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

mango

mango

Senior Member (Voting Rights)
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https://www.s4me.info/threads/news-from-scandinavia.647/



"Help Holger now!" 13 minutes long video in Swedish about Holger who is very severely ill with ME. Made by his younger brother.



(I haven't been able to watch the whole video yet, but the first few minutes are really really good!)

More info here, Holger's family is fighting for better home care and medical care, petitioning politicians etc.



A little bit more info here too, on (internationally famous/beloved crime fiction author, pwME) Karin Alvtegen's birthday fundraiser for OMF:



ETA: #HjälpHolgerNu #Justice4Holger
 
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mango said:
"Help Holger now!" 13 minutes long video in Swedish about Holger who is very severely ill with ME. Made by his younger brother.
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Even with my not exactly brilliant ability to follow spoken Swedish, this is a powerful and very moving video.

Part of it describes very severe ME - this deserves to be subtitled for a wider audience.

The other part is about the failure - refusal may be a better word - of the Swedish health and welfare systems to provide adequate help.
 
Ravn said:
this is a powerful and very moving video.

Part of it describes very severe ME - this deserves to be subtitled for a wider audience.

The other part is about the failure - refusal may be a better word - of the Swedish health and welfare systems to provide adequate help.
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Subtitles in English have been added! Please watch and share.



 
I've heard this kind of story many times now. It goes roughly like this: young person in school gets mono/flu-like illness, begins to struggle, is diagnosed with depression and treatment seems to make things worse, they keep getting worse and eventually are diagnosed with ME/CFS. They never get any real help. The final outcome varies, sometimes they eventually get better, some stabilize, others decline further and become very severly ill like Holger.
 
mango said:
Subtitles in English have been added! Please watch and share.



Click to expand...

A devastating story, and an all too familiar one :cry:

The local newspaper Skillingaryd has an article about Holger's family's plea for help. A demonstration was held today with 45 relatives, friends and other supporters of the family.

- We need urgent help for Holger to continue to live. We need help now. The public service people blame the politicians and vice versa. Someone with another placard shouts "There are more people who are sick in ME who need help, our daughter".


Skillingaryd: "Ingen lyssnar på oss"
google translation: "Nobody listens to us"
 
Kalliope said:
A devastating story, and an all too familiar one :cry:

The local newspaper Skillingaryd has an article about Holger's family's plea for help. A demonstration was held today with 45 relatives, friends and other supporters of the family.

- We need urgent help for Holger to continue to live. We need help now. The public service people blame the politicians and vice versa. Someone with another placard shouts "There are more people who are sick in ME who need help, our daughter".


Skillingaryd: "Ingen lyssnar på oss"
google translation: "Nobody listens to us"
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Monstrous. Just plain monstrous disregard for human life.

Once we pass a tipping point that ends the state of discrimination, it will not be accepted to say they didn't know. They did, and they chose this, as responsible professionals with all the information available to them to make wise decisions and choosing to disregard it entirely. At every step the worst possible decisions are made, still to this day. Those responsible to fix this are the biggest obstacle.

All to feed the psychosomatic death machine, its belly filled with tens of millions and it just wants millions more, an endless loop of suffering. One of the most brutal ideology ever invented and it is popular and jolly and good fun for those who work the machine and those who approve of it.

Just make this nightmare stop.
 
Another sympathetic news article about Holger:

Jönköpings-Posten: "Demonstranter tar strid för ME-sjuke Holger: 'Vi är utmattade, förnedrade och gråter hela tiden'"

https://www.jp.se/artikel/demonstranter-i-skillingaryd-och-vaggeryd-hjalp-holger-nu

Google Translate, English "Protesters fight for ME-ill Holger: "We are exhausted, humiliated and crying all the time""

The problem with the disease is that it is not visible. Thus, large parts of science do not really accept it. Since it also seems to affect different parts of the body, it is also difficult to decide how to treat it.

- We do not get any help from the Swedish Social Insurance Agency. And from the municipality we do not get enough hours of home service. The care services we have received are dangerous and directly harmful, which means that we had to say no, says Anton Karlsson
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Facts: Holger Klintenberg

When Holger went to high school he got glandular fever, which triggered ME/CFS. It stands for myalgic encephalomyelitis, also called chronic fatigue syndrome or ME.

Little brother Anton Karlsson compares Holger's condition with a battery without energy. This means, according to Anton, that Holger is unable to handle sensory input, such as sound, from the outside, but instead experiences pain - which in the long run makes him worse.

The disease means he needs help with going to the bathroom and eating - the same food every day. He can't read or watch TV and can't meet family or friends. Holger has not showered in two years, never wears clothes and has not talked in the past year.
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ETA:
 
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rvallee said:
Just make this nightmare stop.
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Yep, says it all. As the video about Holgar highlights it's not just us patients caught up but our loved ones too.

Holgar's brother did a great job describing the problems he faces but they are trapped in the nightmare alongside him. They have no choice but to struggle on unaided and the burden of care for someone that ill is very heavy & expensive. Yet, if they don't carry on they would have to abandon him to treatment which would be tantamount to torture.

This from one of the world's supposedly happiest countries and one of the wealthiest. Not that any of the others are much better.
 
Anton, Holger's brother, wrote an update on Reddit.

