News from Scandinavia

Pretty good overall, but some statements troubled me:

"A lowered metabolic rate and decreased energy is typical in ME..."
(is lowered overall metabolism really present in all ME-patients?
Why do some patients lose weight due to ME while others gain weight if that's the case?)

"The disease doesn't show in a simple blood test, but a tissue sample can demonstrate mitochondrial dysfunction, that is, the cell's energy production isn't working properly."
(When and where do they take tissue samples? If this were true we'd have a biomarker, right?)

 

A frustrating opinion piece in the Norwegian newspaper Klassekampen today by psychiatrist Einar Kringlen. He's an old school psychiatrist who has rejected ME for decades. The article is paywalled, so here's a summary:

He claims ME are among many diagnoses that isn't listed in ICD-10 or DSM-III. He then writes about repetitive strain injury, an "epidemic" in Australia in the 1980's which turned to be nothing after all and caused by media attention.
Then he goes on to ridicule fibromyalgia by pointing to the debate about how many tender points should be required for a diagnosis.

Neurasthenia disappeared as a diagnosis in the 1980's, but patients with tiredness and other diffuse symptoms still needed a diagnosis. The name CFS appeared in USA, even though the CDC has yet to find any somatic causes to the symptoms.

He refers to the Royal Free Hospital outbreak saying that 300 were afflicted with light concentration problems, dizziness and tiredness."Anxiety for polio which at that time was a feared disease, was probably the cause to this epidemic among the nurses". The diagnosis given was ME, because "200 nurses could not get the diagnosis conversion hysteria".

He then says nothing has been detected in ME patients after years of thorough examinations, no sign of inflammation in the brain.

He says that "The British psychiatrist Simon Wessely, threatened on his life by members of the ME Association there" has been talked about negatively by the professors Saugstad/Rønning, despite him being one of the foremost researchers in the field.

He says all doctors know of patients who have experienced small trauma or conflicts complaining about short term headache, pain, tiredness or concentration problems. Some may go to the doctor and end up with an ME diagnosis, which is then written about in the media. Then others with similar symptoms find out that they have this illness, and then the epidemic is on. An epidemic doctors have contributed to create.

Some will claim that ME must be somatic because ME-patients lie themselves down in dark rooms for long periods of time. Firstly, there are likely not many people who stay put in a dark room for a long time, and secondly people can get blind and paralysed or get cramps similar to epilepsy from psychological causes. To lie down in a dark room then you have heard of other ME patients doing it, is not strange.

He ends with: Many doctors see it as meaningless the growing numbers of patients with these diagnosis, but they obviously dare not say what they think, because they'll immediately be branded as ignorant and heartless in the media. When will the ME diagnosis disappear - in ten years?

Hvor lenge vil ME bestå?

 

Einar Kringlen (born 6 June 1931) is a Norwegian physician and psychiatrist Einar Kringlen - Wikipedia

I suppose he does very well - for a ninety year old.

 

Professor in social policy, Rolf Rønning, has written an interesting opinion piece for the newspaper Dagsavisen about why ME patients became an underclass in healthcare.

Quotes:
I have been following social policy debates in Norway for fifty years. A year ago, I began to familiarize myself thoroughly with the situation of ME patients (Chronic Fatigue Syndrome). It was shocking to discover how this patient group has been ignored and harassed for decades.

...

The English expert body NICE came this autumn with guidelines that discouraged the use of the psychosocial services, as well as graded physical exercise, as treatment. This has activated the debate in this country as well, where the support system has relied on the psychosocial approach that has contributed to, and continues to contribute to, requiring patients to be treated compulsorily before they can receive financial support from Nav.

...

In our history, we have had situations where we have failed to address an injustice most people saw. It is clear that our treatment of ME patients would not have been possible if the health policy authorities did not think it was right that this was the case.

...

More than 20 years ago, Avishai Margalit wrote the book "The Decent Society", defining a decent, or civilized, society as a society where institutions do not systematically humiliate citizens, and where citizens do not humiliate each other. Seen from the ME patients' situation, we can state that Norway in 2021 is not a decent society.

Dagsavisen: Med rett til å krenke
Google translation: With licence to abuse

 

Despite decades of offensive contempt and hostility, all of it lies and mindless caricatures borne entirely out of ignorance, it should be said that it was in 2021 that probably the most offensive display of disrespect towards us was published, nearly two years into the biggest outbreak of this disease in history, which this person is entirely oblivious to. Even amazing that he writes about ME "disappearing" in ten years, exactly like an old doomsayer adjusting their end-of-the-world date, again.

I genuinely cannot wrap my mind around being this bad at my job. It's not just the ignorance, the bigotry is excessive, health care without basic respect is unacceptable, and yet this is basically a more honest account of what most physicians are thinking, what is said when the mask is off, as we occasionally see in the professional medical forums. Which is probably why it's so much more offensive: it's closer to the truth that has been hidden behind a façade of pretending to help.

But hardly a surprise, as this is also the year that happens to be the peak, so far, of the golden age of psychosomatics. Which is basically as if astronomy had a major astrological renewal, it's too absurd to even consider. Astronomy is launching a telescope as big as a building to space, medicine has luminaries spitting rage against millions of sick people precisely because it failed them, blaming us for their own pervasive refusal and ideological dogma.

This is no way to do health care, it's precisely the way not to do it, it would be hard to find a more blatant example of contemptuous unprofessionalism, and hardly anyone in medicine will object because it's what the system enforces. The whole thing needs reform, rights have to be respected and this hostile disrespect needs to be rooted out entirely, it doesn't have a place in any profession, let alone this one.

 

Sounds like an article full of misinformation. People with a serious interest in the topic would not believe in so many false ideas (or believe in a psychosomatic narrative).

