News from Scandinavia

mango said:
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.
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Ah. Thank you for this.

I found this part of the article worrying together with the part where his talking about that he overexert himself as soon as he gets a little bit better thinking that he maby is back to normal:

”- You can get ME in many different ways and since you can get it in many different ways, there are also many different solutions to get out of it. That's what makes it so tricky. You have to constantly test, test, and test. You always have a new diet or a new dietary supplement and we who have ME try to share with each other what works and what does not work for some.”
 
What is this about?

Uh... no idea why it's marked as sensitive content. It's just images of text that seem to be emails between Henrik Vogt and, I think, the medical authorities on the issue of who runs RN and how it relates to LP.

 
rvallee said:
What is this about?
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[An attempt to translate by a very brainfogged person who finds the writing in these emails quite incomprehensible. :oops:]


Email from FHI (national institute of public health) to Henrik Vogt.

FHI has established a national knowledge program for covid-19, as comissioned by the ministry of health and care services. Henrik Vogt is being invited to join a work group/comittee for the program. [I’m not sure how to translate ‘faggruppe’.]




Email from Recovery Norge to Anne Grethe Erlandsen, regarding a meeting between Recovery Norge and Erlandsen

«Thank you for an inspiring meeting regarding «post-covid syndrome» last Thursday. We were happy to bring the perspective of Recovery Norge into the evaluations that is being done with this topic. Your broad involvement profesionally [‘fra fagsiden’?] left us wondering if we could be useful for more than just putting forward experiences from individuals who stand as a contrast to the gloomy prophecies of the future that create the biggest headlines. Paul Gardner had a proposal for prevention when you challenged him: “Preemptive the narrative of this being a thing needing a medical solution».

There probably exist many alternative measures, and measures that can be combined. Maybe the guidelines that will be ready in May will take early actions on the challenge of communication that this primarly must be viewed as.

If one accepts the assumption that the battle of the power to define based on a biomedical vs a holistic view («body & mind» as Pauls Garner used as a term) will be similiar to what we know from the norwegian CFS/ME-context, the non-biomedical understanding will have difficult circumstances.

We do not have concrete proposals for angle of attack. But we might have resources and possibilities to create a collaboration with leading resourceful people that you met on the 18th of March, whom together could contribute to good measures early enough to hinder a belief in the hopeless. The common denominator in the contributions of Paul Garner, Minja Hjorth and Marthe Jürgensen in the meeting is the turning point the ones affected experience in the face of a credible hope of improvement.

Recovery Norge wishes to offer our experiences and resources where the Ministry of Health and Care Services would like our contribution!»
 
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I'm not sure about the timeline, but Recovery has been in contact with the Ministery of Health and also out National Institute of Public Health previously sand if that ended with everyone happy and an agreement to work togther should something like this start is (unfortunately) not surprising given NIPH's views on the matter.

If it wasn't so serious I would find it funny how Vogt & co keeps smearing the ME Association and pwME who doesn't get hope from their work, while calling themselves the victims... his letter of explanation to the national ethic's committee about the complaints made agaist the LP study contained claims about international campaigns agains their view and the anti-science ME-activists. I hope NEM reacts to that, claims upon claims of malicious intent and no proof, while the concerns raised by the ME Association (and others) back up their claims with sources.
 
Wow, OK. Thank you!

I'm seeing similar things back and forth lately and it seemed relevant, all about RN's conflicts of interests. It's frankly a bizarre letter, talking about prophecies (it's been 2 years, this isn't the distant future) and pre-empting... something that's been happening for 2 years.

Seriously a major investigation into Norwegian medical authorities seems to be in order. They are dissembling into dysfunction well beyond us, as if it wasn't bad enough.
 
