News from Scandinavia

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.

 

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.

 

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.

 

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.

 

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?

 

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.

 

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.

 

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.

 

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.

 

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

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.

 

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

 

Questionnaire in Swedish, for people with ME. The blogger/advocate Den Ofrivilliga Eremiten wants to know your thoughts and experiences regarding reporting (or not reporting) iatrogenic harm, healthcare related discrimination etc.

https://mitteremitage.wordpress.com/frageformular-att-anmala-vard-och-omsorg/

She's doing a fantastic job, I'm so grateful, and she has my support.

 

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.

 

Can you link to the article?

 

https://www.me-foreningen.info/2020/05/30/militante-me-pasienter-me-aktivister/

https://translate.google.com/transl...tante-me-pasienter-me-aktivister/&prev=search

 

Just an odd thing that struck me when reading the Dagbladet article (discussed here) about Lightning Process and patient activism.

Per Fink was one of the doctors who was interviewed for the article on ME activism. He says he's had complaints about him sent everywhere, even to the European Convention on Human Rights.

He also talks about staying at a hotel in New York under false name when he gave a lecture at Columbia University. That there were demonstrants present at the lecture. About a petition against his participation at the conference that had over 10 000 signatures. And about demonstrations outside his clinic in Denmark.

And here's the thing I'm curious about; he also tells the story of his email being hacked once. An email from his account went to several receivers at his contact list saying: "You're fired, whore". He never found out who did this.

I wonder if some Danish members might know more about this? Why did he mention this in the interview? If he doesn't know how did it, how was that a relevant story in this context?