News from Scandinavia

[mango]

Opinon piece in the journal of the Swedish Medical Association, by prof Jonas Bergquist and others.

Postinfektiösa tillstånd kräver kunskapsstyrning
https://lakartidningen.se/opinion/debatt/2022/09/postinfektiosa-tillstand-kraver-kunskapsstyrning/

BPS proponents David Gyll, Carl Sjöström and Henrik Vogt wrote a reply:

Brett perspektiv ger precision vid postcovid
https://lakartidningen.se/opinion/debatt/2022/10/brett-perspektiv-ger-precision-vid-postcovid/

Google Translate, English ("Broad perspective provides precision in postcovid")

[...] It is perfectly possible to respect and value patients' symptoms and experiences, while maintaining a healthy scepticism about dubious pathophysiological theories. Postinfectious symptoms have a history of controversial diagnoses such as chronic Lyme disease and myalgic encephalomyelitis [5]. Long covid is a diagnosis created by patients on social media [6]. This highlights the necessary constructivist understanding of diagnoses.

Karin Johannisson writes in LT [7] that one aspect of every diagnosis is illness as a cultural construct [...]

Believing that genomics, proteomics or other "omics" can fully explain postcovid rests on an epistemological view in which real explanations of cause are seen as occurring primarily at the cellular level. The assumption that this is true of postcovid risks missing important, potentially modifiable, causal factors. In our experience, postcovid has very few similarities with cancer, but overlaps with stress syndromes, fatigue conditions and functional conditions. Patients are helped by interventions drawn from knowledge of this [12].

In order to understand postinfectious syndromes and help individuals, more research is needed that takes a holistic approach to psychological, sociological, anthropological and biological perspectives [13]. The biopsychosocial model can be a tool to achieve this [14].

Bergquist et al recently replied:

Replik: Författarna har missförstått vår avsikt
https://lakartidningen.se/opinion/debatt/2022/10/replik-forfattarna-har-missforstatt-var-avsikt/

Google Translate, English ("Reply: The authors have misunderstood our intention")

[...] Unexplained symptoms are not the same as inexplicable symptoms [5].

The risk of false findings decreases with time [6], so let's look forward and not backward. Pathophysiological theories about the genesis of postinfectious conditions [7, 8] can withstand the healthy scepticism called for by the authors [1, 9]. Globally, it is estimated that approximately 145 million people are affected by postcovid [10, 11]. The WHO urges us to take postcovid immediately and seriously [10, 13].

In Sweden, there are gaps in postcovid care [14], and we are concerned that the development of more evidence-based care is stagnating in a debate that questions the origin, existence and nature of the condition. Postcovid research is no longer about dubiously supported theories. The Litcovid database currently lists over 10,000 published scientific articles on postcovid [15].

Despite over 16,000 research articles on the Web of science, pathophysiological findings, diagnostic codes and criteria, and international guidelines for the related complex condition ME/CFS, commentators write that it is a controversial diagnosis [7, 16-19]. Instead of washing away this stigma, they refer to a criticized 1970 article that claimed that ME/CFS could be nothing more than "epidemic hysteria" [20, 21]. What is remarkable about the reference is that the conclusion of mass hysteria is based on the fact that post-infectious symptoms at the time of the 1955 outbreak mainly affected young women, reflecting an outdated view of human nature [...].

New research on postinfectious conditions at the cellular level can likewise inform us about genetics and prognosis and predict treatment effects. In addition, biomarkers should identify patients who do not suffer from postcovid but from other conditions. The knowledge includes the whole human being, hence also (obviously not only) human cells.

 

[Sean]

In order to understand postinfectious syndromes and help individuals, more research is needed that takes a holistic approach to psychological, sociological, anthropological and biological perspectives [13].

Now that is an arbitrary assumption.

I broke my hand once. All I needed was a simple cast, and it did the job just fine, without any additional psychological, sociological, and anthropological perspectives.

They are engaged in a blatant power grab over everything in medicine, regardless of robustly demonstrated relevance and need.

 

[mango]

Bergquist et al recently replied:

Replik: Författarna har missförstått vår avsikt
https://lakartidningen.se/opinion/debatt/2022/10/replik-forfattarna-har-missforstatt-var-avsikt/

Google Translate, English ("Reply: The authors have misunderstood our intention")

One of the authors comments on Twitter:

"We had a paragraph in our reply where we questioned that the journal of the Swedish Medical Association even publishes a reply that refers to an article from 1970 as support in the argumentation about postcovid. Unfortunately, it was deleted."

