The Norwegian ME Association's report on severe ME

They are for different cohorts within the spectrum av 'severe' - often we talk about severe as beeing one and the same thing, but it's really a spectrum on it's own.

The report uses:

• severe-moderate
• severe
• very severe
• extremly severe

Even if the differences in procent on functionality scales are small, the difference in life quality between lying in a coma-like state and beeing able to even sit up in bed and maybe even getting dressed is huge. That's the difference between extremly severe and very severe, as used in this report.

 

Just a reference to how severe ME is viewed, just had a guy around for fire safety check. He’d been told I had MS and tactfully suggested I was likely to get worse. I pointed out not necessarily and I have ME, he then said oh it could just “clear up”then ?! That’s the narrative issue we have , it’s complex varied and always undermined by the misrepresentations out there.

 

ABCNyheter has written another article about the report.

This time they interview Ingrid Helland, senior doctor and leader of the National Competence Center for ME/CFS. She is known for a biopsychosocial approach to ME and there was recently a petition with over 7 000 signatures asking for the removal of the leadership of this center.

She confirms there is little knowledge about ME. One of their tasks is to spread information, but that's not possible for them to do if health care personell aren't requesting seminars, she says. The head of Norwegian Association for General Practice says that if they believe reaching out to GPs by expecting GPs to contact them it's a strategy that won't succeed. One must be a little more active.

Helland says that the most important thing for ME patients is that they get "an adapted, individual offer for the and that the patients and relatives experience security and predictability".

The competence service hopes to achieve this by taking the issue to the Parliament.

- The competence service is part of the National Professional Network for long-term fatigue of unclear cause. We lead this network, and in this connection we will soon send a letter to the Ministry of Health and Care Services, where we have suggestions on how the situation can be improved for the patient group, as well as what kind of offers both the specialist health service and the primary health service should offer the patient group.

- What makes the ME field so complicated?

- Well... The nature of the diagnosis, its lack of biomarker, can allow for different understandings. Unfortunately, it has become such that there are two "schools" - those who look at ME as a pure biomedical disease, and those who have a broader perspective and look at the disease based on a bio-psycho-social understanding. It has resulted into steep fronts between these schools.

- I wish there weren't such strong fronts, Helland says.

She emphasizes that both sides agree that these patients are actually sick and that they "undoubtedly have a large symptom pressure and low level of functioning."

ABCNyheter: Leder for kompetansetjeneste for ME: Vi har et stort ugjort arbeide
google translation: Head of Competence Service for ME: We have a lot of work undone

 

@Kalliope so in conclusion... simply incompetence on all levels from that Center

 

I hate lies like this, such egregious dishonesty in an official capacity. The distance between the 2 "camps" could not be wider and the main obstacle is precisely that one camp advocates for patients while the other specifically and explicitly sabotages all efforts towards a solution.

That would indeed solve everything. Go. Away. It's absolutely not normal that a patient community should have enemies doing everything in their power to prevent any and all progress. Counting from Norway's population and 7K signatures works about to the whole of the patient community. There should not be such a thing as medicine that not only dismisses consent but actively and explicitly against strong objections, bullying ideological nonsense with nothing by death and suffering to show for it.

This comic half-applies because it's meant for a different context but the point remains:

Go bully other people or do it on your own free time if you really have to dismantle whole human lives to feel something.

 

What a nasty and bigoted view of the controversy from Helland. I wonder if she really believes that is the cause of the divide, or if she has decided to cynically stigmatise patients for raising concern about poor quality research that harms how they're treated? "Unfortunately some patients are very stupid, and so criticise our sophisticated view of things. I wish that they weren't so stupid."

How is Helland in this job?

I thought it was because of you and your colleagues that patients want to avoid contact with the medical community Helland!

Maybe the reason patients are more positive about GPs is that they've not been 'reached' by the 'competence' service?

Not only is Helland rubbish, but she's so bad at hiding the fact she is rubbish. It's amazing to me that she is on her position.

 

Seeing as they ignore 90% of the disease presentation and completely shut out the patient community, treat us with contempt and mock us openly, that's either a completely delusional claim or a massive dishonest one, most likely a combination of both.

The psychosocial perspective could not be any narrower. It is obsessive over things that aren't even at all connected to the disease, to the point where most of its working assumptions are fictitious. I guess that could be described as broader, in that it brings in fiction along with fact? Maybe in a cheap philosophical sense, but definitely not in a useful one.

