News from Scandinavia

Prof Jonas Bergquist will be giving a zoom talk on Tuesday, 6 April. The talk will be approx 30 minutes long, in Swedish, and is free. It's part of UppTalk Weekly, an educational popular science seminar series, hosted by Uppsala University.

UppTalk Weekly: Hopp för patienter med ME - en av världens mest funktionsnedsättande sjukdomar
https://www.upptech.uu.se/kalendarium/evenemang/?eventId=59482
Google Translate said:
Hope for patients with ME - one of the world's most disabling diseases

ME is a chronic multisystem disease that affects the nervous system, immune system and energy production. Although ME has been diagnosed for over 50 years, it is still not known what causes the disease. Jonas Bergquist, professor of analytical chemistry, has started a research center in Uppsala where, among other things, the spinal fluid of ME patients is studied to get closer to solving the mystery behind the disease.
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Copied to a new thread and added to the calendar.
 
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Andy said:
Nothing, that I could see, on the COFFI website, https://www.coffi-international.com/
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I might have misunderstoof the wording, when reading it again it only says PAEDIA "heads an international consortium of post-infectious cohort studies (COFFI -- Collaborative of Fatigue Following Infection, www.coffi-collaborative.com)".

English: https://arbeidsplassen.nav.no/stillinger/stilling/921073e9-5ddc-4686-b945-c86ef6f337e6
Norwegian: https://arbeidsplassen.nav.no/stillinger/stilling/e9ee9fb6-6e71-41fa-8fbe-68715c063671
 
Midnattsol said:
I might have misunderstoof the wording, when reading it again it only says PAEDIA "heads an international consortium of post-infectious cohort studies (COFFI -- Collaborative of Fatigue Following Infection, www.coffi-collaborative.com)".

English: https://arbeidsplassen.nav.no/stillinger/stilling/921073e9-5ddc-4686-b945-c86ef6f337e6
Norwegian: https://arbeidsplassen.nav.no/stillinger/stilling/e9ee9fb6-6e71-41fa-8fbe-68715c063671
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Ahh, the Collaborative looks to be their new venture. Looks to be the same BPS acolytes in both.
 
Kalliope said:
Depressing editorial in the journal for the Norwegian Medical Association.
LP-coach Live Landmark used to be a regular contributor to this journal, and I wonder if the editorial might be part of an ongoing campaign to secure the planned LP-study.

The text is both in Norwegian and English version.

Title: Constrained research

Quote:
Research on controversial topics such as climate, gender, predator culling, nutrition and alternative medicine appears to be particularly susceptible. For many years now, researchers conducting both Norwegian and international research related to CFS/ME have been subjected to frequent and intense pressure, harassment and threats (6, 7). And it is not only the researchers themselves that are exposed to this treatment; funding providers are also attacked when the activists do not consider them to be aligned with their agenda (8). Demands have also been made for entire research communities to be closed down after conducting research or publishing guidelines that do not give the ‘right’ answers, as exemplified by the petition against the National Competence Service for CFS/ME (7.8). The patients’ association itself, the Norwegian ME Association, has refused to say whether its members are activists or are coordinating the submission of complaints (9). It also managed to bring the curtain down on a meeting in a public academic and research forum because they did not like the topic the therapists planned to discuss (10).
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There are now 5 responses to this editorial.

One in English by professor Diane O'Leary: A balanced view of animosity between researchers and the public

The rest are in Norwegian. One by an ME patient, two from the Norwegian ME Association, and the newest from professor emeritus Ola D. Saugstad.

Some google translated quotes from Saugstad:

- Brean makes a number of unsubstantiated allegations about an entire patient group. Such dehumanizing rhetoric becomes serious because the situation is the exact opposite.

- ME patients have made a unique effort to detect poor psychosomatic research, whether it is cognitive behavioral therapy, ligthning process or music therapy.

- It is time for ME patients to receive an apology from those who help to perpetuate an erroneous image of a brave group of patients, who have experienced a great deal of suffering.

