Norway - series of articles about ME in the newspaper Klassekampen, 2022

Post copied from the News from Scandinavia thread

A feature article (paywalled) in the Norwegian newspaper Klassekampen titled: Missing: Emilie

It's about 23 year old Emilie who suffers from severe ME.

The article describes in detail her every day life and the battle against those who should be there to help.

For instance when Emilie was still at school and a school outing was planned. Emilie's mother applied for a wheel chair in order to make is possible for Emilie to participate. The occupational therapist who received the application was instead about to send message of concern to the Child Welfare Services. The mother didn't ask the municipality for help again until Emilie had turned 18 and had become too old for the Child Welfare Services.

When the family moved to a new house, the scheduled ambulance never turned up, and they had to come up with an alternative solution on the spot.

The article described how inventive her family has been to find solutions to give her the care she needs and how she's too ill for visitors, so she communicated with the journalist on e-mail.

One of the questions Emilie is asked is what she'd do if she was Minister of Health for one day. She answers:

- Earmarked funding for biomedical research into ME over the state budget
- 24 hour institutional care for very severe ME sufferers
- An administrative coordinated care for ME sufferers in need of care, in order to lighten the burden of family carers
- An ME team in the municipalities with psychologists and school nurses

Psychologist Lishaugen in Emilie's municipality discovered the sub group ME patients when she started working with adolescents with long term school absence. She says they're a really invisible group. So alone with their parents. Often only in contact with their GP.

"I picture all the threads in their network, everything they have of school, hobbies, friends and neighbourhood, and see how each thread becomes more and more frayed. All of a sudden, this thread is gone as well. In the end it's just them".

https://klassekampen.no/utgave/2022-02-26/savnet-emilie

 

Another great article in Klassekampen today interviewing professors Karl Johan Tronstad and Øystein Fluge.

The article is paywalled, so here's a summary:

They say the cause of the disease is still unknown and you can take samples from severe, bed bound ME patients and get normal results.

- It certainly doesn't mean that they're healthy. This means that the correct test method is yet to be found.

They talk about their research in general and about their recent study on blood tests from 83 ME patients where they found changes in over 300 molecules, indicating that something has happened to the energy metabolism.

They believe the self-regulation of the blood supply doesn't work optimally in ME patients. They see that ME most often occurs after an infection and believe there is an autoimmune mechanism at the bottom. A consequence of this is energy failure which leads to even more changes in the metabolic patterns.

They therefore believe that there is a primary effect of the disease and subsequent secondary effects.

- When the body undergoes an infection, such as mononucleosis, autoantibodies appear as part of the body's immune response. But in some of us, this immune response doesn't calm down - instead, it causes persistent disturbances that seem to affect the blood vessel's ability to fine-tune blood flow according to the needs of the tissue.

- For patients, this leads to fatigue, malaise and cognitive problems - especially with physical or mental strain. The body will often compensate, for instance by activating the autonomic nervous system, or by adapting how the body utilises nutrients.

- Whether it is the primary vascular disorders that affect the clinical picture or the secondary compensation mechanisms, will vary from patient to patient.

They end with saying that there is hope as there is no organ damage or inflammation in the tissue, which gives reason to hope ME is a reversible disease, we just need to find the right buttons to push.

https://klassekampen.no/utgave/2022-03-07/leiter-pa-celleniva

 

New article today. This time an interview with two sociologists and researchers, Line Melby and Anne Kielland, from an ongoing research project about the health care service and ME.

They say that in average 1 852 people are diagnosed with ME in Norway annually.

70% deteriorate some or a lot after a stay at a rehabilitation clinic

More than 90% of the patients deteriorate after work assessment

Anne Kielland says it seems to be a big distance between ME sufferer's own view of their situation, and the explanatory models they are met with.

- The services that are offered, reflect these explanatory models. We've used Maslow's hammer to describe the dynamic that arise between the patients and the help services. When the only tool you have is a hammer, everyone must become a nail.

When it comes to the Norwegian Labour and Welfare Administration, Kielland says ME seems to be singled out. Usually it's the level of disability that makes you qualify for support, but an exception is made for ME patients. Caseworkers are obliged to asses the illness from both social, psychological and biological explanatory models.

- ME patients are singled out as a particular group due to lack of objective, medical markers. It seems this is a reason to legitimise the stigma. Lack of objective, medical markers goes for a spectrum of diagnoses, from migraine patients to neurological-developmental diagnoses and psychiatry.

When it comes to lack of aids and help with symptoms, Line Melby thinks the reason can be lack of time, knowledge and acknowledgment. But she also adds that throughout their material patients have told of a least one health care worker who has seen them and offered help.

https://klassekampen.no/utgave/2022-03-14/tilbudene-gjor-dem-sykere

 

Wikpedia about the newspaper:

https://en.wikipedia.org/wiki/Klassekampen

 

yes, the newspaper's origin was hard core communist, but today it's a general "leftish" newspaper, like the Guardian. In fact, George Monbiot used to be a regular writer for them.

ETA: Or at least they regularly translated and published articles from Monbiot

ETA: ... but when it comes to the regular critical pieces about transgender people by an independent contributor to the newspaper, I have no excuses

 

Do they give a reference for that ? Incidence is very poorly recorded which makes understanding recovery rates very problematic. That Norway figure would translate as 23k new cases a year in the UK which when matched with published age of onset figures would mean 70%+ lifetime recovery rates.

 

It's based on their own numbers.
Google translated section from the article (Sintef and Fafo are the research organisations behind the study):

- Every year, an average of 1852 people are diagnosed with postviral fatigue syndrome in Norway, or ME / CFS, according to completely new calculations from Sintef and Fafo.

 

Thank you. I think that "postviral fatigue syndrome" is doing a lot of work !