News from Scandinavia

Good grief... Literally no one thinks physicians are infallible, it's painfully obvious how limited modern medicine remains. Well, clearly no one outside of medicine.

We literally need this, except not for emperors:

https://en.wikipedia.org/wiki/Auriga_(slave)

In ancient Rome, the auriga was a slave with gladiator status, whose duty it was to drive a biga, the light vehicle powered by two horses, to transport some important Romans, mainly duces (military commanders). An auriga was a sort of "chauffeur" for important men and was carefully selected from among trustworthy slaves only.

It has been supposed also that this name was given to the slave who held a laurel crown, during Roman Triumphs, over the head of the dux, standing at his back but continuously whispering in his ears "Memento Mori" ("remember you are mortal") to prevent the celebrated commander from losing his sense of proportion in the excesses of the celebrations.​
 
Jonas Bergquist on Swedish TV earlier today:

Ny forskning: Snart kan det finnas ett test som visar om du har ME
https://www.tv4.se/artikel/6srgEVVz...an-det-finnas-ett-test-som-visar-om-du-har-me
Auto-translate said:
New research: there may soon be a test to see if you have ME

Interesting findings - "Very good things happening"

Let's talk about a topic we've been following for a long time: the disease ME and the research around it.

Because an ongoing study by ME researcher Jonas Bergquist has already shown interesting findings and could be one step closer to finding the biomarkers for the disease that the scientific community is looking for.

- There are a lot of good things happening," he says.

Jonas Bergquist, director of the ME/CFS Research Centre in Uppsala, talks about the progress in the video player above.
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Post/thread about the segment on Malou Efter Tio's Facebook page.

ETA: Forum thread about the study:
https://www.s4me.info/threads/sweden-me-cfs-lactate-glucose-and-hypoxanthine.21615/
 
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Jaybee00 said:
2. Not sure why he states there is auto-immunity involved whereas @Jonathan Edwards has previously mentioned that there is no evidence for this claim.
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It's not just Berquist that does this, Fluge/Mella/Tronstad still talks about autoimmunity as a potential cause of ME/CFS, I think they went through their reasoning in a paper discussed on here a while ago (sorry don't remember the title).
 
OMF has scheduled a YouTube video to premiere on May 3, 2022.

"Dr. Jonas Bergquist updates on ME/CFS Research Progress! May Momentum Tuesdays 2022

Jonas Bergquist, MD, PhD, is OMF's Chief Medical Officer & Director of the Uppsala ME/CFS Collaborative Research Center (CRC). Today he shares updates from Uppsala CRC's #LongCOVID research study, findings from the cerebral spinal fluid of ME/CFS patients, and more."

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Copied to this thread:
ME researcher Jonas Bergquist - interviews, talks
 
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Opinion piece (in English). ME is not mentioned.

What my burnout taught me about Sweden’s exhaustion epidemic

“Hitting the wall” is a well-known and widespread phenomenon in Sweden, where thousands are forced to take long-term sick leave because of clinical exhaustion. David Crouch, who hit the wall himself, examines this uniquely Swedish condition.

https://www.thelocal.se/20220429/in-i-vaggen-whats-behind-swedens-growing-burnout-problem/
The issue is [...] unusually Swedish. Sweden has a problem with burnout and a unique approach to understanding and treating it.

This country is going through a minor epidemic of what in Sweden is termed “exhaustion syndrome” (utmattningsssyndrom), known clinically in English as exhaustion disorder (ED). No other medical condition has seen such a big increase in Sweden over the past decade.

Yet 20 years ago there was no such diagnosis, and it does not even exist abroad. So what is going on?
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Honestly, it would never be possible to invent this in a story, it's just too ridiculous to make it up. Reminds me way too much of the people who made the Earth the center of the universe. How they can think this is uniquely Swedish, I guess it must because of the underlying beliefs that this is cultural.

