News from Scandinavia

[Trish]

30 – 45 min: Metacognitive treatment as a method for common understanding; sparking salutogenesis throughout psychological empowerment
Ingunn Leeber (ph.d. candidate, GP)

Why is it that when people do PhD's in this stuff they fill their sentences with jargon. What on earth is metacognitive treatment, and what is 'salutogenesis'?

'In this proposal, we will summarize the actual scientific knowledge on theories on MUPS'. That should be a short session. The clue is in the name 'medically unexplained'

 

[Sean]

In this proposal, we will summarize the actual scientific knowledge on theories on MUPS...

Shouldn't take long.

 

[mango]

The Swedish Social Insurance Agency (Försäkringskassan) has published a social insurance report on rejected sickness benefit claims (sjukpenning):

Rejected sickness cash benefit claims – A register study of sickness insurance decisions on initial claims and claims after day 180 in the rehabilitation chain.

Original title in Swedish: Skillnader i avslag för sjukpenning mellan olika grupper En registerstudie om avslagsbeslut på initial ansökan och efter dag 180 i rehabiliteringskedjan (Socialförsäkringsrapport 2022:1)

https://www.forsakringskassan.se/wp...OD=AJPERES&CVID=&CACHE=NONE&CONTENTCACHE=NONE

Among physical diseases, fibromyalgia and ME/CFS are the ones where initial rejection of a claim for sickness benefit is most common:

Fibromyalgia: 6.1%
ME/CFS: 5.7%

For comparison purposes:
Average percent of rejections across all diagnoses: 3.2%.
Post infectious syndrome after covid-19: 1%.
Exhaustion disorder 5.4% (“utmattningssyndrom”, classified as a psychiatric diagnosis)
Psychiatric diagnoses on average: 5.1%.

For comparison purposes, here are some numbers from between January 2018 and June 2021 (RR = relative risk for rejection):

Initial rejection
ME/CFS: 4601 cases, RR 1.76
Post infectious syndrome after covid-19: 5953 cases, RR 0.32
Fibromyalgia: 4173 cases, RR 1,87
Exhaustion disorder: 84 536 cases, RR 1,65

Rejection after 180 days
ME/CFS: 639 cases, RR 1.09
Post infectious syndrome after covid-19: 75 cases, RR (0,98)
Fibromyalgia: 1300 cases, RR 1,28
Exhaustion disorder: 38 901 cases, RR 1,14

Here’s the first part of the English summary (read more in the report linked above):

Sickness insurance aims to provide economic security to a person who because of sickness cannot work, and who therefore risks reduced income. Everyone claiming sickness benefits does not fulfil the requirements though. Knowledge of what distinguishes those who get their claims rejected is limited today. Increasing this knowledge can serve as basis both for developing the social security administration and for the legislator to evaluate legislation. This study using data from social insurance registers focuses on rejected initial claims7 and rejected claims after day 180 in the rehabilitation chain8. The aim is to increase the knowledge regarding systematic differences in claims rejection between different groups of insured. The study covers insurance decisions made between January 2018 and June 2021.9

Rejected initial claims
Several physical diseases have low rejection rates, but there are exceptions. The lowest rejection rates were found among physical diseases such as neoplasms, infectious diseases, respiratory diseases, genitourinary diseases, eye diseases, digestive diseases, injuries and, during the pandemic, covid-19 diagnoses. The physical diseases with high rejection rates are musculo-skeletal diseases, nervous system diseases. Symptom diagnoses also have high rejection rates.

Highest rejection rates among psychiatric diagnoses
Psychiatric diagnoses have the highest initial rejection rates of all illnesses and diseases with 5.1 percent compared to the average rate of 3.2 percent.

The concluding remarks say “more complex diagnoses in terms of insurance medicine, where health care providers struggle to present objective disease findings and to establish a solid connection between disease and reduced work ability, have higher rejection rates.”