 

[rvallee]

They talk so much and say so little. Every argument they make is egocentric and just the same old recycled garbage. Everything about themselves, for themselves, by themselves. Mediocre.

 

[mango]

News etc about the Swedish ME/CFS study published today can be found in the study's forum thread:

Saliva antibody-fingerprint of reactivated latent viruses after mild/asymptomatic COVID-19 is unique in patients with [ME/CFS], 2022, Apostolou et al

 

[mango]

Anna Amholt tvingas sluta – 22 år gammal
https://www.aftonbladet.se/sportbla...sluta-karriaren-blir-inte-frisk-fran-covid-19

Anna Amholt forced to quit - 22 years old

Anna Amholt, 22, is forced to end her ice hockey career.

The former big talent was hit hard by covid-19 just over two years ago.

- Of course, it feels very sad. But it's time to accept the situation, she says.

Amholt was one of Sweden's most promising hockey talents when she was struck by covid-19 two and a half years ago. Since then, life has not been the same, with recurring fever, fatigue and muscle aches, among other things.

- I found that 21 hours of rest a day works very well, she has previously told Sportbladet.

On Wednesday, the 22-year-old announced that her career is over in an interview with Swedish Radio.

- I can barely walk up and down the stairs these days, she said.

"Time to accept the situation"

For Sportbladet, Amholt says that she has realized that her career is over a while ago, although she has not expressed it outwardly.

- Of course it feels really sad. But it's time to accept the situation, so I can get on with trying to build a new life and find some meaning in it.

A tough decision for Amholt, who decided to become a hockey goalie when she was just three years old.

- Yes, I have breathed hockey. I take steps towards accepting my life situation every day. I even go to a psychologist every week to get help with that," she says.

How is your physical status today?

- It's not super sharp. It goes up and down a lot at times. I'm in a worse period right now, so I don't have much energy. I get symptoms easily when I overexert myself.

Being assessed for ME

Amholt says she is being investigated for ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome, a serious, chronic, multi-system disease in which the nervous system, immune system and energy production are affected.

- For people who have ME, it has often been triggered by a viral infection. Then, long covid and ME seem to be extremely similar. So they (doctors) may not know which is which either, or if they are the same thing.

Anna Amholt, who last played for HV71, has won a Swedish championship gold medal with Luleå and was named the best goalkeeper at the 2018 World Cup when Sweden took silver.

 

[RedFox]

Anna Amholt tvingas sluta – 22 år gammal
https://www.aftonbladet.se/sportbla...sluta-karriaren-blir-inte-frisk-fran-covid-19

Really sad. She's not the first hockey player to be sidelined by long Covid either. Brandon Sutter hasn't played since the 2020-21 NHL season. Then there was Dr. Mark Vink, a major ME advocate.

 

[Ravn]

Good article in the Danish newspaper Information.

In an interview with BT on 24 September, the deputy director of the Danish Health Authority rejects the ME patients' experience. The journalist writes that she has spoken to over 100 ME patients, who all say that the Danish treatment worsens their condition. To which the deputy director replies: "It's simply not right." [A better translation would be "That's simply not correct."]

The Danish Health Authority will not even acknowledge our lived reality and the fact that many have tried to gradually introduce more activity into our lives, as the Danish Agency recommends, but that our condition is getting worse as a result. The research has a name for the worsening, which is called post exertional malaise , where we experience marked exhaustion and increased symptoms the day after even the slightest bit of exertion.

So it is not a question of reluctance to involve ourselves in our own treatment. But the Danish Health Authority simply does not consider our testimonies about our own bodies to be credible.

original Danish:
https://www.information.dk/debat/20...nter-behandling-danmark-lytter-ingen?lst_tag=

Google translated:
https://www-information-dk.translat...=da&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

 

[rvallee]

This reckless attitude reminds me of this. When you can simply reject reality and substitute your own, nothing matters anymore.

"Well if that were true it would be terrible. But it is not."

And these people make a show out of pretending to listen to patients. Then they simply reply: you're lying, we know better.

 

[mango]

BPS article on a ME case study, written by a GP at the ME center in Linköping, Sweden. Published in AllmänMedicin (the journal of the Swedish GP organisation SFAM).

