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Australian teenager tells story of threats and mistreatment

Discussion in 'General ME/CFS News' started by MyalgicE, May 10, 2019.

  1. MyalgicE

    MyalgicE Established Member (Voting Rights)

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    A young woman with very severe ME contacted me to help tell her story. Over the past couple of months she’s told her harrowing story of mistreatment, including two visits to psychiatric facilities.

    Right now she is in an awful situation, so sick she can’t tolerate people in the same room and unable to speak.

    It’s very tough reading (let alone living), so please consider if it might too be upsetting for you to read.
    https://meaustralia.net/2019/05/10/severe-me-i-had-to-fight-the-people-supposed-to-help-me/
     
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  2. chrisb

    chrisb Senior Member (Voting Rights)

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    That's a dreadful story. Do medical "professionals" now lack the capacity to take and comprehend a history, and, if so, why are they registered to practice? Do they think that iatrogenic harm can only be caused by others? Striking off seems to be an inadequate sanction for some.
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Their training tells them to do this. Therefore the fault lies with those who created and promoted this misleading information and with those who failed in their basic duties of differentiating between ideological self-interest and credible science, especially in protecting sick people from harm that they have been made fully aware of and chose to disregard because it aligned with their prejudices.

    Raising awareness of consequences that have been warned and documented consistently will be important in future lawsuits.
     
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    It is not merely a question of training. It is the capacity to make judgments and to learn outside the delivered training. People have to be responsible for their own decisions.
     
  5. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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  6. Samuel

    Samuel Senior Member (Voting Rights)

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    cannot read for health reasons, but nuremberg might be a rough guide on "i was following orders". eichmann needed a criminal trial. "i was just saying 'sleep with the fishes'" [@jaimes] perpetrators also need criminal trials.

    separately, i implore the m.e. community as follows:

    please start to think of the big picture we face as a mass human rights crisis, fully worthy of recognition and action as such by the international community.

    [eta: the first paragraph is separate, and is only on the orders question.]
     
    Last edited: May 12, 2019
  7. Sean

    Sean Senior Member (Voting Rights)

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    Jail terms are appropriate for the worst offenders, along with permanent loss of professional licences.

    The lack of accountability for this extraordinary and relentless carnage is a fucking disgrace. :mad::mad::mad:
     
  8. chrisb

    chrisb Senior Member (Voting Rights)

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    In the middle of the night it occurred to me why I have, on the other thread, been going on about observation, assessment and evaluation, or apparent lack of them. There appears to be a major discrepancy between rhetoric and practice which needs to be explained. Practice for treatment is supposedly Graded Exercise Therapy along with CBT-though I seem to recall that GET is not recommended for the severe-I may be wrong.

    I thought the theory of GET was to observe and establish an achievable base and then have agreed, incremental changes in activity, gradually increasing the base. What is described by this patient seems not to fit that model in any way. There is no attempt to establish a base and the increases represent imposed, apparently arbitrary and inappropriate, behavioural changes.

    It does seem odd that in a case of this apparent severity one would not initially spend time trying to establish some measure of trust and rapport, before seeking to commence a "treatment" requiring persuasion. It may of course happen, but there seems to be too much consistency between the stories suggesting that it does not. Explanations are needed.
     
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  9. MyalgicE

    MyalgicE Established Member (Voting Rights)

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    @chrisb Unfortunately the warnings about the 2002 Australian chronic fatigue syndrome guidelines were ignored and the dire predictions of the old ME/CFS Australia have come true.
    http://sacfs.asn.au/about/guidelines/index.htm

    Forgive me for being a ‘broken record’ about how bad the guidelines are but this points out the worst parts:
    https://meaustralia.net/2018/11/30/...n-chronic-fatigue-syndrome-guidelines-and-me/

    This story from Sam bears a lot of similarities to what’s also been happening to another friend of mine, in my city. Unfortunately it’s not an uncommon problem in Australia and terrifies many of us.
     
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  10. chrisb

    chrisb Senior Member (Voting Rights)

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    That information is interesting, and, as you indicate, concerning. There look to be many points at which Sam's treatment appears to have been at variance with those guidelines. The guidelines may be bad but one might expect failure to comply with them, in a manner leading to worse treatment and poor outcome for the patient, would be worthy of further investigation.

    I think both Wessely and Sharpe have quipped that they were told by friends that they were too good to go into psychiatry. One cannot comment on that particular point, but there may be something in the general one.
     
  11. MyalgicE

    MyalgicE Established Member (Voting Rights)

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    It’s awful that there’s no help from patient support organisations either if you get held in psychiatric units.

    The organisations say “they don’t do individual advocacy”.

    At least in the UK there’s the Tymes Trust.
     
  12. Skycloud

    Skycloud Senior Member (Voting Rights)

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    @MyalgicE and anyone else in Australia:

    What do you think it will take to change your guideline? How influential would the removal of GET/CBT by the UK NICE be if it happens? There's the growing body of literature pointing out the poor evidence base for these 'treatments' too. How realistically can you see it changing?
     
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  13. MyalgicE

    MyalgicE Established Member (Voting Rights)

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    Good questions @Skycloud

    Short answer: it depends. Australia tends to look more to USA/NIH than UK, but lots of our GPs are trained in the UK (my current one and previous one for example) so I think UK still has an influence at that level.

    Long answer is on the way as my article on it is nearly finished.
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    I read those warnings. They were solid, well-documented and completely blown off.

    There will be legal consequences over this as this was an official proceeding and credible evidence and expert testimony was dismissed without consideration.
     
  15. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    I would complain about your profane language if it weren't so true. ;)

    The physicians are arrogant idiots. :mad:

    I hope you are correct, but am not holding my breath.
     
  16. Inara

    Inara Senior Member (Voting Rights)

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    Not understanding that they wouldn't be doing individual advocacy.
    But I think they intuitively grasp how difficult it would be to take that path, although it would be an effective path.
     
  17. sea

    sea Senior Member (Voting Rights)

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    At the moment Andrew Lloyd is considered by the government to be the “expert” to consult on this illness. The government likes that it can deny disability pension and the national disability insurance scheme on the basis that ME/CFS is not permanent and can be cured with CBT and GET. There’s a groundswell to get accurate information and change but it’s an uphill battle.
     
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  18. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I read a horror story about a child with ME in the Australian system after being taken from her parents. It must have been over twenty years ago.

    Horrendous it is still happening, but Lloyd was the expert then as well.
     
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  19. sea

    sea Senior Member (Voting Rights)

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    Yes, sadly he has played his game well and it is only in more recent years that many patients have become aware of what he believes about this illness. He seemed to start well with the Dubbo studies, but his conclusions soon changed. When infection couldn’t be found and he had input from the UK psychiatrists he changed to believing the illness is perpetuated by inactivity and false illness beliefs.
     
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  20. Skycloud

    Skycloud Senior Member (Voting Rights)

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    @sea Thanks, much as I thought.

    edit much
     
    Last edited: May 15, 2019
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