Here’s a news article on the same:

Bostadsort och sjukdom spelar stor roll för avslag på sjukpenning
https://sverigesradio.se/artikel/stora-skillnader-i-avslag-for-sjukpenning

Place of residence and illness play a major role in refusal of sickness benefit

There are big differences in Försäkringskassan's assessment of entitlement to sickness benefit depending on where you live in the country and what illness you have, according to a new report from Försäkringskassan that analysed decisions on rejections up to June last year.

In Jämtland, an average of 34% were denied sickness benefit after six months of sick leave, but in Östergötland, only 9% received a rejection.

According to Försäkringskassan's Terese Östlin, the agency will follow up the differences.

- It's always worrying when there are differences and you don't really know what they are due to. If they are unfair, it could be that we simply do not apply the insurance equally, and that is really, really not good," says Terese Östlin, national coordinator for health insurance at Försäkringskassan. [...]

The analysis shows not only regional differences, but also that the proportion of people who were refused benefits varied between different diseases. In the case of people with pain in joints and muscles, almost 27% were denied sickness benefit after six months of sick leave. And in the case of exhaustion disorder, more than 21% were denied. This compares with just over 6% who were refused sickness benefit for skin cancer.

- What the study shows is that diseases with a high rejection rate are precisely those where it can be difficult for doctors to verify the person's symptoms with examination findings and perhaps more difficult for the doctor to assess the person's ability to work," says Terese Östlin.

Försäkringskassan will follow up on the differences, but Terese Östlin points out that the agency has already implemented a number of changes in the health insurance system. Försäkringskassan's requirement for examination findings in medical certificates has now been removed. A new organisation is also currently being introduced where caseworkers will receive the same support, regardless of where in the country they work.

“Försäkringskassan's requirement for [objective] examination findings in medical certificates has now been removed.” This is not true in practice, it’s still being used in some rejections of claims by pwME, and in some rejections of appeals in the administrative courts too.

 

[Kalliope]

Welcome to the 22nd Nordic Congress of General Practice in Stavanger, Norway

The 22nd Nordic Congress of General Practice in 2022 will have a special focus on future possibilities and challenges in general practice. The Nordic Congress is an important meeting place for clinicians, researchers and administrators, young and experienced, with a shared interest in primary care.

The Nordic Congress represents a unique opportunity for discussions and exchange of ideas and research, and for promoting general practice perspectives. The Pulpit Rock, a monumental icon for this region gives you a panoramic view and thrilling ideas for the future for doctors and patients.

Welcome to Stavanger on 21st - 23rd June 2022.

https://www.ncgp2022.no/


Includes sessions on;

Persistent Physical Symptoms in Primary Care – Understanding and Coping

PROGRAMME
1. Isabella Raasthøj: What characterizes individuals with BDS with regard to coping strategies?
2. Ingjerd Jøssang: How are patients’ own explanations for their medically unexplained symptoms thematized in GP consultations? A video analysis.
3. Marianne Rosendal: “My Symptoms” – assisting patients and GPs when symptoms persist.

Patients with medically unexplained physical symptoms (mups) – from theory to practice

Methods and timetable
0 – 20 min: Introduction. Summary of actual knowledge on the phenomenon MUPS
Erik L. Werner (professor in general practice, GP)
20 – 30 min: Plenary discussion
30 – 45 min: Metacognitive treatment as a method for common understanding; sparking salutogenesis throughout psychological empowerment
Ingunn Leeber (ph.d. candidate, GP)
45 – 60 min: Plenary discussion
60 – 75 min: ICIT (Individual Challenge Inventory Tool) - A systematic practical tool for exploring patients’ perceptions and potentials
Cathrine Abrahamsen (ph.d. candidate, GP)
75 – 90 min: Plenary discussion


Conclusion
In this proposal, we will summarize the actual scientific knowledge on theories on MUPS and provide two specific management initiatives on how the physician may meet the patients more structured and aiming to reduce the impact of the symptoms on the patients’ lives.

https://www.ncgp2022.no/detailed-program

Source:

