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

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...

 

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.

 

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?

 

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 don't know if this is verified from other sources, but hope this is the truth:

https://twitter.com/user/status/1413423602150608900

 

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:

 

Holger's brother posted on Facebook a few minutes ago:

 

That is good news indeed. But I can only imagine the amounts of stress, fear and despair this family have had to go through. And who knows for how long Holger will be paying a price.

 

Ditto. And how will the two doctors who tried to section him react to this news? Will they accept this, or double their efforts..?

 

The question is: did the system work, or did it fail?

Was there really no other way of achieving this outcome?

 

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.

 

I have lost track of what has been posted, but his family have confirmed on Facebook that Holger has now been returned to his normal accommodation.

 

Yes, here's the link. Holger's brother writes on Facebook:

 

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:

Holger's mother posted a comment on Facebook earlier today:

(Edited because the Facebook post was edited.)

 

Update on Facebook today:

 

Holger's brother on Facebook yesterday:

ETA: In the comments he says "it only means that they are not allowed to move him before the case is decided in court. Danger is not over".

 

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

 

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?