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News from Scandinavia

Discussion in 'Regional News' started by Kalliope, Nov 2, 2017.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
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    The Norwegian commercial broadcasting TV2 has an article today about Pål.

    A morning show to the channel recently declared him as an "Everyday Hero". Since his wife Gunn became ill with ME 15 years ago after several infections. She deteriorated after following advice from doctors to exercise.
    Pål has been her carer for all these years and also does volunteer work. His sister-in-law says about Pål: - He cares and makes a difference in the world. He's my biggest role model, and proves that real love conquers everything!

    TV2: Pål har pleiet sin alvorlig ME-syke kone i 15 år
    google translation: Pål has cared for his severely ill wife for 15 years

    Edited for spelling mistakes
     
  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I can see where you're coming from & agree.

    However, with poor diagnosis using outdated criteria there are people diagnosed with ME who are not exercise/exertion intolerant. The risk of misdiagnosis is quite high. I think it was found to be 40%+ of UK patients referred to specialist services.

    I think ignoring those patients the risk is you add fuel to the illness denial claims. These people do exist and have a CFS diagnosis.

    I think the argument to have faith in the patient and believe they are credible witnesses to their own experience is a good one. Why believe one patient's experience over anothers. Just because their reports may differ doesn't mean either is lying or deluded and doing so reflects the health care professionals bias in what suits.
     
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  3. strategist

    strategist Senior Member (Voting Rights)

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    I agree there is a problem of misdiagnosis and diagnostic uncertainty but that doesn't mean the other patients necessarily have a stress and anxiety related illness. I'm also not convinced that rigid application of narrow diagnostic criteria is good. It's unclear if doing this is beneficial and I can see how it could hurt some patients. There are already services for people with stress and anxiety related illness. I think ME/CFS services should offer something different.

    Patients are often wrong about the cause of their illness. I've read the comments of people with other serious "organic" disease and some of them are convinced that stress caused their illness. Presumably they felt stressed before the onset of their illness and so concluded that stress must have been the cause. Other patients will say their illness is stress related because reducing stress helps them feel better, but I think that doesn't tell us about the actual cause of the illness. Patients know their symptoms best but can also hold all sorts of unreliable beliefs about their illness. Causality is hard to figure out.

    PS: in my opinion the results of clinical trials like PACE and SMILE do not seem to support the idea that there is a substantial portion of patients for whom these therapies work.
     
    Last edited: May 25, 2020
    Hutan, andypants, Snowdrop and 6 others like this.
  4. strategist

    strategist Senior Member (Voting Rights)

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    To clarify, PACE (according to the original protocol) does show results that are a little worse than those found to be produced by sham therapy in a previous review by none other than Wessely.

    Some CBT proponents might also say that it's OK that CBT is just a placebo because for this particular problem a placebo can be considered an effective treatment. This claim introduces the difficult problem of trying to figure out how much of the effect of CBT is a placebo and how much of it is a specific effect on the illness in the context of an illness without good objective markers of severity. The effect produced by CBT however does not seem to be larger than that of placebos in conditions where placebos are considered to have no effect on the illness. It actually seems to be a small placebo effect. The Rituximab trials showed a much stronger placebo effect but strangely we don't see CBT/GET researchers wanting sham infusions of immunotherapy for patients because it's a better placebo.

    It's useful to have clarity of what a nonspecific treatment effect is. A nice dinner, a massage, a purring cat, a nice conversation, an inspiring talk or the promise of symptom relief and so on will make people feel better but they are not something that can be considered to have an effect on illness. Some people might need a therapist. That's fine, they are generally available. It doesn't make sense to describe CBT/GET as treatment for ME/CFS when it doesn't seem to have any specific effect on the illness and just produces some nonspecific effects. I think there is an issue of informed consent here because patients are being told there is treatment for ME/CFS when there is not. There are other ways to make patients feel better than filling their head with unreliable and false ideas about the cause of their illness.
     
    Last edited: May 25, 2020
    Michelle, Hutan, Snowdrop and 8 others like this.
  5. strategist

    strategist Senior Member (Voting Rights)

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    I have interacted with BPS people before and they immediately began to interpret symptoms as having a psychosocial cause without actually knowing anything about my psychosocial situation. To them the lack of medical explanation is in practice evidence that they cause must be psychosocial. The impression given is also that to the BPS people, persuading a disbelieving patient is routine, presumably because a lot of patients find that these ideas don't make much sense. That they are used to not being believed and see it as part of their job to treat the unwilling and persuade the disbeliever might explain why they do not listen to criticism.

    Where I'm getting with this is that I think many patients with psychiatric diagnoses do not actually have a psychiatric illness. They just got caught by the BPS zealots who labelled them as such. Medicine tolerates this because it's so convenient: it's a cheap and easy fix for problems that are too hard or costly to deal with. Somewhere along the way they actually started believing in it too it seems.
     
    Last edited: May 26, 2020
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  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I agree with everything you've said @strategist. I think the point made by Grete Lilledalen addresses a different issue though.