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Paywalled articles in a Swedish local paper:

Fredrik älskar Cecilia – men hatar hennes sjukdom
https://unt.se/bli-prenumerant/artikel/lwgvgo7r
Auto-translate said:
Fredrik loves Cecilia - but hates her illness

Cecilia Blomqvist was 19 years old when she was diagnosed with ME, chronic fatigue syndrome. She has felt deep guilt many times that she made Fredrik marry a sick person.
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"Sjukvården har gjort ME-patienter sjukare"
https://unt.se/bli-prenumerant/artikel/r42xq88l
Auto-translate said:
"The healthcare system has made ME patients sicker"

Jonas Bergqvist is a professor of analytical chemistry and neurochemistry. He has set up a research centre in Uppsala to solve the riddle behind ME.
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Paywalled article in a Swedish local paper:

Maria, 43, lider av svåra sjukdomen: ”Som om någon satt dimmer på livet”
https://www.smt.se/2022-05-23/maria-43-lider-av-svara-sjukdomen-som-om-nagon-satt-dimmer-pa-livet
Auto-translate said:
Maria, 43, suffers from severe illness: "As if someone put a dimmer on life"

She was 38 when she got an electric wheelchair. The disease makes a social life outside the apartment almost impossible. Grocery shopping can take a whole day, and Mia can be forced to sit in her car for an hour before she can get into her apartment with her grocery bags. She doesn't always have enough energy left to pack the food in the fridge. But it's rare to meet a person as positive as Maria "Mia" Skoglund.

- Sure, I can be bitter and grumpy some days too. But it's more fun to laugh. It's so much more fun.
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rvallee said:
What is this about?

Uh... no idea why it's marked as sensitive content. It's just images of text that seem to be emails between Henrik Vogt and, I think, the medical authorities on the issue of who runs RN and how it relates to LP.

Click to expand...


This is
Long-term Effects of COVID-19 in Adolescents (Project LoTECA)
https://clinicaltrials.gov/ct2/show/NCT04686734

and Recovery Norway (Recovery Nor) is the "Patient" organization/association in the project..
 
Article in a Swedish local paper:

Forskare: Postcovid och ME kan vara samma sjukdom
https://unt.se/bli-prenumerant/artikel/rx5v28kj
Auto-translate said:
Researcher: postcovid and ME may be the same disease

The symptoms of postcovid and ME are similar. Researchers are now investigating the similarities in order to find a cure for the diseases.

The more researchers find out about postcovid, the more they have been able to see that there are significant similarities with the neurological disease ME.

Concerns reported by both groups include loss of fitness, lowered energy levels and lack of energy, further deterioration with both mental and physical exertion, and neurocognitive disturbances such as concentration problems, headaches and brain fog.

Jonas Bergquist, a professor of analytical chemistry and neurochemistry, is studying both post-covid and ME patients in his research at the Biomedical Centre, Uppsala University, in search of better understanding and treatment for both diseases.

- There are major similarities around fatigue, but one difference we can see is that ME patients typically have no known lasting lung impact, unlike a larger proportion of post-covid patients.

Jonas Bergqvist, professor of analytical chemistry and neurochemistry at Uppsala University, is conducting research on both ME patients and post-covid patients to find a cure for both diseases.

Jonas Bergquist and his colleagues in occupational and environmental medicine and outpatient clinics carry out a large number of tests, including lung function, fitness tests, and cognitive tests that test patients' brain function.

One of the tests they do is to have patients walk at a brisk pace for six minutes repeatedly to get a measure of how far they are able to walk while looking at blood pressure, heart rate and oxygenation.

- We also collect blood samples before and after and measure how well the cells are able to produce energy and the body is able to recover.

Researchers then follow up with more in-depth analysis of small molecules and proteins in both blood and isolated cells, trying to identify what's working and not working in the patient.

- If we find similar disturbances in cell function in both post-covid and ME patients, it could point us in the right direction as we try to find treatments for these two groups.

According to Jonas Bergquist, ME research has so far been severely underfunded, while there is a greater propensity to fund covid research.

- ME research can benefit from new findings that come out of post-covid research, and covid research can benefit from everything we already know from ME research.

Are post-covid and ME the same disease?

- Some researchers claim so, but I think we need more information about postcovid to draw that conclusion. What we can say is that some of those now suffering from post-covid will probably end up in the ME patient group.
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An awful story from Norway.

