Opinion piece about exhaustion syndrome in Swedish newspaper DN. DN Debatt. ”De utmattade måste få tillgång till rätt vård” https://www.dn.se/debatt/de-utmattade-maste-fa-tillgang-till-ratt-vard/ They have also recently published a scientific article. I started a forum thread here, and will add quotes from the opinion piece there too.
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.”
Psychologist and pwME Frøydis Lilledalen wrote a brilliant opinion piece that was published yesterday On becoming ill, being misbelieved and tone-policing. Stolthet og fordom – mitt møte med ME Pride and prejudice - my encounter with ME
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. https://twitter.com/user/status/1525416812388798464
Would be good to get more of an understanding of that. Norway seems a rare example of somewhere worse than the UK.
[An attempt to translate by a very brainfogged person who finds the writing in these emails quite incomprehensible. ] 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!»
So is Vogt being invited because he runs Recovery Norge? Would be interesting to know more about exactly what's happening here.
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.
The paper with signatures from the founding meeting of Recovery has also been posted online, and I'm sure we are all shocked that Live Landmark was one of the signatories
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.
Trial Lecture: Riad Hajdarevic https://www.med.uio.no/klinmed/engl...ents/trial-lectures/2022/hajdarevic-riad.html
Paywalled articles in a Swedish local paper: Fredrik älskar Cecilia – men hatar hennes sjukdom https://unt.se/bli-prenumerant/artikel/lwgvgo7r "Sjukvården har gjort ME-patienter sjukare" https://unt.se/bli-prenumerant/artikel/r42xq88l
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
Some posts have been moved to a new thread: Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)
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
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
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 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
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:
