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‘Help Holger now’ video about a Swedish man with very severe ME

Discussion in 'General ME/CFS news' started by mango, Jun 8, 2020.

  1. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    10,280
    Yes. Commit a serious crime and you can be free to wander about for months or longer.

    Commit the crime of having ME and you can be whisked away on the say so of someone who knows little or nothing about you.
     
    rainy, Helene, MEMarge and 9 others like this.
  2. Midnattsol

    Midnattsol Moderator Staff Member

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    3,574
    Or "just" be left with little to no help from the medical community, while your condition is ignored and minimized.
     
    Helene, sebaaa, Ariel and 4 others like this.
  3. mango

    mango Senior Member (Voting Rights)

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    According to what his brother shared earlier, the psychiatrists who assessed Holger at the hospital in December concluded that Holger's problem is not of a psychiatric nature.

    Holger's doctor is on summer holiday now, so he's apparently not involved right now. His input has apparently been ignored so far.

    None of the two doctors who have initiated the sectioning has met Holger.

    Absolutely horrifying.
     
    rainy, Helene, cfsandmore and 17 others like this.
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    10,280
    Rather that than sectioned, kept in a wholly unsuitable environment and given "treatment" guaranteed to make matters worse.

    Sadly, sometimes there are worse things than being ignored.
     
    rainy, Helene, MEMarge and 12 others like this.
  5. Braganca

    Braganca Senior Member (Voting Rights)

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    What can be done? Can Swedish RME hire a lawyer?? Is anyone helping the family legally to fight? This is horrifying..
     
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    12,299
    Location:
    Canada
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,637
    It is at times like this one feels so helpless.

    Do many in the whole edifice of medicine understand that cases like this are a significant disincentive for people with severe ME to interact with the medical system? How is it possible in the twenty first century that people claiming to act in a patient’s best interests can enforce harmful changes to their environment and care and enforce harmful interventions on their patient against their will?
     
    rainy, Helene, Trish and 12 others like this.
  8. chrisb

    chrisb Senior Member (Voting Rights)

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    4,602
    It would be interesting to know whether that is a coincidence, or part of the plan.

    edited some spurious words. I wish I had not lost the ability to proof-read.
     
    Last edited: Jul 9, 2021
  9. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    150
    Rare for it to be a coincidence
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Location:
    London, UK
    I do not want together involved in discussion of an individual's diagnosis and management. However, I would urge people to stop and think whether the arguments being used here are sound.

    If ME is a serious condition affecting the brain, perhaps 'neuroimmune' as claimed by some organisations, then we have every reason to think it will have neuropsychiatric complications. MS, Alzheimer's, Huntingdon's disease, Parkinson's, severe hypothyroidism, lupus and a score of other diseases affecting the brain produce psychiatric disturbance. Why should ME not include psychiatric features. IF it is a neurological condition affecting brain we should expect that.

    If ME is not in fact a neurological illness that can generate psychiatric problems then we come back to the fact that we have no idea what it is. The endless debate about it being biomedical helps nobody much because physicians have nothing to offer. I do not see that physicians can be blamed for offering nothing if they have no idea what should be offered.
     
    Last edited: Jul 9, 2021
  11. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    The concern is I think that he will be treated as if he suffers from delusional illness beliefs that must be cured by GET and ignoring everything he says.
     
    Sarah94, rvallee, lycaena and 8 others like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Location:
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    I can see that this is the concern but in the context of a case like this it seems to me extremely unlikely. I have first hand family experience of psychiatric care of inability to eat of psychiatric origin. Some of the care was bad and some good enough to save a life.

    If someone is being sectioned the diagnosis will not be ME so treatment is unlikely to be GET. I think there is a danger in jumping to conclusions in relation to individual cases.
     
    TiredSam, FMMM1 and Peter Trewhitt like this.
  13. mango

    mango Senior Member (Voting Rights)

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    What arguments would you suggest instead?
     
  14. mango

    mango Senior Member (Voting Rights)

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    What do you base this on? Have you actually followed the story from the beginning? What makes you think it would be different this time, compared to last time?
     
    Sarah94 and lycaena like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The sort of scientific arguments that S4ME is so good at. Based on a clear line of thought about the pathophysiological possibilities.
     
    FMMM1 and mango like this.
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think we have already said too much about an individual case. I have explained what I base my comments on.
     
    FMMM1 likes this.
  17. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    On page 1 of this thread

    Exactly as expected, the patient and family is ignored and the psychiatrists think they can rehabilitate the patient. The outcome will probably be the same as in all the other cases where this has been tried. A traumatized patient that's even sicker and a family that has lost trust.
     
    rainy, Sarah94, Chezboo and 10 others like this.
  18. mango

    mango Senior Member (Voting Rights)

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    OK, you don't want to discuss this further, I understand. It was a genuine question on my end, though. I honestly can't see any reason at all to believe that this situation, after all that has happened so far, would suddenly and spontaneously make a 180 and turn into something that would actually help Holger instead of continuing to harm him, traumatize him, and violate his human rights. I hope I'm wrong about that, of course. But I feel there are way too many red flags, a few examples:

    As Holger's brother has shared before, the psychiatrists allegedly believe they can cure Holger in a few weeks, provided they can section him/treat him behind locked doors.

    I believe a fair question would be: why won't they offer to treat him at home, while respecting his legal right to informed consent and to be an active participant in the planning of said treatment?

    Is sectioning in a psychiatric ward commonly presented as the first and only option for severely ill people potentially suffering from malnutrition, but with a different main diagnosis than ME; for example cancer, MS, lupus, Parkinson's..?

    Why are they so adamant that his family needs to be kept away from him during treatment? In Sweden close family members have legal rights when it comes to information, participation and support (if the patient has given their consent).

    What's the evidence for the planned treatment, and what are the risks? What other alternatives are there? Does the treatment take PEM and the risks associated with over-exertion into consideration? Has Holger been given this information in a way that makes it possible for him to understand it, assess the risks, and to decide for himself if he wants to give his consent - in line with his legal rights?

    So far they have kept ignoring Holger's needs relating to his illness, which is a violation of his legal rights as a patient. They are denying his ME diagnosis, which is a major patient safety issue. They are denying him accomodations in relation to PEM, sensory sensitivities etc, also a major patient safety issue. They are denying him the practical support that would allow him to communicate his needs, wishes etc to the healthcare providers (for example allowing a family member to be present, or hiring an appropriate interpreter), which again is a violation of his legal rights as a patient.

    And so on.
     
    Last edited: Jul 9, 2021
    rainy, Sarah94, Chezboo and 10 others like this.
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Location:
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    Just some general points.

    One is that I have already made it clear that psychiatric treatment can be bad as well as useful. That is a very real problem but it should not be confused with saying that psychiatric treatment is inappropriate for what may well a neuropsychiatric problem.

    Psychiatric treatment tends to step up from simple approaches to sectioning when things are looking very serious. Severe malnutrition is very serious. My family member was sectioned at this stage.

    Also I was told not to visit, despite the fact that everyone was agreed that I was well aware of everything relevant to the case and doing my best to help. It is not until one gets involved in a situation like this personally that one can see just how difficult it is. None of us are very rational at the best of times. At the worst of times, like this, it is impossible to be rational.
     
  20. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Location:
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    The sectioning of Bob, led to 5 months of being in a psychiatric hospital, as they decided that his weight loss was due to anorexia.
     
    Sarah94, TiredSam, Chezboo and 8 others like this.

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