Google translation of full comment: Constrained research? - ME in a new era
 
A small correction. As far as I know Diane O'leary is not a professor.
I'm sorry to say her reply completely misses the point. Objections by patients and scientists to BPS research are on scientific grounds - that the research is so badly done as to be meaningless, and the conclusions the researchers draw from it are distorted with false claims of efficacy.

The other responses quoted are better.
 
Trish said:
A small correction. As far as I know Diane O'leary is not a professor.
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This is how she's titled in the journal: Adjunct Full Professor in Philosophy, University of Maryland Global Campus

ETA: This is her twitter bio. Not sure what's the best way to title her..
Diane O'Leary is a philosopher and bioethicist, currently a Visiting Fellow at the Center for Philosophy of Science at University of Pittsburgh.
 
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ME-sjuka Katja Hill från Fjärås är sängliggande dygnet runt – får ingen sjukpenning
https://www.svt.se/nyheter/lokalt/h...liggande-dygnet-runt-far-ingen-sjukersattning

Google Translate, English
Google Translate said:
ME patient Katja Hill from Fjärås is in bed around the clock - does not receive sickness benefit

[...] To cope with everyday life, she has home care and receives help from her sister, with whom she lives. The new medical certificate states that she is “Very tired. Can not sit up for more than 5-10 minutes ", that she is "bedridden around the clock" and that she suffers from muscle cramps, pain and panic disorder.

However, the application for sickness benefit was rejected by the Swedish Social Insurance Agency, and the assessment is that she can handle a sedentary job.

- They say I should work. I do not understand how they think it could be possible, when I am so sick, she says.
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This article isn't about ME, but I think it's still very relevant.

It's kind of a long read, about how arguments based on ideology, moral and ethics are often disguised as value-neutral science. Technically this article is about the way some influential people in Sweden are talking about the Swedish pandemic strategy, but it's very much relevant to other "controversial" topics too, such as BPS for ME.

Wold i stället för vetenskap
https://kvartal.se/artiklar/wold-i-stallet-for-vetenskap/

(The title "Wold instead of science" is a play on words. "Wold" which a person's last name sounds like "våld", which means "violence" in Swedish.)

Google Translate, English
Google Translate said:
We have seen how certain voices in the public discourse contain an ideologically or ethically charged agenda, which is then sold as value-neutral science. However, this internal contradiction allows for a convenient debate technique, which haunts most of the answers to the criticism of Swedish pandemic management.

First, one can freely present ideological positions - but, as soon as criticism of these arises, one parries it with an alleged scientific neutrality. One can then claim that it's the others who suffer from ideological influence, which has made them immune to facts (or maybe they even have mental problems).

[Chief epidemiologist] Anders Tegnell, for example, expresses the latter in unambiguous diagnostic terms: it is “as if the world has gone crazy.” 21 Another favorite is that experts who have assessed the issue differently are “panicked” or “terrified” - terms with which [radio presenter and researcher] Emma Frans sadly often psychoanalyses her opponents. Frans speculates, for example, in her book 'Everyone is washing their hands' that researchers who criticize the Public Health Agency do so out of fear, or personal problems in their "life situation" .22
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(I couldn't find a good thread for this one. Please let the mods know if you know a better place for it.)
 
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This was a nice article in the journal of the Norwegian Nurses Organisation.

It's about an out-patient clinic for HIV and ME in a hospital in Kristiansand, Norway, where the patients themselves are part of the decision making concerning how things are run.

Sykepleien: Pasienter med hiv og ME styrer selv poliklinikken i Kristiansand
google translation: Patients with HIV and ME run the outpatient clinic in Kristiansand themselves

(One of the people in the project is called Fangen - this is translated by google as "the prisoner")

quotes:

- It is very rewarding work, and I have learned a lot. The work at the two outpatient clinics has many similarities. Many patients, both those with HIV and ME, perceive that they live with a stigmatized disease and may talk to only a few or no one else about their diagnosis. It can be exhausting and help to increase self-stigma, she says.

