We are fundraising to help a 14-year old girl who suffers from severe ME

Norsk versjon her

In Norway right now we have one of the most severe cases this country has seen when it comes to ME.  A 14-year old girl is forced to receive treatment of sensory stimulation. This blog post is just meant to inform about the situation, not to start fundraising abroad.

The girl was admitted to hospital of her own free will to start tube feeding.  She was not able to eat enough to sustain her weight.  Once admitted, the hospital decided that she needed to stay, if she left the hospital she was not allowed to keep the feeding tube.  If her family took her home and refused to follow the hospital’s management plan with directions of Graded Exercise Therapy GET and Cognitive Behavioral Therapy (CBT) they would take her feeding tube away.  The girl’s condition continued to deteriorate during her 3.5 month hospital stay. Finally, the family reluctantly agreed to the management plan the hospital made for the girl, with activities and stimulation.

The family does not have enough money to pay for legal help from a lawyer, and ask for help. However, this translation is mainly to inform our English speaking contacts about the situation.

The group that initiated the fundraising wrote a letter (in Norwegian, use Google translate) describing the situation.  This is a private fundraising to pay for legal help, a lawyer,  for the girl.  We ask that those who know the case – or think they know it – do not share who this girl is.  The family needs to be protected.  Everybody who has seen or been in close contact to a severely ill ME-patient know how important it is to shield the patient for him or her to heal.    Unfortunately the health services has not understood this point.

To learn more about severe ME, please read the book «Severe ME» by Greg Crowhurst, he describes the symptoms of severe ME:

‘To not understand, not be able to explain, not be able to formulate words, not be able to perceive, not be able to express yourself, speak, describe in full, identify the fears of the reality you’re in, in the shaky, noise reality in your central nervous system, which is the cause of the extremely destructive chaos in your head and body’

The book “Severe ME – a guide to living” by Emily Collingridge:

Many are bedridden and require constant care. They have a complex range of problems (often including loss of movement, speech and the ability to eat) as well as difficulties with basic day-to-day tasks such as washing and toileting and a huge number of extreme symptoms (such as pain, muscle problems, sensitivity to light, sound and touch, flu like malaise, gastrointestinal disturbance, cognitive dysfunction, sleep disturbance, dizziness and paralysis). Patients, loved ones and professionals can be left feeling frightened and totally helpless in the face of such immense suffering.”

All the money will be given directly to the family.

Please share this post.

We’ve had questions on twitter if this really is a true story.  Unfortunately it is. The general secretary in the Norwegian Myalgic Encephalopathy Association , Gry Finstad Molland, wrote this on twitter: at 21.48. 21.1.14.: «Yes, I can, unfortunately confirm that this story is true.  I know the case well. » We thank her for confirming.  Usually she doesn’t comment on individual cases.

Norway is a small country and the family needs privacy, so we cannot write the name of the hospital.  This case is also shared on several pages on facebook.


Dette innlegget ble publisert i Ukategorisert. Bokmerk permalenken.

7 svar til Fundraising!

  1. Tilbaketråkk: Kronerulling til advokat for ME-syk jente under tvangsbehandling | ME-mammas betroelser

  2. The Norwegian account number isn’t very useful for non-Norwegians. If an IBAN number was posted, people could donate from abroad.

    I do wonder, doesn’t Norway offer free lawyers for people who need them and can’t afford them? At least in Finland it works that way.

    • @fryvil sier:

      That’s true, Maija. We should have stated clearly that we didn’t mean to start fundraising from abroad earlier. But as more people has asked about this, we have now included international bank info.

      And yes, we have a system for free lawyers. Unfortunately this case is not included in such a program, however strange that might seem.

  3. Katharina sier:

    I think in cases like this publicity will be the best protection for the child and the family. I`m a carer of my severely and most severely affected daughters and we decided to publish our story from the time when we got into trouble with authorities. Authorities fear the public like the plague. It was the best decision we could do. It helped us to keep custody until now. Here are the links to our films: Unfortunately only in German language available!

    • @fryvil sier:

      Thank you for sharing this with us, Katharina! 🙂 I’m sure these films will be of great interest to many families.
      It’s very sad indeed, when peolpe have to take such steps to protect their children.
      All the best to you and your daughters!

  4. vomsters sier:

    I was sceptical because the last time I saw this, or an almost identical story, the girl was Danish and in Denmark.

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