Appalling conditions for very severely ill ME sufferer in Norway

mango

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Ysabelle-S

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How awful. :( I hope something can be done to help her. I've tweeted the link so hopefully more people will become aware of her plight. I often think about Karina Hansen, and there are so many others we don't know about.
 

Kalliope

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How awful. :( I hope something can be done to help her. I've tweeted the link so hopefully more people will become aware of her plight. I often think about Karina Hansen, and there are so many others we don't know about.
Good! She has asked for help, and sharing her story on social media is one way of helping, also for the international patient community.
 

Kalliope

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I think it would be useful to mention this on #MEAwarenessHour. Karina often gets a mention there. Though I often forget when #MEAwarenessHour is on, cos you know... bad memory from ME, lol.
Great idea. It is tomorrow..

Anyone able to make a write-up in English by tomorrow evening? Next Wednesday will also do if it is too soon. The blogpost @mango linked to is a good summary of the situation, so the google-translation could be a good start.
 

Ysabelle-S

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Great idea. It is tomorrow..

Anyone able to make a write-up in English by tomorrow evening? Next Wednesday will also do if it is too soon. The blogpost @mango linked to is a good summary of the situation, so the google-translation could be a good start.
The photos are quite shocking. Her legs look very similar to my gran's when the latter had years of leg ulcers - this was in her seventies/eighties, etc. The gnarled hands - I've heard of hand problems with at least one other severe ME sufferer. Not sure how common it is. I think in the other case, the patient's hands had gone into spasm, and the fingers were permanently deformed because there had been no medical intervention. It was so long ago, I can't remember the details though. I could be misremembering.
 

AndyPR

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Hey @Kalliope and @mango here is a quick attempt to make the story clearer in English, hope it's of some use.

Please note that, not speaking Norwegian, I've had to guess in some areas and change/delete a number of words but I've tried to keep that to a minimum. I've also kept some phrasing that is obviously not 100% English accurate, as I thought that would make it more authentic when showing other patients - if you want to share with official press/media then it probably needs editing again to clean it up some more.

Appalling conditions for a very seriously ill ME patient. Who will help Birgitte?
6

By serendipitycat on 19. September 2016 ME

Imagine that you are so sick that you can not stay at home any longer, but must stay in nursing homes. Imagine that you are so ill that you can not turn yourself in bed, or wash yourself. Imagine that you are totally at the mercy of strangers hands and their ability to give (or not give) care. Imagine that justice does not work, and you have, for years, been treated so badly that you have constantly deteriorated.



Such is the plight of ME sufferer Birgitte Landmark. Lately, a group of fellow patients have started a fundraising campaign on bidra.no to try to get enough money so that a lawyer can take Birgittes case. It is one of the ugliest I've heard about. Can you (yes, YOU) contribute, even a small amount, to help fund legal aid for a lady who is terrible treated (both mental and physical) in the nursing home where she lives?

-> Read more about the fundraiser here! <-

From an active life to a life of darkness
Before she became ill Birgitte had an active and eventful life.

She was a happy and joyful woman, fond of animals and a nature lover, who appreciated the arts, theater, cinema and exhibitions.

She is a graduate economist and holds a Masters degree in business. She has held several management positions, has been a food and tourism boss, head of a rehabilitation center and an administrator for a travel agency. She speaks three languages and has friends spread across all continents. Resourceful, hedonist, caring, benevolent. A person who glows with life and energy, a woman that creates life around her, a woman full of laughter and joy.

She and her partner commuted much between Lyngdal and Oslo because of the job, but she loved it. Birgitte lived a rich life, such as you. Then she became ill.

Birgitte has been bedridden for 12 years in darkness. She is 100% in need of care, with the most serious degree of ME. She can not move, and has not been out of the room since she arrived there in 2004.



Here is Birgitte - for 12 years she has been in the same bed.

A long and hard struggle for necessary and proper care
The fight for better care has been long. Already in 2006, the case was in the media, and in a posting on the VG Birgitte says this:

- I have so much pain in the body that no one can touch it, says Birgitte VG.
She is laid in her bed 24 hours a day in a room in absolute darkness.
All curtains are drawn. Caregivers going into her room can only whisper. On the door there is a sign that no one must consult with the sick woman.
Birgitte despairs over the treatment she receives. Helpless invalid on Lyngdal Heimen she experiences that her health steadily worsened, because she has not received qualified help. ( Retrieved from ME-forum )
Then Birgitte had not been washed in two and a half years.

