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UPDATE NOVEMBER 2025:
I’m planning a trip to Barcelona, Spain in February 2026 for neck surgery to treat my C0-C1 craniocervical instability (CCI/AAI) at Teknon Hospital with Dr. Oliver, a neurosurgeon who specializes in my genetic disease, hypermobile EDS. This and my neck injury from 2011 has been a major contributing factor to my chronic illness ME/CFS.
The surgery, along with necessary pre-operative testing and imaging, is currently estimated at around 600,000 NOK (50,000 EUR).
This I have to pay myself, while on minimum unemployment benefits from the Norwegian government. Which is barely enough to survive off of in the first place with high living costs, even for those who don’t have extra medical costs. I also have to pay for assistance during my whole stay, since I don't have any family or friends to assist me. My trip to Spain is estimated to cost me 800,000 NOK (68,000 EUR) in total.
Dr. Oliver has already evaluated me and believes I have a very high potential for improvement, as my injury is mechanical. Simply put, stabilizing my neck will strengthen my connective tissue and help my body hold itself together more effectively. Scroll down to read the official medical document that Dr. Oliver wrote to the Norwegian Labour and Welfare Administration (NAV) as proof.
I chose to update this existing fundraiser rather than start a new one, as it already explains the most important background of my health. While I can cover part of the surgery cost myself, I’ll need to borrow the rest from friends. This procedure is my best chance to gain some quality of life after years of being housebound and bedbound, even though I remain extremely chronically ill and without a support system or family.
(If you wonder why I cannot get this surgery in Norway, there’s a large national interest organization that has countless resources about the systemic neglect the Norwegian public health care system has done on people with neck injuries: Nakke og Kjeve - den foretrukne pasientforeningen for nakke og kjeveskadde (Facebook group link))
Any help you can spare would bring me closer to this goal of future adequate quality of life, beyond survival, and is deeply appreciated. With love and kindness, Linn
For more information about health improvement of ME/CFS patients after neck surgery:
1) Norwegian documentary: “Håpets marked” about Norwegian patients who travel abroad for health care. Episode no. 3 is specifically about neck injuries with ME/CFS: LINK
2) Medical proof from my neurosurgeon Dr. Oliver:
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ORIGINAL TEXT from 2024:
"Hi, my name is Linn Hege Langrekken and I'm creating a fundraiser for myself as a chronically ill person with Myalgic Encephalomyelitis, ME/CFS.
I don't get any public health care whatsoever. I have written this myself because it's difficult for other people to understand and comprehend my complex illness. Recently I had success with private health care treatment, but I need money in order to sustain the treatment in hopes of long lasting effects.
Description of ME/CFS from Wikipedia: (watch videos linked at the end of this page for more info about ME)
It's been one year since I got severely ill and bedridden due to a severe infection in June 2023.
I have had health problems ever since I got a neck injury in 2011 and treatment with antibiotics (Cipro) that I didn't tolerate in Vietnam in 2015. Additionally I have become permanently chronically ill after my pneumonia, lung inflammation, in Thailand in 2018.
After the infection in 2023 I was completely bedbound for several months afterwards. I couldn't eat for a month. I'm still 95% bedridden, 22 hours a day, without any official support.
I haven't been outside since June 2023, other than when I have had to attend diagnostics or treatments, which I have mostly paid myself.
I'm not functioning well during daytime, especially cognitively, and I cannot get up from bed before around 15:00. I cannot sleep more than a couple of hours every night and my chronic fatigue includes in particular my brain capacity. In reality I have very low levels of functioning and many symptoms, especially neurologically and cognitively, in addition to stomach-related.
This text that you're reading right now has taken me 5 months to write. A big part of my difficulties is the extreme brain fog, I cannot arrange help as in apply for governmental subsidies or mobility devices for my home.
I can do one thing per day at most.
If I want to wash my hair, that's the only thing I can do that day. I struggle to sit upright and to walk, after being bedridden for so long. I usually cannot get up or down the stairs to my apartment on the second floor.
I want to raise money that will specifically go to:
- Gezonde darmflora Fecal Transplantation 4 rounds: €2800
- Tveitanklinikken Fecal Transplantation 1 round: €800
- Antibodies-tests Redlabs and Vibrant: €1400
Diagnostics and treatment details
I have had 8 general practitioners (PCP) since 2022. I'm not getting help because my health issues cannot be measured by standard blood samples and they don't want to refer me to specialists because of that. Therefore I'm being left on my own without any help whatsoever. I have waited 15 months already and I cannot wait any longer.
I would like to do fecal transplantation (FMT) which helps to rebuild my gut microbiome. I have bacterial gut dysbiosis after previous antibiotics rounds. Recently I did FMT (capsules) from Gezonde darmflora and my symptoms improved a lot. Within a couple of days I felt almost completely healthy again and I could eat normally. My brain functioned much better and I had less fatigue. Unfortunately the effect lasted only for a little while and I have to do more rounds, which I cannot afford. This is a treatment that I cannot get in Norway.
I'm struggling to eat and to consume enough food. It has become worse the past 3-4 months and it's difficult for me to keep my weight. I'm already malnourished. It's starting to become urgent to get help, I'm not going to get better on my own by just resting.
I also want to take a lab test from Redlabs and one from Vibrant in order to confirm my chronic infections and antibodies, something I haven't gotten help with in public health care despite my many serious symptoms.
I don't have any family left except my little sister because I lost my parents to brain hemorrhage when I was a child. I don't have family who can show up and take care of me. I wouldn't have survived without my neighbors and I will die if I get worse than what I am right now.
The municipal health care officials came to visit me in July 2023 after I was sent home from hospital after being mistreated there. The officials claimed that I didn't need help despite that I was 100% bedbound back then and unable to eat or go to the toilet myself. They told me I could give them a call «if I needed someone to talk to». I'm not healthy enough to file a complaint or to sue the hospital and the municipality.
I live in Norway but the country of this fundraiser is set to Germany because I used to live there and I can't change countries on Gofundme. I still have a bank account in Germany and I will pay for the treatment in euros so to receive euros is anyways the best option for me.
Sharing of the gofundme is as important as donations. Please feel free to share."
Linn is a 34 year old woman who lives in Hurdal, Norway. She hasn't worked for 3,5 years. Linn is very grateful for the help she has received from neighbors and friends nearby.
Read more about ME/CFS:
Read more about Fecal Transplantation (FMT) for chronic illnesses, fibromyalgia etc.: (For the record, I have previously done microbiome testing that shows me where my problems lie. I can match my microbiome with the donor's microbiome, thereby ensuring a high chance for success.)
The company that I have ordered and want to order more FMTs from:
Thank you for reading my fundraiser<3
Organizer