 

MD and professor Petter C. Borchgrevink has written a short and rather sharp reply accusing psychiatrist Kringlen for despising patients and for insinuating that ME patients are simulating their illness. He says it's obvious that Kringlen has not kept himself updated for many years when it comes to ME. Borchgrevink was one of the researchers in the RituxME-study, but has also been a researcher in several BPS publications. He is leading a clinic for complex symptom illnesses (including ME). Good to see him draw a line when it comes to Kringlen's opinion piece from yesterday.

ETA: Forgot the link: https://klassekampen.no/utgave/2021-12-15/debatt-pasientforakten

 

It occurred to me that Kringlen is so old that he was 29, and presumably at about his creative highpoint, when Imboden pronounced his infamous views on chronic brucellosis and post-Asian flu symptoms in 1960, extending to 1966. "Conversion reaction" was the cutting edge idea of the time, at least for John Hopkins and the US Army. His should be regarded as a useful historical viewpoint - a window into a long-gone age.

 

Professor Kringlen has received another reply. This time from the professors Ola Didrik Saugstad and Rolf Rønning titled The High Priest of the Humiliators.

They say Kringlen is making fun of several diagnoses which he believes were created by the patients themselves and their doctors.

They remind that Kringlen in 2007 characterised ME patients as "tired middle-aged, middle class women" and claimed GET/CBT were effective treatments, precisely those treatments NICE now is leaving behind. They call Kringlen's ignorance catastrophic.

They mention some of the recent progress in biomedical research and say that the allegations concerning patients making death threats against psychiatrists have been rejected by British law.

They say Kringlen has clearly forgotten he's in a professional tradition where significant injustice has been done to large groups of patients because psychiatrists stubbornly have been rejecting somatic approaches.

They end with saying they take it for granted that health authorities actively make sure that people with such attitudes won't have any influence of further treatment of ME patients, as they've done enough damage already.

Ydmykernes yppersteprest - svar til Einar Kringlen

 

The Swedish morning tv-show Malou Efter Tio has posted a video compilation of their "2021 favourites". (I haven't watched it.)

Malous löfte till nästa säsong: ”Vi kommer fortsätta bevaka ME”
https://www.tv4.se/artikel/7cLdu6Zu...ll-naesta-saesong-vi-kommer-fortsaetta-bevaka

They posted about it on their Facebook page too, which is open for comments:

 

Currently front page of the online edition of Ugeavisen Esbjerg.

Marie Louise Ilsøe Gustavussen, very severe pwME, is very slowly improving (such good news!). Her plight and the fight of her parents for decent treatment for her have been mentioned a few times. She is now well enough to be able to write about her experiences. The paper brings her report of a past hospital admission (the last of the 4 articles). Calling it a total nightmare is possibly an understatement.

A victory for those who chose to help
https://ugeavisen.dk/esbjerg/artikel/en-sejr-for-dem-der-valgte-at-hjælpe
https://ugeavisen-dk.translate.goog...hjælpe?_x_tr_sl=da&_x_tr_tl=en&_x_tr_hl=en-GB

Sick in a health care system on the wrong track
https://ugeavisen.dk/esbjerg/artikel/syg-i-et-sundhedsvæsen-på-vildspor
https://ugeavisen-dk.translate.goog...ldspor?_x_tr_sl=da&_x_tr_tl=en&_x_tr_hl=en-GB

Back to life in spite
https://ugeavisen.dk/esbjerg/artikel/tilbage-til-livet-på-trods
https://ugeavisen-dk.translate.goog...-trods?_x_tr_sl=da&_x_tr_tl=en&_x_tr_hl=en-GB

Report of a failure
https://ugeavisen.dk/esbjerg/artikel/beretning-om-et-svigt
https://ugeavisen-dk.translate.goog...-svigt?_x_tr_sl=da&_x_tr_tl=en&_x_tr_hl=en-GB

Or read the printed paper version here (Danish only): https://ugeavisenesbjerg.e-pages.pub/titles/ugeavisenesbjerg/7987/publications/553/pages/28

 

Thank you for sharing the links @Ravn This is nightmarish stuff indeed.

Just adding a quote from the article "Sick in a health care system on the wrong track" and adding that if you want to read Marie Louise's own account of a stay at Aarhus University Hospital it's the last of the links @Ravn shared titled "Report of a failure".

Quote:
According to the new guidelines from NICE, the treatment that Marie Louise Ilsøe Gustavussen was subjected to during her hospitalization in Aarhus can cause severe and lasting deterioration. She and her family regard it as an assault by a Danish health service on the wrong track. The new recommendations from NICE confirm and support pretty much everything that Marie Louise Ilsøe Gustavussen, her parents and the doctors around her have said and done all along.

 

https://avisen.nu/mystiske-symptomer-ramte-datteren-pludseligt/

https://avisen-nu.translate.goog/my...eligt/?_x_tr_sl=da&_x_tr_tl=en&_x_tr_hl=en-GB

 

https://mecentraal.wordpress.com/2021/12/15/🌍research-conference-oslo-november-22-23-2021/

 

A segment on a Swedish local radio show yesterday. Musician Jonas Widén says had severe ME for 4 years, but has now recovered through positive thinking, mindfulness, meditation, yoga, psychology, activity and an anti-inflammatory diet. He believes that doctors telling ME patients that the disease is chronic is a very big obstacle to recovery.

Starts 1 hour 3 minutes in.

https://sverigesradio.se/avsnitt/1866930

 

Recovery from ME through simple interventions like diet change, relaxation or positive thinking is like little green men from Mars coming to visit. It only happens when there are no independent observers that can document what happened.

(if some people know how to make a recovery happen, why are there no recoveries in clinical trials?)