Her case was appealed to the Board of Health and the Ombudsman.

Yet it continues with caregivers who fail to follow procedures Birgittes fragile health condition can withstand. When nurses do not follow those routines Birgitte's condition worsens.

In March 2009 the case was again in the media.

For several years she has fought for better and personalized care at the nursing home in Lyngdal. Landmark believes she is being cared for by many different people - and many do not have the knowledge needed. - I have said the same for five years - so I think now it is more related to the ability and willingness and attitude - than it goes on resources, says 50-year-old. A few nurses who know the situation and my condition - is what I need, says Landmark. ( NRK Sørlandet 03.03.09 )
The municipality believes that the care provided is justifiable. But despite Birgitte requesting fewer nurses, she gets more. The municipality will again appeal to the Board of Health.

Landmark struggle with chronic fatigue syndrome in the fifth year. And the former commercial and tourism boss in Farsund is now even more exhausted than when NRK reported about her three weeks ago. When she asked for a team with few and experienced nurses, the municipality responded on Monday by transferring care responsibilities to 15 brand new people from the home. ( NRK Sørlandet 26.03.09 )
Meanwhile the ME Association helps Birgitte with matters and Lyngdal mountains are reported to the police for lack of care.

Professor Saugstad is one of those who have visited Birgitte's care home. He is critical of how the very severely ill ME patients are treated in health care.

- I've seen many of these severely ill ME patients, and I would say - in general - that very many of them are not just all bad care of health care, but are also bullied by health care.
Relationship to Lyngdal Municipality and Lyngdal Heimen described as an "ice front".

It just gets worse and worse.

The situation is unbearable


Birgittes hands are gnarled and stiffened - broken after she received several trapped nerves when she has been washed.

Birgittes situation is intolerable. When she tries to communicate her needs to the nurses and management at the nursing home, they react to deprive her help because they do not like the way she communicates.

From a blog post written by a fellow patient :

Countless times she asked for better training for nurses, that treatment guidelines should be followed, more predictability with a permanent team of caregivers who know her and her situation. Nevertheless, no positive change occurred through all these years. Several times she has felt obliged to report nursing home for improper, unworthy, inadequate care. Equally many times she has been rebuffed. The system protects its own, not a vulnerable woman who barely has the strength to fight for their own lives. Yet she struggles as best she can. She wants to live, not only maintained for the rest of your life.


Birgitte have skin problems in the legs that are not being investigated. The 13. November 2015 Printer doctor Kreyberg posted this on the "Do not forget ME":

"This picture is from a nursing home patient who is in her 12th year without much opportunity to move, totally dependent on nursing care and help with most things. Shall be treated as a case of real ME states, which requires management but caregivers more or less do as they please with respect to the adopted procedures. The patient was originally transferred from a psychiatric ward, inlaid with "diffuse e plagues" which was interpreted psychosomatic. A fateful start of patient career. Stiff joints and great difficulty using their hands do not impress. The nursing home has naturally a medical supervisor, but they will not ask him to stop. Skin lesions are met with a shrug, nobody cares about finding out what it is or what it may come off, or there may be an underlying cause that can be treated. Attempts to drain the blood was refused by the nursing / local doctor's office since she had GP from another municipality. Now also substitute doctor stopped, and the patient has at present no doctor. How is this possible? "


Dead skin should be removed, which led to burns that were only covered with toilet paper.

Must lie in his own feces - do not wash their hands
It has now been several years since the matter was up in the media, but Birgitte's struggle to get nursing adapted her serious disease goes on and on.

15. September 2016, writes Birgitte on Facebook about the nurses who came to turn her in bed. She wears diapers, and sometimes carers will not change her at night, just because it suits them better to replace them in the morning. Can you imagine what it's like to have to lie in your own feces through the night? Neither babies or adults should be treated this way! But to wash her hands they refused to do, she writes. Now she must eat with hands contaminated with urine and intestinal bacteria.

It is actually harmful and chilling treatment. She does not require much. This is very basic needs, and just one of many examples of things she experiences.

Her mother died a few days ago and the staff have no respect for her grief. They come into her room all of a sudden, and talking loudly. Birgitte has VERY severe ME. It is the most severe degree. Often small sounds like faint whisper of air conditioning can feel insurmountable. Just imagine how it is when there are two people in the room, talking loudly and refusing to stop? Birgitte requesting that they talk later, she must rest, but they will not stop talking.