    1) stop the antagonistic view of patients learning about it from each other. The patient's experience is credible and valid. You don't have any evidence that says otherwise, so listen to them.

    2) don't cherry pick who you believe based on whether their experience confirms your preferred treatment/bias. Just because the treatment your advocating has failed to help them, this does not reduce the patient's credibility.

    She is very much tackling the healthcare professionals attitude towards patients here rather than addressing it from the arguments about validity of treatment and misdiagnosis. As we know these are other festering cans of worms.
     
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  7. strategist

    strategist Senior Member (Voting Rights)

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    The patients with a broadly defined CFS diagnosis who are less affected are sometimes considered by other patients to be the target population of therapies like CBT and LP. The thinking is that these therapies were created for them, not for people like me.

    I suspect that patients who are less ill will find it easier to delude themselves that they are able to control the illness with some mind-body technique. As you get sicker this begins to look less credible and merely not paying attention to symptoms doesn't work well because they cause too much impairment and are too intense. You simply can't make yourself believe that things are getting better. That may be why those who are less ill seem to respond more to placebo therapies.

    When an illness becomes more severe it also shows itself more clearly, which could also explain why those who are less ill are more receptive to believe in mind-body explanations.
     
    Last edited: May 26, 2020
  8. Trish

    Trish Moderator Staff Member

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    35,712
    Location:
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    My thinking is more that those with the symptom chronic fatigue, or CFS defined under the Oxford or Fukuda definition and who don't have PEM may be more likely to think these therapies are helpful by persuading them they have some control.

    For those who get PEM, however mild the ME, you always come up against the road block of PEM once your activity exceeds your threshold and you crash back down again. You might be able to persuade yourself that this is frequent infections if it's accompanied by sore throat and swollen lymph glands, or frequent migraines if it's accompanied by bad headache, or frequent stomach upsets etc etc. and therefore not relate it to the underlying ME and PEM. So you might as a result of the therapy think your ME is much better, but you are more prone to other things, and therefore say you are recovered.
     
  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I agree with both these statements and don't see them as mutually exclusive.

    As ill people we are reliable experts of our illness experience. Then when confronted with no clear and certain cause of our distress give in to either believing the prevailing dogma or finding / creating our own cause through correlation of life events that create a compelling story that helps us make sense of our suffering.

    In other words, when there is no good data to follow we give in to flawed interpretations of our experience. Again, the point being to make sense of our suffering. Which seems to be a fairly powerful urge. And the BPS exploit it fully.

    It also seems to me that it's possible that 'stress' of the ordinary variety that happens throughout our lives but goes by as unremarkable because we handle it and move on --becomes a larger issue because we are in fact ill before we are aware of being ill and therefore not coping at a level of a healthy person.

    So the idea that 'stress' is causative becomes magnified. Even though it is a cart before the horse explanation. I see this as a much more likely interpretation of what is happening. After all -- it's very likely that the same people managed stressful situations in the past just fine.
     
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  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Yes. I believe both these statements can be true simultaneously.

    In the distant past, when working, I would be asked to visit clients sites where there was some fault or problem that couldn't be resolved locally for some reason. My job was entirely technical but I needed input from.the people who normally looked after those systems to tell me what they witnessed.

    When a complex system.goes wrong, the fault can appear way downstream in the process. So although the person is accurately describing what they have seen, the fault isn't necessarily where or what they think it is.

    The client needed someone like me with the experience and training to put together what's happening based on reports and my own investigations. I needed the client's input to identify & fix the fault - they know their systems better than me, how their processes usually operate & nearly every system and site have their own quirks.

    I have seen & cleaned up after arrogant colleagues who charge onto a site all guff and bluster. Failure to listen and work with the locals will often cause them to ignore vital pieces of information, think they've fixed a fault, only to introduce another. They end up looking very, very silly.

    This is where many doctors and healthcare professionals go wrong. They have training, experience & expertise but they don't possess the local knowledge & expertise the patient has. Both parties need to be able to work together with mutual respect. As the trained professional in the relationship the doctor should be capable of fostering & developing that relationship.

    If someone who works with machines can understand and do that why can't doctors?
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    I would be surprised if the real numbers of cases that can be explained this way, where the driving mechanism of physical symptoms is psychological, is above 1% of the numbers that are currently labeled as such. Everything else will have clear physiological explanations. Meaning a 99%+ error rate. Genuinely surprised. The field needs a complete reset, this much failure is unacceptable.

    It will take a while to catch up to this, to understand the real underlying causes and mechanisms, but it's clear that the standards in psychiatry, and especially in clinical psychology, are nonexistent and unable to produce reliable evidence. The rest is entirely down to turtles all the way down default explanations.

    Not because the field is useless, it's entirely a failure of execution. The field is simply immature and needs to stop pretending that made-up explanations are good enough. In science they never are. It's fine to use such temporary knowledge but it should never have been given this much force, especially the tyrannical regime that has effectively erased us as people. Questionnaires cannot produce reliable enough evidence to decide on the fate of millions of lives. Not in any context. Not in anyone's hands.
     
