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

Jonathan Edwards said:
It is not until one gets involved in a situation like this personally that one can see just how difficult it is.
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It is not until one has been severely or very severely ill with ME and personally experienced the dark side of the healthcare system that one can see just how horrifying it is.

Gaslighting, ignorance, knowledge resistance, violations of legal and human rights, bullying, prejudice, power abuse, threats, physical harm, emotional harm, discrimination, forced inappropriate/harmful treatment, medical neglect, the intentional withholding of medical care, hostility, the system protecting the abusers, false "revenge notes" added to your permanent medical record, lies and manipulation, disinformation, victim blaming, sexism, death, silencing by threats of sectioning, humiliation, insults, and the list goes on and on and on...
 
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mango said:
It's not until one has been severely or very severely ill with ME and personally experienced the dark side of the healthcare system that one can see just how horrifying it is.
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I am not sure that I would entirely agree with that. I have been aware all my professional life of how horrifying the system is - all those things that you mention. I learnt as medical student how disdainfully people are treated. My files as a student were marked down because of an incident when I tried to protect a patient from a terrible experience. But I am also aware of the situation from both sides and the complexity of trying to find a way out of an impossible situation.

I worry quite a lot that oversimplification of issues may contribute significant harm to PWME.
 
Jonathan Edwards said:
I am not sure that I would entirely agree with that. I have been aware all my professional life of how horrifying the system is - all those things that you mention. I learnt as medical student how disdainfully people are treated. My files as a student were marked down because of an incident when I tried to protect a patient from a terrible experience. But I am also aware of the situation from both sides and the complexity of trying to find a way out of an impossible situation.

I worry quite a lot that oversimplification of issues may contribute significant harm to PWME.
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Thank you for expanding on this, I really appreciate it. It helps me understand your comments better. I've sometimes wondered if maybe you are seeing the healthcare system and healthcare professionals in general through rose coloured glasses, because the kind of skillful, knowledgeable, thoughtful, curious, compassionate and fair colleagues/people/etc you write about often seem completely alien to me, as if they only exist in a very different universe than the one I live in...

If I may ask: if you are aware of all that, and still believe a doctor-patient relationship that has already established as hugely dysfunctional and power-imbalanced pattern can suddenly transform into something helpful and "healthy",... in your experience, what are the most common factors that initiate and drive such a change? Is there anything at all the patient or their family can do, or not do, in order to bring about a turnabout like that?
 
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mango said:
If I may ask: if you are aware of all that, and still believe that a doctor-patient relationship that has already established as hugely dysfunctional and power-imbalanced pattern can suddenly transform into something helpful and "healthy",... in your experience, what are the most common factors that initiate and drive such a change? Is there anything at all the patient or their family can do, or not do, in order to bring about a turnabout like that?
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I think the power imbalance in these situations may just be a function of how things have to be. It is the application that brings problems.

What in my experience can transform a situation? One is a change of personnel. A different health care professional may handle a problem much more usefully. In our case once we had found a psychiatrist who understood the best course of action everything got sorted out. But it was not entirely by chance. Having had a bad experience at one hospital I engineered an emergency admission at a different hospital and we met up with a different team.
 
I haven't been able to verify the info in the tweet Kalliope posted. Couldn't find any mention of it on the official Facebook page.

This is the latest verified comment I could find, Holger's father wrote on Facebook early this morning/middle of the night:
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A nurse from the hospital called at 11pm. Wanted a phone number for the staff at his residence.
His nutritional intake (nutrition) had not been set and the nurse wanted information about it.
We said it's important that nutrition gets started.
The nurse was nice and felt empathy with us.
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The nurse at the home promised when Holger went in that she would send along all the information needed :cry:. There are many shortcomings! Not even a phone number was included!