Desperate, she puts plugs in their ears and try to notify the head of the nursing home via text. The reaction she gets is that if she does not accept the care on offer she can move, but Birgitte has nowhere else to go! She is too sick to move, she is at the mercy that nurses are able to familiarize themselves with her situation and give her better care!

Punished for complaining about inadequate care
Birgitte sent in her despair a text to the management of the nursing home and asked them to pay attention. This is the reaction she got, told in their own words.

They are now threatening to shut the doors and just put food into the room. Dinner, I can not even. Hardly sliced once per day. There are starving. GP told it in etterm iddag. I said he must be prepared for a lot. Unfortunately. I had a long talk that he began to understand gradually. Lies and manipulation abound from the team. I got scolded for publishing on Facebook. I said it in desperation. There is no choice more Now E. given team total speech ban. I asked what I got to eat. Do not answer. I asked if there was much left. Do not answer. The temperature in the room. Do not answer. About medicine. do not answer. Total communication bans. Scary.
It is neither compassionate or equivalent to treat a very serious ME-ill patient in this way. Several times have friends and acquaintances of Birgitte have scrambled to the nursing home to help her. It can not continue like this.

So that Birgitte be able to get stabilized her situation and hopefully experience improvement, she must have a firm and adapted program around it. She has not this today. The conditions she lives under is disturbing!

Birgitte is too sick to fight against the system, but she has many friends who want to help her. Therefore people now try to raise money for a lawyer to take the case against the nursing home and try to ensure a more stable care and living situation for Birgitte.

You have the opportunity to contribute some money to the fundraiser? You can donate here on bidra.no!

? We really appreciate all who will support Birgitte, and thanks for all contributions! ?

I also miss the involvement of healthcare professionals, journalists, health officials and politicians in this case I know that there are doctors and other healthcare who read my blog. Come on, you can not help to address this ?? Is there really no one who can stand up for such a sick patient ?? Whats with you journalists? Can not you document how very severe ME sufferers are being treated for more than a decade? Can not you take the case to health policy makers, to other authorities ?? Why does not the community rise up for Michelle? Why is the only thing she gets help from friends, family and fellow patients?

Erna Solberg has called the treatment of ME patients a scandal. Birgittes matter is in any case a scandal!

I could have told even stronger images and stories from Birgittes life at the nursing home, but it should not be necessary. There must be something in this matter now.

All photos of the matter is Birgittes private. This article is published with permission Birgittes.
 

Kalliope

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Brilliant @AndyPR ! Thanks a lot! Let's hope some bloggers and others here and elsewhere will share Birgitte's story. You and @mango have done the job for international activists much easier. :thumbsup:

Even though I fear she might risk sanctions from her carers by going public, she wants her story to be told and she has been crying out for help for a long time.

Many people have tried to intervene, there's been media-coverage, experts on ME visiting, but the situation remain unsolved and unbearable.

(I don't know Birgitte personally, but from social media - including her own public posts)
 

SilverbladeTE

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And folk wonder why my thoughts on the murderous abuse of M.E. patients resemble my thoughts on what the Nazis did and how those sons of bitches were dealt with?

Most folk ANYWHERE in the world are decent, but, "group dynamics" are such that socio and psychopaths,or just plain willfulky evil scum, nearly always end up in positions of power
This leads to abuse
The victim's "type" doesn't matter: Jes, black, Protestant, Catholic, Orthodox, Moslem, Pagan, thin, fat, short, tall, female...
Whatever, the type is seen as a "weak minority who can't hurt the scumbag" and the scum ag will NEVER see reason or mercy or compassion or admit they were wrong, because that would mean they toemented a terribly sick woman who couldn't fight back because they are stinking arrogant evil COWARDS

really, our victimisation is a microcosm of the foulness and struggles that go on across our societies, what does that tell you?
As the old saying goes, more or less: you can judge a society by how it treats it's weakest members
 

taniaaust1

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The photos are quite shocking. Her legs look very similar to my gran's when the latter had years of leg ulcers - this was in her seventies/eighties, etc. The gnarled hands - I've heard of hand problems with at least one other severe ME sufferer. Not sure how common it is. I think in the other case, the patient's hands had gone into spasm, and the fingers were permanently deformed because there had been no medical intervention. It was so long ago, I can't remember the details though. I could be misremembering.
Her leg issue looks like the patchy kind of look POTS patient can get on their legs (or they can just all go red). My legs used to go exactly like that a lot. There could also be some link with mast cell disorder and this as when my legs were going all blotchy like that I also seemed to have mast cell activation going on (skin writing disease or whatever its called and darier sign).

