The Norwegian professor in biology, Kristian Gundersen, is known for his scepticism of alternative treatments (yet enthusiastic of Lightning Process!). Today he has written in one of the biggest newspapers in Norway, supporting the PACE-trial and warning against patients having opinions regarding medical research. Unbelievable!
Google translation ("In ignorance" is a title the newspaper has on problematic science-news)
Ignorance: Patients and their researchers
KRISTIAN GUNDERSEN PROFESSOR OF BIOLOGY AT THE UNIVERSITY OF OSLO
UPDATED: 20.APR. 2016 9:44 p.m. ISSUED: 20.APR. 2016 3:25 p.m.
Strong patient groups must not be allowed to force through unilateral research.
In ignorance writes Nina Kristiansen, Kristian Gundersen, Øyvind Østerud and Simen Gaure every week about what they consider inadequate research, embarrassed dissemination, ignorant politics or plain cheating.
Patient participation is a slogan in healthcare. In the treatment of the individual patient, this is obviously important from a human rights and consumer perspective. But patients should have special rights in assessing the causes of disease and treatment studies?
Top journal British Medical Journal has introduced a scheme that patients participating in the peer review, ie without being peers. Such a practice can be problematic for diseases where patients and their organizations have very strong opinions that conflict with scientific assessments.
worthless method
Two retired professors at the University of Oslo got big headlines when they in 2013 claimed they found Borrelia bacteria through microscopy of blood in ME patients. This gave many patients with Lars Monsen spearheaded finally a biological explanation for their illness: They were not mentally ill.
The conclusion was strongly desired and support for pensioners was massive.
Kristian Gundersen
Many scientists believed, however, that these studies were academically meaningless. Nevertheless pressured then-Health Minister Jonas Gahr Støre Public Health to further research method.
The publication came 15 February this year and conclude that the method is worthless, and the editor of the journal writes in a comment that you had had at least 1,000 times more bacteria in the blood than is reasonable to expect if the method should have been even theoretically possible.
Let's hope the patients act more seriously ahead of the Norwegian Research Council recently decided that ME-patients themselves now will be involved in deciding what it should do research on this field.
PACE study
It has also been turbulence around a study called PACE which is the largest made in ME. The British study was originally published in the top journal Lancet, concluded that treatment with physical exercise and cognitive behavioral therapy is beneficial for ME patients.
This fits well with the hypothesis that ME has psychological causes.
Criticism has been massive, and 7 March was published 11,000 signatures demanding the extradition of the raw data underlying the study. The researchers say that this is in conflict with confidentiality and that data already made available to independent researchers.
The case is pending now in the British legal system.
The demand for access to data is legitimate and should in one way or another way complied, but one can wonder if such massive campaigns really motivated in the pursuit of truth. It is known that tobacco industry and skeptics have used endless transparency requirements for harassing researchers.
personal attacks
The editor of the Lancet says he has never experienced such a reaction on a publication, "An orchestrated attempt to undermine the credibility of the study and researchers from patient groups." Even some of the more serous critique of PACE study is mixed with personal attacks.
PACE researchers themselves responding well to scientifically speaking, but wound inexorably into a hostile discussion about its own integrity.
If there are strong populations want society to accept almost anything of lousy research supporting hypotheses they like (oslo pensioners), while requiring the perfect of researchers concludes differently (PACE), will get a distorted picture of reality.
It is not the purpose of scientific debate.
Edit: Adding link
Google translation ("In ignorance" is a title the newspaper has on problematic science-news)
Ignorance: Patients and their researchers
KRISTIAN GUNDERSEN PROFESSOR OF BIOLOGY AT THE UNIVERSITY OF OSLO
UPDATED: 20.APR. 2016 9:44 p.m. ISSUED: 20.APR. 2016 3:25 p.m.
Strong patient groups must not be allowed to force through unilateral research.
In ignorance writes Nina Kristiansen, Kristian Gundersen, Øyvind Østerud and Simen Gaure every week about what they consider inadequate research, embarrassed dissemination, ignorant politics or plain cheating.
Patient participation is a slogan in healthcare. In the treatment of the individual patient, this is obviously important from a human rights and consumer perspective. But patients should have special rights in assessing the causes of disease and treatment studies?
Top journal British Medical Journal has introduced a scheme that patients participating in the peer review, ie without being peers. Such a practice can be problematic for diseases where patients and their organizations have very strong opinions that conflict with scientific assessments.
worthless method
Two retired professors at the University of Oslo got big headlines when they in 2013 claimed they found Borrelia bacteria through microscopy of blood in ME patients. This gave many patients with Lars Monsen spearheaded finally a biological explanation for their illness: They were not mentally ill.
The conclusion was strongly desired and support for pensioners was massive.
Kristian Gundersen
Many scientists believed, however, that these studies were academically meaningless. Nevertheless pressured then-Health Minister Jonas Gahr Støre Public Health to further research method.
The publication came 15 February this year and conclude that the method is worthless, and the editor of the journal writes in a comment that you had had at least 1,000 times more bacteria in the blood than is reasonable to expect if the method should have been even theoretically possible.
Let's hope the patients act more seriously ahead of the Norwegian Research Council recently decided that ME-patients themselves now will be involved in deciding what it should do research on this field.
PACE study
It has also been turbulence around a study called PACE which is the largest made in ME. The British study was originally published in the top journal Lancet, concluded that treatment with physical exercise and cognitive behavioral therapy is beneficial for ME patients.
This fits well with the hypothesis that ME has psychological causes.
Criticism has been massive, and 7 March was published 11,000 signatures demanding the extradition of the raw data underlying the study. The researchers say that this is in conflict with confidentiality and that data already made available to independent researchers.
The case is pending now in the British legal system.
The demand for access to data is legitimate and should in one way or another way complied, but one can wonder if such massive campaigns really motivated in the pursuit of truth. It is known that tobacco industry and skeptics have used endless transparency requirements for harassing researchers.
personal attacks
The editor of the Lancet says he has never experienced such a reaction on a publication, "An orchestrated attempt to undermine the credibility of the study and researchers from patient groups." Even some of the more serous critique of PACE study is mixed with personal attacks.
PACE researchers themselves responding well to scientifically speaking, but wound inexorably into a hostile discussion about its own integrity.
If there are strong populations want society to accept almost anything of lousy research supporting hypotheses they like (oslo pensioners), while requiring the perfect of researchers concludes differently (PACE), will get a distorted picture of reality.
It is not the purpose of scientific debate.
Edit: Adding link
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