Trisha Greenhalgh is one of the keynote speakers

Professor Wilkinson from the Mayo clinic will talk about how to establish trust in 10 minutes. The talk is titled "Almost as good as continuity: Establishing a trusting relationship in 10 minutes"

Quote:
We have developed a framework for a structured approach to categorizing and evaluating symptoms, which helps establish trusting relationships in the first minutes of a visit. Using irritable bowel syndrome as an example, we will outline the 9 essential steps for patients to begin to understand and accept the biopsychosocial aspects of chronic conditions, to be confident that the evaluation has been adequate to rule out other organic conditions while minimizing unnecessary testing, to accept the limitations of therapy and incremental improvements of symptoms, and to engage in effective self-management.

 

[Trish]

How to fool patients in 10 minutes. These people should be ashamed of themselves. Trust in medical care needs to be earned by genuine listening, proper investigation and effective support and treatment.

 

[mango]

The Swedish Social Insurance Agency (Försäkringskassan) has published a social insurance report on rejected sickness benefit claims (sjukpenning):

Rejected sickness cash benefit claims – A register study of sickness insurance decisions on initial claims and claims after day 180 in the rehabilitation chain.

More news on Radio Sweden (2 minutes, in Swedish)

Ny rapport: Oftare avslag för fibromyalgi och kroniskt trötthetssyndrom
https://sverigesradio.se/artikel/ny...for-fibromyalgi-och-kroniskt-trotthetssyndrom

New report: more frequent rejections for fibromyalgia and chronic fatigue syndrome

People with the diseases fibromyalgia and chronic fatigue syndrome, ME, are more often refused when applying for sickness benefit, compared to people with other diseases.

The Swedish Social Insurance Agency's new report analysed rejection decisions up to June last year and showed large regional differences, but also that the proportion of rejections varied between different diseases.

Marie-Louise Olsson has fibromyalgia herself and is chair of the Fibromyalgia Association: "I think it's terrible. I think and I have the experience that when you are at the beginning of your illness you cannot work."

 

[mango]

The Swedish Social Insurance Agency (Försäkringskassan) has published a social insurance report on rejected sickness benefit claims (sjukpenning):

Rejected sickness cash benefit claims – A register study of sickness insurance decisions on initial claims and claims after day 180 in the rehabilitation chain.

Repeatedly rejected benefit claims is such a massive problem for pwME in Sweden, I cannot stress this enough. So many of us, myself included, have had our lives completely destroyed by them, including severe permanent deterioration from having to over-exert ourselves by appealing to the administrative courts year after year after year... My heart goes out to all my pwME friends who are currently in the middle of it

If you haven't already, do check out Niklas Altermark's work, including his nonfiction book Avslagsmaskinen: byråkrati och avhumanisering i svensk sjukförsäkring ("The rejection machine: bureaucracy and dehumanisation in Swedish health insurance"). It was published in 2020. Altermark is an associate professor of welfare politics at Lund University, Sweden.

Altermark interviewed a large number of people for his book. About half of the pwME he interviewed described having suicidal thoughts, not because of the illness itself, but in relation to the social security system and the stress of rejected benefit claims.

Altermark announced earlier today that a follow-up article has been accepted for publication "What happens to sick people who are under so much pressure that they completely lose faith in the future?"

 

[rvallee]

Trisha Greenhalgh is one of the keynote speakers

Professor Wilkinson from the Mayo clinic will talk about how to establish trust in 10 minutes. The talk is titled "Almost as good as continuity: Establishing a trusting relationship in 10 minutes"

Quote:
We have developed a framework for a structured approach to categorizing and evaluating symptoms, which helps establish trusting relationships in the first minutes of a visit. Using irritable bowel syndrome as an example, we will outline the 9 essential steps for patients to begin to understand and accept the biopsychosocial aspects of chronic conditions, to be confident that the evaluation has been adequate to rule out other organic conditions while minimizing unnecessary testing, to accept the limitations of therapy and incremental improvements of symptoms, and to engage in effective self-management.