....

- Are there any pitfalls with user control?

- If you are not aware of the division of roles between the users and the health personnel, it can be challenging. Healthcare professionals must also be clear about what we want feedback from users, and listen to the evaluation the users bring. We must have good communication and dialogue with health professionals and users. It is also important that the offer is anchored in the management, says Aas.

- Not more time consuming, or that you lose power as a professional?

- An establishment process is always more time-consuming, until you can distribute the tasks and clarify the division of roles. After we got an experience consultant and distributed tasks, I experience having a little more time for patient-centered work. I have never experienced a loss of power as a professional, I have rather become more aware of my role as a nurse and learned to ask patients other questions.
 
MillionsMissing Denmark writes on their Facebook page that Dr Per Julin, who is the head of Stora Sköndal's ME clinic in Sweden, was invited to an online meeting 4 March 2021 with the Danish parliament's healthcare committee (or sub-committee? "Folketinget's Sundhedsudvalg"), to talk about ME.

Julin has now also sent the Danish Health Authority a letter:
https://me-foreningen.dk/wp-content/uploads/2021/04/NyRapport-Per-Julin-kopi.pdf

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Some background info here:
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Not ME specific, but this looks like good news for a lot of people including pwME :)

Funktionsrätt (the Swedish Disability Rights Federation) announced a couple of days ago that their plan to set up a disability rights bureau is moving forward, thanks to a generous grant.
Google Translate said:
The need for an agency that people with disabilities can turn to is enormous. It is becoming increasingly difficult for people with disabilities to have their rights realized and many have to fight on their own against government lawyers despite disabilities and illnesses ", comments Nicklas Mårtensson, Chief of Staff for the Swedish Disability Rights Federation.

People with disabilities should be able to turn to the disability rights bureau to talk to someone who listens and who can explain what rights apply, who is responsible and what steps can be taken to demand their rights. The disability rights bureau will offer counseling to strengthen individuals so that they can exercise their rights. The disability rights bureau will gather knowledge from rights holders who face disabilities and contribute to structural change in society. “Our vision is for it to become a strong nationwide agency where people with disabilities can turn to for individual support."
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https://www.pressmachine.se/pressrelease/view/funktionsrattsbyran-blir-verklighet-31163
 
Good news. Disabled and chronically ill people seriously need a union, or something like it. That it isn't already a thing is such a failure. Because of geographic distribution, it may be the largest constituency with zero political representation (other than children, I guess). There are so many of us and yet it is impossible for politicians to even bother thinking about us as we have no impact, we are too spread out.

But this can't be done through grassroots alone, precisely because of the lack of political influence. The system has to accept it, medicine has to support and defend it, both things that have yet to happen. But it would be a massive change, certainly far more beneficial than all the BPS ideology has wraught, or even the very best it could potentially achieve if it weren't intellectually and morally bankrupt in its execution.
 
Andy said:
UK only, I appreciate, but there are these options, https://disabilityunion.co.uk, which is something relatively new, and the established union, Unite, seems to have a specific section for disabled folks, https://www.unitetheunion.org/what-we-do/equalities/sectors/disabled-members/
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Problem is political influence is directly related to money and mobilization. Disabled people are by definition poor and, well, poorly mobile. It can't be strictly grassroots, we don't have the resources or capacity for it. It would have to be half and half, grassroots but also have a sort of official status with public funding that overcomes the inherent limitations that are unique to our circumstances. But to achieve that we'd need... money and mobilization. Good old Catch-22.

Nothing like this exists so it would be a massive project, it's a massive shift from the normal way of doing things: if you want something done, do it. And it would take medicine to play a political role, which it does through inaction but doesn't want to take this active role, or doesn't see the need.

Sure would be a game-changer, though. I don't see how it could happen, but this is what is needed if the human rights of disabled and chronically ill people are ever to be respected.
 
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