  12. strategist

    strategist Senior Member (Voting Rights)

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    I heard yesterday from a family member that works in the healthcare sector about a case where a man developed symptoms that were initially interpreted as likely to be multiple sclerosis. It turned out to be a reaction to chemicals in the beauty salon he worked. How many people have such a problem but are labelled as having a conversion disorder when the usual investigation does not reveal a structural abnormality?

    Do women have more "medically unexplained symptoms" because they're also more in contact with beauty products? I know there are safety tests but they're mostly in animals and we know that for example mouse studies are of little use to understand disease and develop treatments for humans.
     
    Last edited: May 27, 2020
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  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Years ago I saw a documentary by a guy who worked as a documentary maker or producer about his experience with the healthcare system.

    He was having weird symptoms, ended up referred to psychiatry and staying as an inpatient at a psych unit. Each time he saw a different member of the "team" they gave him a slightly different label. The head honcho 's opinion over ruled all others, "schizophrenia" won the day and the heavy duty drugs began, soon followed by the exhausting need to constantly fidget & other delights.

    When the patient protested the head honcho told him.the medication was essential and, better yet, working as he was no longer hearing voices. The patient protested he never had heard voices & was told his memory was at fault, it was clearly in his notes & the notes were never wrong. He simply didn't understand how ill he had been beforehand.

    Soon the guy discovered he was having difficulty urinating & spoke to the staff about it. They ignored him. A friend who was visiting sneaked in some weed. After a very sneaky smoke in the loos, the patient discovered it eased the problems with urination.

    Eventually, he gets out, goes to see a neuro and is finally diagnosed with MS. All his symptoms, all along indicated MS according to the neuro who also told him he had seen this happen several times before. It was very unlikely he had schizophrenia or any other such disorder.

    as a nice bonus, no one could, or would, remove the diagnosis of schizophrenia from his records. So, every mortgage or loan application, every job interview it came up.

    I really wish I could remember the guys name. This documentary was aired about 10 years ago, possibly more. I have a feeling it was on Channel 4. As you can tell the injustice of it really struck me.

    He also had a wife, not sure about kids, so he would have had to cope with all this too.

    How can you ever prove you are not mentally ill? Especially if denial of the illness is seen as a feature of the illness. Add in arrogance and a total lack of care or taking of responsibility for the effect you're having on another person's life. It seems less about science and medicine and more about zealotry & control.
     
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  14. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I went looking for the documentary @Invisible Woman referred to above.

    I didn't find it but found this article from 2017 in Multiple Sclerosis news today:

    https://multiplesclerosisnewstoday....s-and-a-type-of-schizophrenia-may-be-related/

    I can't speak to how robust their conclusions are but even if MS and Szp are found together at times there is still a whole lot to critique with regards to how the person was treated, whether psychiatry needs a big reboot in terms of it's understanding of how to view mental manifestations of biological processes etc.

    Reading about psychiatrists and the application of their craft often feels a lot like reading about Shamans of some isolated tribe stuck in the past without science.
     
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  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    No, I've searched for it before & tried to find the guy's name. I wish I'd made a note of it. :rolleyes::oops:

    It was the first time i realized the full financial implications of such a misdiagnosis.

    Once treated for MS all his symptoms, including the alleged psych ones, improved. He had been open about discussing what was happening to him with his wife and he never mentioned voices to her although the psychiatrist insisted he was hearing voices when he was admitted. He was completely unaware of any missing time or memory gaps.

    Other doctors told him they sincerely doubted the schizophrenia diagnosis but when it came to his medical records he got "the shrug".

    The diagnosis would have cost him a lot over the years from increased insurance premiums through to more expensive credit & may even have damaged future job prospects.

    One thing the documentary didn't mention is how this diagnosis would also affect his children. I don't know if it is still the case but when I was still working job applicants were routinely asked about the mental health of first degree family members. It's quite possible mortgage applicants would have been asked this too.
     
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  16. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Yes, I see. Thanks for that response. This is the stuff of nightmares.
     
  17. mango

    mango Senior Member (Voting Rights)

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  18. Aslaug

    Aslaug Moderator Staff Member

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    Dagbladet today is just sickening :confused::banghead:
     
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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    Tabloids gonna tabloid. That no one else would run that ridiculous airing of grievances says a lot by itself. And the weird PACE post-hoc analysis that was basically self-published. They are a small fringe that managed to get attention but have run out of corners to paint themselves into.

    These people have the good folks at NaturalNews, Spiked and various tabloids behind them. We got actual science while they need political interference just to get a few papers trough publication. It's silly for a while but they are so completely out of their depth and flailing aimlessly. Let them fill and fling their diapers, doesn't affect the good science happening despite their best efforts at stopping it.
     
    Sean, andypants, Caesar and 1 other person like this.
  20. Aslaug

    Aslaug Moderator Staff Member

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    I live in hope :) Unfortunately I'm in another field with a lot of bad science, namely nutrition, and I have a lot of experience with people who read Dagbladet/similar tabloids and believe their reporting is sound. Even more unfortunately this also occurs with lecturers, even in a lecture about how to recognize false claims in science.. It's mind-boggling.
     
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