get a TB vaccine at 14? Was there active TB in her school??????
     
  8. Tulip

    Tulip Guest

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    The vaccine caused ME - ME is acquired central nervous system damage, it is not post viral syndrome. Check out dr byron hyde's definition on ME.

    http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
     
  9. jenbooks

    jenbooks Guest

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    I disagree. Since Baxter was found mistakenly putting live bird flu in its swine flu vaccine...which got caught before it could get out...I am not convinced vaccines aren't simply contaminated with bad stuff. Or the adjuvants in vaccines might derail the immune system (squalene, aluminum, etc). Or, that there is a subset of people who are vulnerable to ME from a vaccine. Therefore, why the *heck* should that be glossed over? People should be looking at what vaccines are necessary. Why did she get a TB jab? It probably wasn't necessary at all. I just read today about a 14 year old girl who got the gardisil vaccine and has been destroyed by it.
     
  10. justinreilly

    justinreilly Senior Member

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    I'd look at it as she had ME. Her trigger/cause was the vaccine (a virus in the vaccine, an adjuvant or just an insult to a sensitive immune system). For example, she may have had a latent HGRV or DeFreitas retrovirus infection and then the added co-factor of another virus in the vaccine pushed the balance against her immune system. Another possible scenario would be there was a retrovirus in the vaccine which directly caused her ME. The vaccine obviously was a major cause of her ME.

    I don't know a lot about vaccines, but from what I know, vaccines need to be really looked at much more seriously, but obviously a corrupt/incompetent NIH doesn't want that.
     
  11. currer

    currer Senior Member

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    Everyone will praise Kay Guilderdale for her courage and dignity in a dreadful situation.

    Unfortunately there are many severely ill children with CFS/ME who are not cared for in the NHS.
    When a new disease appears in children, a population group that is naturally fit and healthy, it is a public health alert and should be taken seriously.
    I cannot imagine why it has been thought safe to disregard this simple rule in CFS/ME.

    It is very unfortunate that CFS/ME has been managed as a financial problem rather than a medical problem for so long. It reflects a widespread infiltration over the past thirty years of money values into areas that cannot be evaluated in such terms.
    Medicine has its own "value", like the arts, science and academia, which cannot be translated into monetary values and the attempt to do so disintegrates the efficacy, coherence and integrity of this area of human endeavour.
     
  12. ukxmrv

    ukxmrv Senior Member

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    Mrs Gilderdale appeared on a TV program in the UK called "this morning". (I've not seen a link to it on youtube or anywhere yet).

    Sadly, they concentrated once again on the suicide and trial. Kay Gilderdale was very good, calm and dignified.
     
  13. LaurieM

    LaurieM

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    Until 2005 the TB jab (BCG) was basically compulsory for children in the UK. I remember a nurse visited my school back in the early 70s and everyone in my school year was led into room and inoculated - no options were given to opt out!

    It was then dropped because it was seen as ineffective.

    http://en.wikipedia.org/wiki/Bacillus_Calmette-Gu%C3%A9rin#Uses

    Laurence
     
  14. Angela Kennedy

    Angela Kennedy

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    Yes- yet again. The case seems to be useful to those pushing assisted suicide and legalised euthanasia. I have to ask - is Kay Gilderdale, apart from being calm and dignified, actually saying much about the conditions that drove her daughter to commit suicide, and how this is happening to people across the country as a result of the illness and the way sufferers are treated?
     
  15. garcia

    garcia Aristocrat Extraordinaire

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    Sadly I have to agree with this. She is a woman with a compelling story, but she is not an ME advocate in any way/shape or form. Every time she mentions or gets asked about "assisted suicide" everything she has said about ME up until that point is completely forgotten by the viewer/listener.

    I wish we lived in a society where a person's right to life (& quality of life with access to healthcare) was deemed more important than whether or not they have the right to commit suicide.
     
  16. ukxmrv

    ukxmrv Senior Member

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    I think that this morning it dawned on Kay Gilderdale that they would be steering her into that direction. She started off by saying that she wanted to talk about ME but all their questions were on the suicide and the aftermath. Saw it on her face that she wasn't comfortable with the "one direction" of it all. Don't know if she is going to do any more interviews but after today I think she knew how hard it is to change the emphasis.

    Not sure what is in the book of course and if there will be any further publicity.

    I felt awful for her. The interview was so tactless, insensitive and I don't think she got across what she wanted to say. She'll need to be more assertive and I don't know how she would cope.

    The life of Lynn (before the night of the suicide) and all she went through was lost in that interview and the R4 one. Don't know about the 5live interview.
     
  17. 5150

    5150 Senior Member

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    this compares to US Veterans Administration policies


    My health care is in the US Veterans Administration system. I have been sick with ever-increasing symptoms of ME/CFS.

    For 20 years , the VA has run "all the tests they can do", and of course I appear to be a healthy person to them. Meanwhile (you know the story), I am terribly ill and each year more progressively so.

    They certainly don't want to hear anything about"chronic fatigue syndrome". I had one meeting with the Infectious Diseases Dept. which found nothing. After the Science paper was published and xmrv was in the fore, I asked for another appointment via my managing Dr. and was told that the ID would not grant another appt as there was no new development in my case. Meanwhile I have tested + from WPI.

    The policy of the VA seems to be: they want nothing to do with chronic fatigue syndrome or Gulf War illness, or whatever is vaguely defined to them. Anybody unfortunate enough to be as sick as I am (and all the Many Others also are), well ,we are just screwed(so to speak). They will take each individual symptom and send me to that clinic where nothing is ever resolved, but to consider that there is an underlying cause to Everything and it may be a retrovirus? just isn't their way of doing things. My illness does not exist to them.

    Meanwhile, I am edging toward dying and this is the truth. It's worse all the time. My healthcare system avoids the subject.

    It feels a little bit like what you unfortunate people in the UK are experiencing.

    Sorry, I hope this did not hijack the thread. It's just that there are all too many similarities in my health care situation with the sad story that we read about that ended in a tragic way. It is alarming, truthfully.

    added: just want to emphasize this post isn't meant to be about me/myself ; rather it's intended to show the widespread devastation caused by government agencies that will not engage this disease.
     
  18. Angela Kennedy

    Angela Kennedy

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    Thanks for letting us know about this Ukxmrv. Unfortunately I think it does confirm my worries. With no disrespect to Kay Gilderdale, 'calm and dignified' may not work and she may indeed need to be more assertive, if the purpose of her book/TV appearances is to show how ME and the mistreatment of sufferers destroyed her daughter's life to the point she wanted death.

    Currently (whatever our differing views on euthanasia/assisted suicide) - the Gilderdale publicity now is related to an upcoming televised assisted suicide at 'Dignitas', with Terry Pratchett advocating it, apparently. It is very easy to gloss over ME and mistreatment by the psychs. We have already seen this in the BMJ with Sandthouse's 'Gilderdale case very rare' pangloss article.
     
  19. Min

    Min Guest

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    from her book 'One Last Goodbye':

     
  20. Nielk

    Nielk

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    5150,

    I am so sorry for everything you have gone through. It's disastrous how the VA has neglected you for 29 years! It's so frustrating when you know how sick you feel and you are denied medical care.
    Now that you have tested positive for XMRV, can't you show them the results and try to get them to give you some anti virals? I'm assuming that lacking other medical insurance, you can't afford to go to an MD privately?

    I hear your frustration and really feel bad for you. I am not knowledgeable how the VA system works but can you maybe go to another clinic?

    Maybe someone else on the forum can come up with a good solution for you.

    Hang on,
    Nielk
     

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