It's closer to shamanism than medicine anyway. Very "holistic". Just not at all useful, not in the least.

 

This is getting to me. Why people with no stake or interest in the matter are even getting involved at all. What are they getting out of it? They're failing massively, are hated by the patient community for it and have actually managed something incredible: to regress an entire field of medical research. ME went from unknown entity garnering curiosity and indifference to one subjected to contempt and systemic discrimination. By all counts everything has been made worse by the psychosocial hostile takeover.

What happens to us is irrelevant to them. It makes no difference. They could spend the rest of their lives not thinking about us and it wouldn't change anything to their lives, it doesn't even affect them personally. So why get involved at all? Why not do something else, something that doesn't result in catastrophic destruction of human life?

They have no insight or relevant skills, no personal involvement, have produced nothing of value whatsoever. It makes absolutely no difference to them, there is plenty of other work out there. So why do this? Why sabotage an entire disease like this? That's what I don't get. Who enjoys massively failing like this?

 

Yet another article about the report from ABCNyheter. This time as a an editor's comment by Kathleen Buer where she asks people to stop judging those who are sick as it may lead to worse prognosis. Low status of certain illnesses leads to less research, lack of treatments and as a consequence a worse prognosis. She uses ME as an example of this and says it's about time the stigmatisation of patients stop.

ABCNyheter: Slutt å dømme de syke, det kan gi dem bedre prognose
Google translation: Stop judging those who are sick, that may lead to better prognosis

At the end of June, ABCNyheter mentioned a recent report about ME. It shows that those with severe degree are among the sickest in Norway.
"The most severe patients are so ill that if it was another disease one would have thought they were dying," the report says.
There have been few studies on ME. In addition, ME patients are faced with a lack of understanding from the health sector.
ME sufferers are often faced with skepticism. They are accused of being hypochondriacs, or that they are downright lazy.
It's time we put a stop to the stigmatization of sick people.

 

Re:
"ME went from unknown entity garnering curiosity and indifference to one subjected to contempt and systemic discrimination. ....."

What if that is the goal?

 

The news site ABC Nyheter delivers once again with another article on ME, referring to the report on severe ME from the Norwegian ME Association.

They've interviewed a 31 year old woman with severe ME. She says it's only thanks to her boyfriend and her mother that she has had some help. Next to nothing has been offered from the health services. She was sent home from an institution with the message that she was too sick for them and then just abandoned from everyone besides her family. Now the boyfriend is exhausted and they are thinking about splitting up in order to save his health so that their children won't end up with two sick parents.

The article mentions the national competence center for CFS/ME having stated that they have a lot of undone work to do and also that there's been a petition among patients for the removal for the leaders at this center which got over 7 000 signatures.

ABC Nyheter: Elisabeth (31) er alvorlig ME-syk: - Har mistet all tillit til helsevesenet
google translation: Elisabeth (31) has severe ME: - Has lost all faith in the health services

 

There are no words for this. Well, besides criminal negligence. Imagine arguing the fire department went home because the fire was too big and therefore not their problem anymore. It's hard to believe actual medical professionals used those words and thought them reasonable.

Whatever the intent or thought process, this is dehumanization. It's little different from watching someone drown and not be bothered with helping because there are other things to do and people who go swimming are expected to know how to swim anyway.

 

Hi @trudeschei, just wondering if an English version of this report is imminent? I'm wanting to include it in #MEAction UK's submission to the National Institute for Health and Care Excellence as part of their call for evidence as they update the UK ME/CFS guidelines. I can do this including some basic google translations, as it is so powerful, but if there was an English version available, even if just a summary, this would be most helpful. Thanks.

 

Thanks. It will be useful!

 

there are some who still do not know about this report and that is why i logged in to post this post.

i do not want this report to go unnoticed or forgotten!


wouldn't it be great in every mp and congressman/senator's physical and email mailbox everywhere, with all of the graphics, in color? or several un special rapporteurs, and human rights ngos.

if a covid connection can /legitimately/ be made, that might or might not be worth pointing out [we probably don't know yet whether it can except as a "long covid could in principle look like this. do you want to take the chance that it will not?"].

perhaps the report can serve as a model for presenting evidence for legal actions including but not limited to criminal human rights charges.


incidentally here is something from japan that corroborates. https://mecfsjapan.com/mecfs-in-japan/

 

@trudeschei Did you manage to get an English translation done at any point?

 

Yes please! How quickly could it be done, do you think?