I wouldnt be surprised if hand deformatities are common in severe ME In my own case when I have a very severe crash my hands can go deformed but in a different postioning then hers are.

My fingers just bending at joints in stiff postures eg I can end up with the fingers just bend at the first joint by the nail but the rest of finger is rigid and they will like naturally be taking these weird postions when my hands are at rest. The rest of my body can take up like spastic positioning too eg hands from the wrists twisting up and inwards. The sicker I get, the more spastic I can look.
 
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taniaaust1

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Even though I fear she might risk sanctions from her carers by going public, she wants her story to be told and she has been crying out for help for a long time.

Many people have tried to intervene, there's been media-coverage, experts on ME visiting, but the situation remain unsolved and unbearable.

(I don't know Birgitte personally, but from social media - including her own public posts)
she's probably got no choice but to go public even if it puts her at more risk, her situation wouldnt have much hope of changing for the better any wise. Abuse hides behind silence.

I have commented on the link but I dont know if it worked. Many of the issues she's having, Im having too.
 

Justin30

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Absolutely appalling and saddening. I dont understand the denial by the medical profession when you see cases like this.

Are Drs, Nurses, government and politicians blind when the see this stuff?

ME in these states is absolutely aweful the denial by people in power needs to stop!

These situations are the ones that need to be shown to the masses cause guess what many so called viruses, bacteria and parasites results in this awefulness....

Makes me so angry...the disease had been seen in people since the 1930s.....

Enough already.

I personally think that these severely ill need to have pictures, short videos, and maybe even audio recordings that need to be shown to the world.

Its just fricken messed up...real life inhumanity and cruelty...

Im so angry when I see this.
 
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I'm donating this morning. Breaks my heart reading about it as this is what I went through during the first 2 years of being bedridden only it was my parents leaving me to starve and lie in my own bodily crap and vomit while under their own roof.

Improving enough to force myself to crawl, inch by inch over many hours a few times a week to get to food is the only thing that kept me alive after those 2 years of lying there as i was threatened with a pillow over my face if I didn't start improving. (For my own good, of course)

I'm one of the very lucky ones who managed to eventually escape and be able to live alone. It took ten years to get out of there though.

It makes me rage inside every time I hear of someone going through this abuse. I can't bear it.

Taniaust is right, abuse definitely hides in silence; something we have in abundance when that ill. Speaking out must be a terrifying thing to do for Birgitte especially when her life is in their hands. They are souless monsters. I hope someone who can actually help her hears her story :(
 

SilverbladeTE

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Absolutely appalling and saddening. I dont understand the denial by the medical profession when you see cases like this.

Are Drs, Nurses, government and politicians blind when the see this stuff?

ME in these states is absolutely aweful the denial by people in power needs to stop!

These situations are the ones that need to be shown to the masses cause guess what many so called viruses, bacteria and parasites results in this awefulness....

Makes me so angry...the disease had been seen in people since the 1930s.....

Enough already.

I personally think that these severely ill need to have pictures, short videos, and maybe even audio recordings that need to be shown to the world.

Its just fricken messed up...real life inhumanity and cruelty...

Im so angry when I see this.
I could go on at GREAT length at how much people simple *refuse* to see
but I will give two important points:

#1 Look at how many refused to acknowledge the existence of concentration camps and what went on in them
and that doesn't just count for the *Nazi* ones, even when they were living near them.

#2 "There are none so blind as those who WILL NOT see!"
That Jesus fella had a lot of very good points about the grittier ugly truths, which is why today he'd be murdered in two seconds flat if he was walking around pointing out the inequities and "Emperor's new clothes are dripping with the blood of millions of innocent peoples' blood"
and doing it so damned effectively.
this is why the corporate media controls 99% of communications and spews such constant lies.
See what they have done ot us:
"oh it's chronic fatigue SYNDROME!"
"Oh yeah we get it, like, it's all in there head!"
"Right! lazy buggers!"




#3 many people don't WANT to see, to think, to wake up





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