They cannot seem to understand that trust comes from truth, that there is no way for people to trust them if they lie to them about things they know. The whole reason people go see medical professionals is that they expect the truth, remove that and you break the premise of the entire system.

Physicians aren't supposed to establish trust because the credibility of medicine comes from it being informed by science, from being true, as best we can tell so far. It's science, self-correcting truth, that makes medicine credible. Lying to patients completely destroys not just trust in any one interaction but destroys the credibility of the entire profession. To put lying into a framework is still lying, I don't understand how they keep believing that it's the way the lies are told, not the actual lies.

And there they are telling themselves each other better ways to lie to people as a way to build trust, unable to understand why they aren't trusted precisely because they're lying and doing a very poor job of it. Amazing.

 

[cfsandmore]

Last week a friend told me the Mayo Clinic still uses the bps model.

 

[MittEremltage]

The Swedish Social Insurance Agency (Försäkringskassan) has published a social insurance report on rejected sickness benefit claims (sjukpenning):

I have written a comment to the report on my blog.

”Okay. I have tried to read and understand the Swedish Social Insurance Agency's new report on differences in refusal of sickness benefit, or at least parts of it. Link to the report can be found at the bottom of this post.

I was going to share some thoughts with you because there are both things that do not surprise me but also things I can not understand at all. What I have chosen to focus on are the sections that deal with rejection in relation to the main sick leave diagnosis.”

Here is a link to a Google translated version. I hope it works:

https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

[mango]

I have written a comment to the report on my blog.

”Okay. I have tried to read and understand the Swedish Social Insurance Agency's new report on differences in refusal of sickness benefit, or at least parts of it. Link to the report can be found at the bottom of this post.

I was going to share some thoughts with you because there are both things that do not surprise me but also things I can not understand at all. What I have chosen to focus on are the sections that deal with rejection in relation to the main sick leave diagnosis.”

Here is a link to a Google translated version. I hope it works:

https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

Excellent, as always! Thank you so much

 

[Kalliope]

The Swedish Parliament has supported a motion to ask the Government to investigate how a National Competence Centre for ME/CFS can be established, according to Sten Helmfrid on Twitter:

 

[mango]

The Swedish Parliament has supported a motion to ask the Government to investigate how a National Competence Centre for ME/CFS can be established,

The motion states:

A national centre of excellence for ME

The diagnostic criteria for ME are clear, but the lack of knowledge about the disease within the health care system often results in the patient group seeking recurrent care for their symptoms and ending up in lengthy processes in the care chain.

It is essential that the treatments and interventions used are based on evidence and research in the field.
The disease is complex and often leads to long-term sick leave. Many of those who fall ill also report difficulties in obtaining reimbursement from the Social Insurance Agency/Försäkringskassan, as there is no clear diagnosis model in line with the classification system used by the Social Insurance Agency/Försäkringskassan.

In light of this, the Center Party believes that the government should review how a national competence centre for ME can be established.

The report (betänkandet) by the Social Affairs Committee (Socialutskottet) states:

According to the committee, there is a lack of knowledge about the disease ME in the health sector. The committee considers that the government should investigate how a national centre of excellence for ME can be established. The Riksdag should endorse the committee's recommendation and inform the government accordingly. Motion 2021/22:3244, amendment 63, should be adopted.

The decision states:

A national competence centre for the disease ME

Decision: the House approved the committee's proposal
Decision taken by acclamation.

Proposal by the committee: The Riksdag endorses the committee's proposal for a national centre of excellence for ME and informs the government thereof.

Parliament thereby approves the motion.

The same report recommended that the Parliament should say 'no' to a centre of excellence for post-covid (motion 2021/22:3697 and motion 2021/22:3809), and the Parliament did vote against it.

Parliament should take no initiative regarding the proposal for a centre of excellence for post-covid. Motions 2021/22:3697 (M) amendment 6 and 2021/22:3809 (SD) amendment 9 should be rejected.

They also voted on a number of other motions regarding healthcare equality, which they supported only in part. Personally, I'm very disappointed that they didn't support the motion about improved (medical) home healthcare. It's an especially important issue for people with severe and very severe ME.