Code: 
https://old.reddit.com/r/cfs/comments/gzv16b/help_holger_now_a_plea_from_the_brother_of_a/g0rmmr8/

Hi! This is Anton, talking in the video. Just wanted to give an update of what have happened so far. In Sweden the video have been seen by about 70000 people and there have been several newspapers writing about it. But mostly small newspapers. Tomorrow it will be on Swedish television, on the local news.

Politicians have have put some pressure on the situation and our situation is now a little bit better. Still there is plenty of work left to do and the crisis is still on. There's a Facebook page called Hjälp Holger Nu where we update about the situation and do what we can to spread knowledge about ME. Unfortunately it's all in Swedish, but as soon the worst crisis is over we hope that we can share material in the English language. I know that the first video is very long but I made it in a crisis, so I am happy that so many have seen it anyway. I am very open to suggestions of how to make this terrible disease known. Thanks everyone! And thanks for sharing the video.

/ Anton, Sweden
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They are now threatening to section Holger, if he doesn't go volontarily :cry: Apparently the psychiatrists at Ryhov hospital believe they can cure Holger with a few weeks of inpatient psychiatric treatment :mad::cry:

Holger's family is being totally ignored and steamrollered by the psychiatrists, and are now (still, again...) desperately looking for help. They are in particular looking for medical professionals like physicians etc, who have a genuine understanding of very severe ME, who would be willing to try and educate/talk to the ignorant psychiatrists about very severe ME.

Can anybody help? @Jonathan Edwards, do you maybe have any contacts that could be of help? @PhysiosforME?

More info on Help Holger Now Facebook page:
Google Translate said:
(Posted 9 December) Now Holger risks forced admission to the psych ward if he does not enter voluntarily. They want to put him in for a long time to help him regain his abilities. Nobody listens to us. Nobody takes us seriously. We are completely desperate. They make decisions without any knowledge of ME. We will not be with him either. They run over us and Holger completely.
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Google Translate said:
(Posted 9 December) All psychiatrists who met Holger last week and even earlier have stated that his problems are not due to mental illness. It's in his medical notes. Why they keep sending him there again and again is incomprehensible!
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Google Translate said:
(Posted 8 December) Feel free to help spread this by sharing the post and/or notifying the media
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Google Translate said:
(Posted 7 December) It has been quiet here for a while, but unfortunately it is not because everything is fine. We relatives are completely exhausted and the hospital visits in September have left deep scars.

Since September, Holger gets all his nutrition via a venous port. This worries his doctor, who sought help in vain from doctors in the Region who specialize in nutrition. All referrals have been denied and the doctor still had to send him to the hospital for help. We relatives were very hesitant about this after previous experiences. But the doctor stood his ground and on Tuesday last week decided to send him to the psychiatric clinic in Ryhov. We relatives protested and wanted to postpone it to get a more planned admission and make sure that he could get the help he needed. We also wanted to ensure that there was a suitable room and that we relatives could be there. But the doctor gave Holger the choice between going to the hospital or staying at the accommodation and die!!!

Holger was sent in and had to wait in the psychiatric emergency room for 6 hours!!! When it was finally time for admission, they stopped us relatives from following due to a no visitation rule. He was admitted to a psychiatric ward and we were not even allowed to join the rounds. We really did everything we could to circumvent the restrictions like last time. The stay at the hospital became a nightmare for Holger and we could not be there to protect him. He did not receive the help he needed and the information about ME sent with him was ignored. He texted in the evening: "Get me out of here, my illness can not handle this". The doctors told him he was too ill, they could not help him. There was no talk of involving any nutrition specialists. After two days he was sent home again without anything being done and again we had to fight for ambulance transport. Now it is Holger who has to pay for this with extreme pain and PEM! How to treat a human being in this way! Does Swedish healthcare not work better than this?
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Here's a news article published in their local paper today (paywalled), about the hospital visit last week:
Google Translate said:
Relatives of Holger upset after examination at Ryhov: "Nightmare stay"

Holger with ME was rushed to the medicine clinic in Ryhov and according to the family it was a real nightmare stay - mother Ingegärd: They completely ignored him and talked about him as 'that Holger'"
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https://www.jp.se/logga-in/anhoriga...-efter-undersokning-pa-ryhov-mardromsvistelse
 
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From the paywalled news article mentioned above:
Google Translate said:
According to Ingegärd, Holger usually uses his mobile phone extremely sparingly during the year. But during the time at Ryhov, he made five calls and sent seven text messages. The messages said, among other things: "take me out of here, my illness can not handle this", "have not been given anything to drink" (for 17 hours) and "the door is open".
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:cry::cry::cry:
 
It makes my blood run cold..... I can only imagine how horrific and stressful this is for both Holgar and his family.

If he has been assessed by a psychiatrist recently would one they be prepared to get involved on his behalf? Speak directly to who ever it is that thinks sectioning is more appropriate than nutrition?
 
This sounds so awful :cry:

I'm pretty sure the Swedish dietician education is similar to the Norwegian one, which means no information about ME (CFS is mentioned in one of the main used books in clinical nutrition, but that's about half a page.. I can't remember if severe patients were even mentioned and they wrote about 1-2 days of "post exertional fatigue", not PEM. It was updated this year but haven't seen if any changes were done to this chapter).

Not sure if it can help, but would it be possible to contact Dietisternas Riksforbund? They might know a dietician with knowledge of ME, or at least advice to get access to a dietician? Even a dietician without specialist knowledge should be able to help when the patient needs nutritional support, is bedridden etc! Parenteral nutrition over time is problematic on many levels, it makes me furious he doesn't get the help he needs.
 
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