The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Appalling conditions for very severely ill ME sufferer in Norway

Discussion in 'General ME/CFS News' started by mango, Sep 20, 2016.

  1. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,973
    Birgitte in Norway is very severely ill and suffering horrendously due to horrific conditions and abuse at the nursing home.

    Please help raise money so she can hire a lawyer.

    You can donate money here:
    https://bidra.no/prosjekt/hjelp-venninnen-vår-til-og-få-en-bedre-livskvalite/b667795f-72c6-4409-835c-edb830700881

    More info in Norwegian here:
    http://www.serendipitycat.no/2016/0...aert-alvorlig-syk-me-pasient-hjelpe-birgitte/

    Google translated English version:
    https://translate.google.se/translate?sl=no&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http://www.serendipitycat.no/2016/09/19/rystende-forhold-svaert-alvorlig-syk-me-pasient-hjelpe-birgitte/&edit-text=
     
    Justin30, L'engle, taniaaust1 and 5 others like this.
  2. Ysabelle-S

    Ysabelle-S Highly Vexatious

    Messages:
    531
    Likes:
    4,145
    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.
     
  3. Kalliope

    Kalliope Senior Member

    Messages:
    367
    Likes:
    3,536
    Norway
    Good! She has asked for help, and sharing her story on social media is one way of helping, also for the international patient community.
     
    Justin30, L'engle, taniaaust1 and 4 others like this.
  4. Ysabelle-S

    Ysabelle-S Highly Vexatious

    Messages:
    531
    Likes:
    4,145
    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.
     
    taniaaust1, AndyPR and Kalliope like this.
  5. Kalliope

    Kalliope Senior Member

    Messages:
    367
    Likes:
    3,536
    Norway
    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.
     
    mango and Ysabelle-S like this.
  6. Ysabelle-S

    Ysabelle-S Highly Vexatious

    Messages:
    531
    Likes:
    4,145
    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.
     
    Kalliope likes this.
  7. AndyPR

    AndyPR RIP PR :'(

    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.

     
  8. Kalliope

    Kalliope Senior Member

    Messages:
    367
    Likes:
    3,536
    Norway
    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)
     
    Solstice, L'engle, Jennifer J and 3 others like this.
  9. 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
     
  10. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,580
    Sth Australia
    and Brian and there is also currently one other as wel we've been hearing about too.
     
    Ysabelle-S likes this.
  11. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,580
    Sth Australia
    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.
     
    Last edited: Sep 20, 2016
    Ysabelle-S likes this.
  12. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,580
    Sth Australia
    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.
     
    Kalliope likes this.
  13. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,279
    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.
     
    AndyPR and Ysabelle-S like this.
  14. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

    Messages:
    1,073
    Likes:
    3,357
    UK
    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 :(
     
  15. 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





    they-live.jpg

    be-seeing-you.jpg
     

See more popular forum discussions.

Share This Page