Att stoppa snöbollar i nedförsbacke
https://allmanmedicin.sfam.se/p/all...snobollar-i-nedforsbacke/1919/584871/31111895

Stopping snowballs on a downhill slope
- presentation of a transdiagnostic clinic for long-term complex fatigue and the importance of accurate differential diagnosis and anchoring of a constructive explanatory model.

 

[mango]

Opinion piece in a local Swedish paper.

ME-patienter behöver tas på allvar – nu
https://www.lt.se/2022-11-18/me-patienter-behover-tas-pa-allvar--nu

ME patients need to be taken seriously - now

My mother is one of many people in Sweden who suffer from ME (myalgic encephalomyelitis/chronic fatigue syndrome). Every day she is met with ignorance, ridicule and belittlement. Not least by health professionals, LSS administrators and the Social Insurance Agency. Although all symptoms were present, it took several years before a referral to an ME clinic was issued. Despite all medical certificates and ADL assessments proving the mother's need for help, the LSS refused the application for special support.

Medical statements such as "You're probably just stressed", "It's probably anxiety" are some examples. This is just the tip of the iceberg of what life is like for my mother with ME. Our society ridicules and distrusts a whole group of people who have no power to fight back.

The National Association of ME Patients describes ME as "a serious, chronic, multisystem disease in which the nervous system, immune system and energy production are affected. Current research suggests that overexertion triggers a reduction in aerobic energy production, which appears to be long-lasting or, in the worst cases, permanent. Research and medical experience have established that ME is one of the world's most debilitating diseases".

In other words, ME is one of the most debilitating diseases in the world. At the same time, there are hundreds of stories just like my mother's, stories in which the patient is repeatedly questioned and not trusted. In January 2018, a 44-year-old ME patient took her own life because she couldn't cope with her illness and the knowledge that she would never be taken seriously. Yet nothing is being done about the problem. [...]

 

[Kalliope]

Yesterday there was a debate about ME in the Norwegian Parliament and these two propositions got a majority of votes (google translated):

- The Parliament asks the Government to go review regulations and practice to ensure that CFS/ME sufferers right to equal treatment is safeguarded in view of demands for appropriate treatment when applying for disability benefits

- The Parliament asks the Government to review regulations and practice to ensure that CFS/ME sufferers during clarification are not subject to requirements for treatment that is unavailable, or are refused in the public healthcare system

Patient advocate Sissel Sunde has written a thorough article about the history leading up to this:
Historisk dag for ME-syke
google translation: Historical day for ME sufferers

 

[Kalliope]

New article from the Norwegian broadcaster NRK about 25 year old Aurora who suffers from severe ME and now has lived against her will in a care institution for old people for over nine months. Local politicians are now asking the municipality to do something. Her wish is to move back home and receive the care she needs there.

NRK: Ber helsebyråden gripe inn og hjelpe Aurora: - Burde satt inn alle kluter
google translation: Asks the health board to intervene and help Aurora: - Should have done everything in their power

Aurora is also on Twitter and has written a thread about her stay at the institution, where the health care workers there obviously lack even a basic understanding of ME and some even are annoyed at her, leaving her very vulnerable.

 

[Dolphin]

Yesterday there was a debate about ME in the Norwegian Parliament and these two propositions got a majority of votes (google translated):

- The Parliament asks the Government to go review regulations and practice to ensure that CFS/ME sufferers right to equal treatment is safeguarded in view of demands for appropriate treatment when applying for disability benefits

- The Parliament asks the Government to review regulations and practice to ensure that CFS/ME sufferers during clarification are not subject to requirements for treatment that is unavailable, or are refused in the public healthcare system

Patient advocate Sissel Sunde has written a thorough article about the history leading up to this:
Historisk dag for ME-syke
google translation: Historical day for ME sufferers

I’m afraid I am not exactly sure what these propositions say. They might be useful for other countries to refer to but I’d like to be sure I know what they mean.

Who is refusing the treatment in the second proposition? Is it saying a patient has a right to refuse treatment and it shouldn’t affect their right to get disability payments? Or is it saying if the public health system refuses to offer the treatment, the patient can’t be blamed for not having done it?

 

[Midnattsol]

Not ME but MS, I found the focus on disease mechanism quite nice...

Google translate: International researchers propose a new definition of the disease MS

Traditionally, it has been common to divide the disease into different groups. Relapsing-remitting MS (RRMS) has been defined as a disease characterized by periods of reduced function in parts of the body, which then return. Repeated attacks increase the risk of increasing functional impairment. Progressive MS is characterized by the disease gradually worsening without symptom-free periods.