Translated with www.DeepL.com/Translator (free version)
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It seems to have worked at the higher instance, but it's still a big fail in my books if a very sick patient has to constantly go through this (reading back this thread he was threatened with sectioning from a different clinic six months ago). The failure were the psychiatrists at the health center who determined he needed to be sectioned without apparently even seeing the patient. This happens all the time in Finland with disability benefits. Usually the doctor who has contact with the patient understands the situation and agrees that the patient is not able to work, but an "insurance doctor" who has the final say categorically denies the request so that no ME/CFS patient here can receive disability pension, meaning they have to resort to other diagnoses like depression.
 
I don't doubt that psychiatry has been beneficial to some, I also don't doubt the need for sectioning on occasion.

As @Jonathan Edwards points out we cannot say for certain that psychiatry willnnever have a place in treatment or research for ME because we still do not not exactly what ME is and precisely how it affects all of us. Speaking as someone who does have a lot of cognitive difficulties.

However, at the moment, just as with every other speciality we have no proof that psychiatry can do anything for us. We do have 30 odd years of a very poor track record at their hands though.

Perhaps, it's just some prominent bad apples who are very keen to be seen as the go to speciality for ME and when they haven't helped have had a dog in the manger attitude to anyone else having a go. If anything they have suppressed progress and wasted the opportunity to gather even very basic data about their patients -even when they make claims of being an epidemiologist. If it's a case of some bad apples, why haven't other psychiatrists spoken out?

We have historical cases of patients being badly traumatised and permanently harmed by their treatment at the hands of psychiatry. We've even had deaths.

Of all the specialities it is one of the ones most open to abuse. Due to their diagnosis mental health patients are far less likely to have any complaints they made heard or taken seriously.

That isn't to say all psychiatrists are bad - I have been assessed by psychiatrists on a couple of occasions and I have to say they were definitely among the less unpleasant interactions I have had with the medical profession.
 
chrisb said:
The question is: did the system work, or did it fail?

Was there really no other way of achieving this outcome?
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It clearly failed. It will be written down as a success. Hence the circular failure that keeps on failing by doing harmful things while refusing to do useful ones. Because as long as the wrong things are being done, there is no need to acknowledge that they are wrong, otherwise clearly other things would be done instead.
 
Holger's brother posted an update on Facebook just now:
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After two doctors at Bra Liv Vaggeryd health centre ignored Holger's diagnosis and wrongly assessed him as having a "serious mental disorder", after having met him for five minutes. And sent him in for involuntary psychiatric treatment, Holger is now feeling very much worse.

Who will take responsibility for the iatrogenic harm?
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Holger's mother posted a comment on Facebook earlier today:
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Today, Saturday, Holger is so tired that I have to help him move his legs. He wasn't without ear muffs or sunglasses like he usually is. I also didn't get to wash his eyes or anything like I usually do.

They have done so terribly wrong and Holger is the one who pays the price
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(Edited because the Facebook post was edited.)
 
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Update on Facebook today:
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Our family is heartbroken. Unfortunately, we may not be able to save Holger's life. He will be without a home by September 1. As he gets all his nutrition through the vein, he will no longer be able to get nutrition even if we take him home. The alternative is LSS accommodation 2 hours away from the family and we have specialist advice that this is life threatening for Holger. We see no solution. I think we are finished.

Translated with www.DeepL.com/Translator (free version)
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:cry::broken_heart:
 
On the radio earlier today:

ME-sjuka Holger får stanna nära familjen – än så länge
https://sverigesradio.se/artikel/me-sjuka-holger-far-stanna-nara-familjen-an-sa-lange
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ME sufferer Holger gets to stay close to family - for now
1:30 min

Published today at 17.30

36-year-old Holger in Skillingaryd, who is seriously ill with the neurological disease ME, will be allowed to stay in his home municipality, at least temporarily.

The municipality of Vaggeryd has decided that Holger will be moved to a care home in Mölndal because it is difficult for the staff to cope with the situation.

This is not what Holger and his family want: "We fear for his life if he is moved," says Holger's brother Anton.
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How does anyone involved in this "decide" where someone lives? I'm not understanding the process here. Are they forbidding him to stay home? Or I saw local authorities were refusing him his food and he just can't stay there, which is basically the same thing?
 
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