Home healthcare and other care should be equal
The Center Party believes that it is necessary to regulate by law that home healthcare is equal to other care. The only thing that should differentiate is the place where the care is provided. No one with home care should be denied care or care services that can be provided at home. Each municipality must have the capacity to provide the necessary care within home care. This means requirements for safe skills, medical equipment and knowledge of palliative care.

 

[Andy]

Google translated

Chief physician receives huge sums for online services for people with functional disorders

Chief physician Rikke Hinge Carlsson from the Center for Complex Symptoms at Bispebjerg and Frederiksberg Hospital receives DKK 5.7 million from the Trygfonden to develop an online offer for people with functional disorders and persistent symptoms.

https://medicinsketidsskrifter.dk/n...bud-til-mennesker-med-funktionel-lidelse.html

Source:

 

[Ravn]

Google translated

Chief physician receives huge sums for online services for people with functional disorders

Chief physician Rikke Hinge Carlsson from the Center for Complex Symptoms at Bispebjerg and Frederiksberg Hospital receives DKK 5.7 million from the Trygfonden to develop an online offer for people with functional disorders and persistent symptoms.

https://medicinsketidsskrifter.dk/n...bud-til-mennesker-med-funktionel-lidelse.html

Source:

More Google translation:

[...]For approx. 10-15 percent of the population becomes pain, dizziness, fatigue, stomach problems or other symptoms so prevalent and strong that they can be diagnosed with a functional disorder.

But help is on the way.

"We want to give these people some tools to manage and master their symptoms in everyday life," says Rikke Hinge Carlsson.

With the online offer, it will also be possible to meet others in the same situation via a common online platform. It is not a treatment offer, but a coping offer that can supplement treatment by your own doctor or the Center for Complex Symptoms, Rikke Hinge Carlsson states.

A functional disorder is almost always caused by a coincidence of several biological, psychological and social factors, which together create a particularly stressful condition.[...]

What google translates as "not a treatment offer, but a coping offer that can supplement treatment" is "ikke et behandlingstilbud, men et mestringstilbud der kan supplere behandling ved egen læge" in the original. Scandinavians will recognise this as the same sort of language used by LP proponents. While "not a treatment offer, but a coping offer that can supplement treatment" sounds reasonable enough at first glance I'm not confident it means what it seems to mean, never mind what 'treatment' it's supposed to supplement. At any rate DDK 5.7million is an awful lot of money for "a coping offer".

 

[rvallee]

So their argument is that 10-15% of the population can be diagnosed with that. Not that they are. That they can. So they make their client base from a hypothetical guesstimate, based on the flimsiest possible research where the conclusion is simply a default.

And they're pushing a treatment that, maybe, can help some. Generically, just "help" as a vague idea.

But it's not actually a treatment and they can't show any evidence that it makes any difference.

And they got money for this.

Frankly compared to this Theranos was honest and transparent. This fraud is completely over the top insane.

 

[mango]

Anns dotter är svårt sjuk i ME/CFS: ”En riktigt dålig dag kan hon inte prata”
https://amp.svt.se/nyheter/lokalt/v...art-sjuk-i-me-en-dalig-dag-kan-hon-inte-prata

Ann's daughter is severely ill with ME/CFS: "On a really bad day she can't talk"

Eleanor Musselbrook from Västerås was a healthy teenager who loved to sing and dreamed of moving abroad. But after a viral infection, her life was not the same. She fell ill with the neurological disease ME/CFS.

- It's a huge sadness," says Ann Musselbrook, mother of Eleanor.

Eleanor Musselbrook contracted glandular fever when she was 17 years old. It was the start of a disease hell. She was able to do less and less in the day and as time went on she got worse and worse. One day she couldn't get out of bed.

- It was so clear that something was wrong," says her mother Ann.

Since the glandular fever, her life has been marked by doctor's visits and question marks. But no one knew why Eleanor was sick. She was told by doctors that her condition was due to poor sleep, iron deficiency and mental illness.