The authors behind the new article suggest instead viewing MS as an ongoing disease process that is influenced and driven by underlying mechanisms of damage to the nervous system, which is balanced out by the body's ability to repair or compensate for the damage.

- Describing MS based on underlying biology rather than how it appears clinically will require a better understanding of the mechanisms that contribute to disease progression. This article reviews ongoing research to uncover and demonstrate the underlying biological mechanisms that are active in individuals with MS, and identifies knowledge gaps, says first author and professor Tanja Kuhlmann in a press release.[\QUOTE]

 

[Kalliope]

I’m afraid I am not exactly sure what these propositions say. They might be useful for other countries to refer to but I’d like to be sure I know what they mean.

Who is refusing the treatment in the second proposition? Is it saying a patient has a right to refuse treatment and it shouldn’t affect their right to get disability payments? Or is it saying if the public health system refuses to offer the treatment, the patient can’t be blamed for not having done it?

Am a bit confused myself.

The first proposition I believe is an answer to what the research project "TjenestenogMEg" has revealed, that case workers have been asked to be specifically thorough when patients with ME or with drug/alcohol addiction applies for disability benefits.

The second proposition is a bit confusing. Perhaps it means that an ME patient can't be asked to undergo psychological therapy if no therapists see the point.

 

[Solstice]

Am a bit confused myself.

The first proposition I believe is an answer to what the research project "TjenestenogMEg" has revealed, that case workers have been asked to be specifically thorough when patients with ME or with drug/alcohol addiction applies for disability benefits.

The second proposition is a bit confusing. Perhaps it means that an ME patient can't be asked to undergo psychological therapy if no therapists see the point.

The stigma around ME is known to us mostly, most people know little about the disease. Most people do know something suffering from addiction, what I never understood is the need to be punitive towards those people.

I've worked at a social work institution where some of my co-workers were there through a program could arbeidsactivering, activate people to work again. Some of the addicted people went of the rails and they were subsequently cut from welfare.

The logic in that completely escapes me, because those people aren't suddenly going to quit needing food, housing and ultimately their hit of whatever. They'll just find other ways to get it, ways that end up costing society a lot more. I don't think people should get punished for addiction but views can differ on that. But even when looking at it from a pragmatic view-point this makes no sense to me whatsoever and it ends up costing a lot more too in economical terms.

 

[mango]

Kan S aureus vara etiologiskt agens för ME/CFS och postcovid?
https://lakartidningen.se/opinion/d...a-etiologiskt-agens-for-me-cfs-och-postcovid/

Google Translate, English ("Can S aureus be an etiologic agent for ME/CFS and postcovid?")

 

[mango]

(Paywalled) Johanna, 49, om att leva med ME – och kampen för att få rätt vård: ”Som en konstig mardröm”
https://www.jp.se/2022-12-05/johann...n-for-att-fa-ratt-vard-som-en-konstig-mardrom

Johanna, 49, on living with ME - and the struggle to get the right care: 'Like a weird nightmare'

In 2019, she was diagnosed with ME. Now she talks about the disease, the struggle to get the right care, and her new book 'Getting answers about ME'.

- 'This whole period has been like a strange nightmare that is so unimaginable in so many ways that it has to be told,' says Johanna Sjöström.

What happens when we separate mental health from physical health, and what does that do to the care on offer? Johanna Sjöström asks herself in the darkened kitchen of her apartment at Dalvik. In front of her is the book she has just finished writing, a book that has taken a lot of energy and time but which has also served as a kind of purpose and a driving force in an existence where effort comes at a high price.

 

[rvallee]

What happens when we separate mental health from physical health, and what does that do to the care on offer? Johanna Sjöström asks herself in the darkened kitchen of her apartment at Dalvik

Ironic, but this is one of the darkest truths with the continued obsession with psychosomatics, it not only ruined medicine's ability to deal with chronic illness, it also effectively made all efforts related to mental health so much worse that they amount to nothing, they ended up mixing so many different things in there that the whole thing could be restarted from scratch and nothing of value would be lost.

Even the data recorded so far are so incomplete and misleading that it amounts to nothing. While they essentially mock suffering they create themselves. Truly the lowest point in the history of the profession: the era where snake oil was made official, ending any separation between science and pseudoscience.