News from Scandinavia

Kalliope said:
A letter to the editor from head of department at the children and adolescent's ward at Akershus university hospital. I believe he is prof. Wyller's boss?

He says they've had a productive research environment for CFS led by prof. Wyller, but that the funding to this work has been reduced lately. He blames ME patients for this.

He refers to the Reuter's article and the criticism towards the PACE trial to show how much harassment there is from patients. He also refers to the petition against the National competence service and the research council's allocation to user involved ME research to show how much power the patients have gotten. Prof. Wyller's research project on children and Lightning Process didn't receive funding from the research council's allocation. The funding for Norway's most published ME research milieu is decreasing. Instead research milieus working from a specific theory that ME has physiological causes have received substantial amounts.

Erik Borge Skei - Pasientgrupper sjikanerer ME-forskere og utøver press for å påvirke hvem som får forskningsmidler
google translation: Patient groups harass ME researchers and exert pressure to influence who gets research funding
Click to expand...

So many weak pieces coming out. This promotion of the Lightning Process by some confused members of the 'pro-science' crowd, while they fail to engage with any of the specific concerns raised, seems very odd.
 
Esther12 said:
So many weak pieces coming out. This promotion of the Lightning Process by some confused members of the 'pro-science' crowd, while they fail to engage with any of the specific concerns raised, seems very odd.
Click to expand...

In a perverse way the foolish support of LP by people who call themselves following science pleases me.

There is no way to support this LP notion with real science and people are going to notice (I'm hoping sooner rather than later) and it will really put paid to more of the nonsense ideas that are pretenders to science because this particular support for LP cannot withstand even modest scrutiny.

I think continuing to have in the public eye some of the problems highlighted by people like John Ioannidis and others to keep discussion of the perils of bad science is a good strategy (one of many).
 
The article is sort of the cousin of the Reuter piece, BPS-people campaigning all over. Desperation and the usual blame vexatious patients and organizations.

Agree when it comes to LP and Wyller coming back to this. It’s just weird promoting LP, and really insane blaming patients for not wanting this project when resources are really scarce.

A lot more troubling, is the fact that these people seem to have no idea or interest of the many very problematic ethical questions if doing such a study on correctly diagnosed ME-patients. That said, it is very reassuring that such study would probably never pass a ethical committee prior to a study. So that’s good. In theory it would be good to have an LP-study just to sort this insanity out once and for all. But it is very scary that people educated in medicine throws valuable resources in the bin with all this pseudoscience and rambling with LP.
 
Hi @Peter

For clarity and transparency -- do you know who the governing body is that would oversee ethics of any prospective LP trial? Do you have a link?

I always like to keep track of the various players.
 
The question about governing bodies re: misconduct in research is a bit of a hot topic in Sweden at the moment, as well as the need for better protection for whistleblowers.

Google Translate said:
On February 28, 2019, the Government decided on the new bill to promote good practice and deal with misconduct in research. The bill proposes a new national system for managing suspicions of misconduct in research. Among other things, it is proposed that an independent government board should investigate suspected misconduct in research instead of the universities and other research principals investigating themselves, as in today's system. The research principals must be obliged to report suspicions of misconduct in research to the new board. Individuals also have the opportunity to report suspected misconduct directly to the Board and the Board will be able to initiate investigations on their own initiative, as a result of, for example, tips from an anonymous notifier or information in the media. These possibilities mean that there will be a kind of control function over that the research principals do not make an incorrect assessment of whether a case should be examined by the committee.

It is also proposed in the bill that it should be regulated by law that a researcher is responsible for following good research practice in his research and that the research principal has the overall responsibility for ensuring that research is carried out in accordance with good research practice.
Click to expand...
https://www.riksdagen.se/sv/dokumen...dd-for-visselblasare-inom-forskningen_H612361

Google Translate said:
At present, each university and university college is investigating suspicious research fraud themselves and the decisions are made by the respective management without giving the individual the possibility of appealing.[...]The Government not only points to the individual's opportunity for a fair trial, but also highlights the risks that universities and colleges are covering up misconduct. Recommendations by the expert group on misconduct in research are not binding for the universities in the current system, which means that in many cases they have made their own decisions that have gone against the expert group's recommendations.

The government warns that the university and university colleges' protection of their own brand and reputations can "stand in opposition to the impartiality they must maintain in their investigations of suspected misconduct. Confidence in the research principals' investigations can thus be low, even if the investigations are carried out in a completely factually correct manner”.
Click to expand...
https://www.lag-avtal.se/nyhetsarkiv/ny-namnd-mot-forskningsfusk-6950105

https://liu.se/nyhet/regeringen-vill-inratta-myndighet-for-utredningar-av-forskningsfusk
 
Last edited:
The Norwegian ME Association, Rogaland County, has worked on a school project on adapted teaching for pupils with ME.
The project is now finished and is soon ready to be presented at schools. As part of the project, four short animations have been made. One of them is publicly available, a film about 16 year old Lisa (with subtitles in several languages).