- We knew that wasn't the case. We knew all along that she was mentally healthy. 'Just because she's a young girl, nobody took her seriously,' says Ann. [...]

 

[mango]

Tre frågor om: ME/CFS
https://www.svt.se/nyheter/lokalt/vastmanland/tre-fragor-om-me-cfs

Three questions about: ME/CFS

ME/CFS is classified as a neurological disease by the World Health Organization (WHO). It is a disease for which there is currently no cure.

- There are many questions surrounding the disease, says Per-David Alm, senior physician at the stroke and neurology section at Västmanland Hospital.

ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis is inflammation of the brain and spinal cord. CFS stands for chronic fatigue syndrome in Swedish. To be diagnosed, you must have had your symptoms for at least six months, according to 1177.

There are at least 10,000 Swedes suffering from ME/CFS, according to the National Association of ME Patients.

According to Björn Bragée, a specialist in pain management and researcher in ME/CFS at Karolinska Institutet, you can have moderate inflammation of the central nervous system and be sick with ME/CFS.

- It is no reason to exclude ME/CFS because you have inflammation in the nervous system, he says.

In the video clip, senior physician Per-David Alm explains the challenges of ME/CFS.

 

[mango]

(Not ME)

This thesis and the studies it is based on are getting headlines in Sweden today:

Cancerpatienter smyger med alternativbehandling
https://tt.omni.se/cancerpatienter-smyger-med-alternativbehandling/a/9KPz0d

Cancer patients use alternative treatments in secret

About one in four cancer patients use additional treatments not offered by health services. But that's not something they talk about. Around 60% choose not to discuss it at all with health professionals.

- Many patients sneak around with what they use because they feel that we in the health care system don't know the subject or aren't interested," says Kathrin Wode, oncologist and researcher at Umeå University. [...]

The most common ones that patients report using are vitamins, minerals, natural products and various types of dietary changes such as excluding certain foods. Others are acupuncture or meditation and yoga. [...]

But the fact that the doctor treating the patient doesn't know what they are taking is problematic. For example, some supplements or natural products can interact with other medicines that are part of the treatment. But there are also methods that research has shown to be effective. For example, yoga has been shown to improve quality of life for breast cancer patients and meditation can help with depressive symptoms and anxiety. But it's not the cancer itself that it's effective against.

- Healthcare providers can do a much better job of guiding patients about which cam treatments actually have proven effects. But knowledge about what they are and how to find information about them is quite poor. This contributes to patients feeling that the health care system does not listen. This can easily lead to a situation where patients choose not to tell. [...]

Although rare, there are patients who opt out of the treatment offered by the health service altogether and use other methods. The doctors interviewed often find this frustrating. [...]

In one study, 755 people with cancer were asked about cam use. One in four participants used cam alongside their cancer treatment. Only one in three had told their healthcare professionals about it.

Cam = complementary and alternative medicine.

An interview with the researcher about her work:

Vården sällan samtalspartner om komplementärmedicin för cancerpatienter
https://www.umu.se/nyheter/varden-s...ementarmedicin-for-cancerpatienter-_11610584/

 

[mango]

This is an older video of Swedish tennis player Robin Söderling talking about his mononucleosis/glandular fever and lingering symptoms in English. He got GF in 2011 at the age of 26, and this video is from 2014. He hadn't played tennis for years and he officially announced his retirement about a year after the video. [...]

I wonder how he is doing now.

Robin Söderling tar timeout: ”Hälsoskäl”
https://www.dn.se/sport/robin-soderling-tar-timeout-halsoskal/

Robin Söderling takes timeout: "Health reasons"

Robin Söderling, 37, takes a timeout as captain of the Swedish Davis Cup tennis team.

The reason is health reasons, says the Swedish Tennis Federation in a press release.

"Robin Söderling has previously been ill with exhaustion disorder. He has experienced recurring symptoms in 2022 and therefore chooses to take a timeout from the captaincy as a precautionary measure in order to prioritise his health and family," the federation writes.