Except this time there isn't even a coherent belief system, just as vague set of ideas and disjointed beliefs, way more folklore than powerful church. It's hard to feel optimistic for the survival of our species given how badly we faceplant against simple problems.
 
Esther12 said:
Has anyone got access to a translated version of this story? Seems you need to log in somehow for it.

NAVs ME-hjelp skaper debatt

https://www.dagbladet.no/tema/navs-me-hjelp-skaper-debatt/75932875
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It's an article about the research project "Tjenesten og MEg" who says ME patients aren't taken seriously by those who are supposed to help them and that lack of knowledge results into "help" that only makes matters worse.

Research director at the Norwegian Institute for Public Health Signe Flottorp says it's documented that cognitive therapy has effect and that there are no controlled studies showing it's harmful. Same with adapted exercise therapy. We must have a Norwegian Labour and Welfare Administration that makes sure to test whether the patient can get back to work before he/she gets benefits. She understands it can be demanding for the patient, but on the other hand getting benefits can't be a self-service.

Ingrid Helland, leader of the National Competence Service for ME/CFS says the national ME-guideline only suggests graded exercise, cognitive therapy and coping courses, it was never meant for the Norwegian Labour and Welfare Administration to take it literally.
 
Kalliope said:
It's an article about the research project "Tjenesten og MEg" who says ME patients aren't taken seriously by those who are supposed to help them and that lack of knowledge results into "help" that only makes matters worse.

Research director at the Norwegian Institute for Public Health Signe Flottorp says it's documented that cognitive therapy has effect and that there are no controlled studies showing it's harmful. Same with adapted exercise therapy. We must have a Norwegian Labour and Welfare Administration that makes sure to test whether the patient can get back to work before he/she gets benefits. She understands it can be demanding for the patient, but on the other hand getting benefits can't be a self-service.

Ingrid Helland, leader of the National Competence Service for ME/CFS says the national ME-guideline only suggests graded exercise, cognitive therapy and coping courses, it was never meant for the Norwegian Labour and Welfare Administration to take it literally.
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Thanks for that. If there's a copy you could pm, that would be great.
 
Some of the bits from the google translated article I found most of interest:

https://www.dagbladet.no/tema/navs-me-hjelp-skaper-debatt/75932875


- Many patients do not perceive that they are taken seriously in their meeting with the helpers. Lack of knowledge and competence in the service apparatus about the disease's peculiar symptoms and consequences leads to measures being taken that may work against its purpose, says Arne Grønningsæter, who is one of the researchers behind the study.
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- The essence is that the ME patients to a small extent experience that public measures are helpful, and that several measures that they feel pressured to participate in also appear to be harmful, says Grønningsæter.
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In order to apply for disability benefits, the National Insurance Act requires that the person applying has undergone so-called "appropriate treatment to improve earning capacity".

- Staying at a rehabilitation institution is one of several measures in the assessment and treatment plan that the GP should consider, but the measures must be adapted to the individual's functional level. Some patients will be too ill to benefit from the measures. The attending physician must assess whether any measures will lead to permanent deterioration.

It must also be clear from the doctor's assessment why a measure should not be tried, says section manager in NAV Bente Thori-Aamot.

Thori-Aamot emphasizes that the regulations for disability benefits are the same for ME patients and people with other diseases.

- The regulations require that documentation, observation time and function descriptions will be greater in cases with unclear disease pictures without a known cause. In such cases, there may be few objective findings on clinical examination. CFS / ME is an exclusion diagnosis which means that the disease must be investigated and assessed broadly, says Thori-Aamot.

The law sets several requirements for being granted disability benefits.

- As a general rule, the user must have had their ability to earn income permanently reduced by at least 50 per cent as a result of illness or injury. The disease must be the main reason why the earning capacity is reduced and appropriate treatment and work-oriented measures must be implemented, says Thori-Aamot.