The Norwegian Labour and Welfare Administration required ME sufferer Jane to undergo a gastric sleeve operation before she could get welfare. She lost 30 kg, but is no better from her ME. They then said she hadn't had sufficient CBT. Jane has been referred to therapists several times, but the referrals have been denied as the therapists said there was no need for this treatment.

The article mentions that US and UK no longer recommend treatments as CBT, GET and rehabilitation for ME. It also says that NICE since 2021 advices against such treatments, but that CBT may be used to cope with being ill. It will not make people able to return to work.

A spokesperson from the Labour and Welfare Administration says that it doesn't matter for them that US and UK no longer recommend CBT. She points to the Norwegian guideline for ME where CBT and GET are mentioned as possible treatments.

Dagsavisen: Nav mente ME-syke Jane (45) burde slanke seg: - Jeg er 30 kilo lettere, men akkurat like syk
google translation: The Labour and Welfare Administration said ME sufferer Jane (45) should lose weight: - I am 30 kilos lighter, but just as sick
 
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Paywalled articles in a Swedish local paper:

Diagnosen fick Anna, 33, att ge upp sina drömmar – nu har den största besannats
https://www.falukuriren.se/2022-05-...pp-sina-drommar--nu-har-den-storsta-besannats
Auto-translate said:
The diagnosis made Anna, 33, give up on her dreams - now the biggest one has come true

After years of living with unexplained pain, fatigue and shameful feelings of being lazy and poorly, Anna Ljungberg was finally diagnosed with ME.

And while the grief of everything that never was remains, she has now learned to cope with the disease and its limitations.

Recently, she also fulfilled the one dream she refused to let go of all along: becoming a mother.

- It's uncertain and scary as hell. But so worth it," she says.
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Christina kämpar för sjukdomen som inte syns: ”Många ger upp hoppet”
https://www.falukuriren.se/2022-05-...-sjukdomen-som-inte-syns-manga-ger-upp-hoppet
Auto-translate said:
Christina fights the invisible disease: 'Many give up hope'

In 2017, after ten years of symptoms, Christina Ljungberg's daughter Anna finally received the news that she has ME - a diagnosis that has come to affect the whole family.

Today, Christina is fighting to help both sufferers and other relatives - including by organising events to raise awareness of the "invisible" disease.

- It's a disease where many relatives and sufferers can give up hope," she says.

Christina Ljungberg remembers the relief when, after ten years of uncertainty, her daughter Anna was finally diagnosed with ME - a chronic neurological disease that affects the nervous system, hormones and the immune system.

- When she was diagnosed, it was somehow an explanation for all these strange symptoms she had had all these years, so it was quite nice, she says.
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Kalliope said:
An awful story from Norway.

The Norwegian Labour and Welfare Administration required ME sufferer Jane to undergo a gastric sleeve operation before she could get welfare. She lost 30 kg, but is no better from her ME. They then said she hadn't had sufficient CBT. Jane has been referred to therapists several times, but the referrals have been denied as the therapists said there was no need for this treatment.

The article mentions that US and UK no longer recommend treatments as CBT, GET and rehabilitation for ME. It also says that NICE since 2021 advices against such treatments, but that CBT may be used to cope with being ill. It will not make people able to return to work.

A spokesperson from the Labour and Welfare Administration says that it doesn't matter for them that US and UK no longer recommend CBT. She points to the Norwegian guideline for ME where CBT and GET are mentioned as possible treatments.

Dagsavisen: Nav mente ME-syke Jane (45) burde slanke seg: - Jeg er 30 kilo lettere, men akkurat like syk
google translation: The Labour and Welfare Administration said ME sufferer Jane (45) should lose weight: - I am 30 kilos lighter, but just as sick
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I guess it makes sense to people who believe in cultural illness that science is also cultural and works differently across borders. Especially for people who don't understand what science is about.

But to require such a major surgery and then not even care that it changes nothing is just vile. What a rotten system they built there.
 
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:
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