For the next few days one of the other films are available to see as well. This is about ME and friends. It's in Norwegian and does not have any subtitles, but I hope people in Denmark and Sweden will be able to understand it.

Here is link to the film. Password is "venn".

Duration: 2 minutes.
 
Kalliope said:
A letter to the editor from head of department at the children and adolescent's ward at Akershus university hospital. I believe he is prof. Wyller's boss?

He says they've had a productive research environment for CFS led by prof. Wyller, but that the funding to this work has been reduced lately. He blames ME patients for this.

He refers to the Reuter's article and the criticism towards the PACE trial to show how much harassment there is from patients. He also refers to the petition against the National competence service and the research council's allocation to user involved ME research to show how much power the patients have gotten. Prof. Wyller's research project on children and Lightning Process didn't receive funding from the research council's allocation. The funding for Norway's most published ME research milieu is decreasing. Instead research milieus working from a specific theory that ME has physiological causes have received substantial amounts.

Erik Borge Skei - Pasientgrupper sjikanerer ME-forskere og utøver press for å påvirke hvem som får forskningsmidler
google translation: Patient groups harass ME researchers and exert pressure to influence who gets research funding
Click to expand...
Reply from the Research Council of Norway.

Pasienter kan styrke forskningen
google translation: Patients can strengthen research

There is a great deal of disagreement among both ME-patients and researchers about cause and treatment. But too much user involvement is not the problem. The pilot project BEHOV-ME is also not a symptom of the Research Council being pressed by patient organizations. On the contrary, it was an attempt to create more collaboration between those who research and those who are researched.

They also bring up the complaint of Wyller not receiving funds for his Lightning Process study:
This is what Erik Borge Skei wrote in his letter to the editor:
An application from our research environment to study the positive and negative effects of the disputed treatment "Lightning Process" was strongly criticized by the user representatives, despite the fact that the application received good scientific evaluation and research lacking in the method. In retrospect, the Research Council has in the form of letters conveyed that the patient association's strong opposition to this project was the main reason why the project was rejected.

Here is the Research Council of Norway's reply to that:
At Aftenposten, clinic director Erik Borge Skei at Ahus expresses concern that patient pressure damages the research conditions. Skei refers to an application for Lightning Process (LP) which was one of 19 applications we received for the first round in a two-step application process in BEHOV-ME.Together with nine other applications, it was considered too low on the criteria relevance, utility and user involvement of the user panel. Therefore, it was not forwarded to the assessment of international experts and has therefore not received a "good scientific assessment".
 
Kalliope said:
The Norwegian ME Association, Rogaland County, has worked on a school project on adapted teaching for pupils with ME.
The project is now finished and is soon ready to be presented at schools. As part of the project, four short animations have been made. One of them is publicly available, a film about 16 year old Lisa (with subtitles in several languages).

For the next few days one of the other films are available to see as well. This is about ME and friends. It's in Norwegian and does not have any subtitles, but I hope people in Denmark and Sweden will be able to understand it.

Here is link to the film. Password is "venn".

Duration: 2 minutes.
Click to expand...

Thanks @Kalliope . These are excellent.
 
A Norwegian news site on research has an article today about crowdfunding research. RituxME is used as an example. Olav Mella and the initiator behind a crowdfunding for RituxME, Maria Gjerpe, are interviewed.

Forskning.no: Folkefinansiering av forskning: Forskere ber folk flest åpne lommeboka
google translation: Crowdfunding of research: Scientists ask the public to open their wallets

Project manager and professor Olav Mella says that he did not know about the campaign before Gjerpe informed him that it had started, but that they looked at the money as a welcome helping hand.

The Research Council also granted funding, and the study was initiated. Despite the promising results in the pilot study, the larger study did not show any effect of Rituximab. Now, Mella and his colleagues are researching the mechanisms behind ME.

- Is it appropriate for you to take the initiative yourself to raise money for further research?

- I haven't thought of that as an opportunity. You should never say never, but at least we have no plans for it, says Mella.

He believes the threshold for taking such an initiative is higher in Norway than in many other countries, due to the financing system.

- I think it would be seen as a bit suspicious and that most researchers would be reluctant of it.
 
Sly Saint said:
michael sharpe has retweeted this:


article here:
https://www.recoverynorway.org/2019/01/24/bard-stranheim/

why is MS promoting LP?

(thought about putting it in its own thread but did not want to give it that much prominence).

eta: just spotted another one he retweeted a week ago
Click to expand...

It might not be all bad that RecoveryNorge is trying to launch internationally, it means they will also meet scrutiny from more people.
 
Sly Saint said:
why is MS promoting LP?
Click to expand...
Quacks recognize each other. The LP research is of equal low quality as PACE, cherry-picked and maximally biased. Not much surprise here, though it certainly raises further issue about how much of a waste the millions spent on their bullshit research was, that it is roughly equivalent in quality and value as life coaching and NLP.
 
You must log in or register to reply here.
Back
Top Bottom