- The social mission of NAV is to contribute to social and economic security, but also to promote the transition to work and activity. It is thus a right for the individual to receive help to get into activity and work, if possible.
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Research director Signe Flottorp at the National Institute of Public Health believes it is important that patients feel seen and understood.

- Some ME patients are so ill that it is completely unrealistic for them to be able to enter working life, but declaring someone permanently disabled has major consequences for the individual and for society. We therefore absolutely have to have a NAV that makes sure to try and assess whether the individual can become fit for work. That it can be demanding for an ME patient to stand in is understandable, but getting disability benefits can not be self-service either.

- It has been documented a long time ago that cognitive therapy has an effect and there are no controlled studies that indicate that it is harmful. The same applies to customized training treatment. Although not everyone has the effect of such measures, it is important and correct that ME patients are offered rehabilitation before being granted disability benefits, says Flottorp. Many ME patients have a very complex disease picture and reduced quality of life.

- The patient's symptoms are real, not imagination.

Health personnel and NAV caseworkers must meet patients with empathy, but they have to consider each individual application carefully and ensure that they have really tried to get to work, says Flottorp.
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The head of the National Competence Service for CFS / ME, Ingrid B. Helland, is not surprised by the researchers' findings.

- We know that many ME patients have bad experience with the way NAV sets up work trials, and that it is not always adapted. For an ME patient, for example, having a work trial in a noisy kindergarten is not very appropriate, says Helland.

- We see that some patients are too ill to make use of rehabilitation stays, but it is also good help for many, says Helland. In 2018, a national professional network for long-term exhaustion for unclear reasons was established. The network consists of representatives from all regional hospitals, from GPs and from the ME association. The network has been in dialogue with NAV about the conditions for being granted disability benefits as an ME patient, and among other things requested that the regulations to the National Insurance Act chapter 12, which has a separate section on CFS / ME, be changed.

- After the period of work clearance allowance has expired, many patients experience being referred to social assistance when they receive a discount on disability benefits. The refusal is often based on the patient not having undergone treatment trials, says Helland, who heads the network. The refusal is made with reference to the National guide for CFS / ME published by the Norwegian Directorate of Health. This guide states that it must be documented that the patient has «undergone medical examination and treatment, such as graded training, cognitive therapy and coping courses.

- We see that the examples given in the guide are taken literally by caseworkers in NAV, and not as they are intended, as examples. Today's circular states that a number of measures should be considered, but it does not state that these must necessarily be tried before the patient is granted disability benefits. We believe that a number of caseworkers in NAV misunderstand this, says Helland.

She believes it is important, as it is also stated in the circular, that an assessment is made in advance whether any measures will lead to deterioration. It is nevertheless crucial that the patient has received qualified and targeted follow-up, adapted to the individual's endurance. In a letter to NAV, the professional network asked NAV to change the regulations to "there is no basis for requiring the patient to have undergone a specified treatment before disability benefits are granted".

- We did not get a breakthrough for that. I understand that NAV and the health service have different roles in this, and that NAV must also manage the community's resources, says Helland. She is nevertheless concerned about the many ME patients who have challenges with NAV.
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Another article about pwME Niklas Malmqvist in Sweden.

Niklas om sin ME: Det värsta är att tvingas vara självisk
https://www.wellness.se/halsa/sjukd...in-me-det-varsta-ar-att-tvingas-vara-sjalvisk

Do be aware that Niklas and his influencer partner Vanja Wikström are currently also actively marketing their NTF business. The attention and media exposure they are getting through the articles about Niklas's ME is probably very important for their business, so that might have an impact on what they say and where they appear etc.

Also worth keeping in mind is that, according to the article linked above, Niklas is a patient of two private ME clinics, one of which is very expensive.

An recent article about their business:

Vanja Wikström satsar allt på NFT: “Vi sätter hela vårt rykte, vår personlighet och yrkesmässighet på spel”
https://www.breakit.se/artikel/3281...t-rykte-personligt-och-yrkesmassighet-pa-spel
 
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