The chronicle is published today in Norways biggest non-tabloid newspaper (Aftenposten)
Translation is mainly by Google translate with a few attempts from me to correct the strangest results of this.
Chronicle: The ME sufferers deserve serious research
Now we need politicians, health and research authorities rethink and use the resources to research that could solve the whole ME riddle. Too much time and money has gone into pursuing the wrong track.
chronicle -
Updated: 02.des. 2014 9:40 p.m.
See the list of authors chronicle the bottom of the text.
Recently, the media report that a young man had to crawl into the ambulance that would fetch him. He had ME and could not walk. He is now in a nursing home with a strong worsening of the condition.
Certainly ME an enigmatic disease, but not as enigmatic as many would have it. And not so enigmatic that it justifies assaulting patients.
A growing research literature suggests that ME patients have an activated immune system. In a study from Japan where ME patients were examined with PET scan, an advanced method of mapping the brain, they found signs of inflammation in the brain.
Research at Haukeland Hospital to Fluge and Mella also indicate that CFS may be an autoimmune disease, ie a disease where the body's immune system attacks the body's own cells and tissues and damage these. A brand new study from Stanford University suggests that ME patients have damage to the brain's white matter.
Helps confusion
Many who speak out about ME, consistently disregard this extensive body of literature. It further contributes to confusion when one does not precisely define the disease so that one can talk about the same patient group and highlights treatments that do not have a documented effect on ME.
This is common feature of several Norwegian works performed by those who claim that ME caused an activation of the autonomic nervous system.
An article published in Aftenposten on 21 May argues that cognitive behavioral therapy is effective in ME, which is directly wrong when studying a well-defined ME group.
No disagree that the physiological and mental hang together, but from there to using this as a main approach to the treatment and understanding of ME, both undocumented and unscientific.
People with serious illnesses like cancer can also be affected psychologically, but hardly anyone would argue that the primary treatment of cancer should be cognitive behavioral therapy.
Reminiscent of climate skeptics
In summer, there were several new input from the strongest supporters of the understanding of ME as a stress response. These have many features in common with the so-called "climate skeptics"; those who still claim that climate change is not man-made despite an overwhelming scientific literature that shows the opposite.
The special with ME is that "climate skeptics", those who deny that there is a significant biomedical literature about ME, apparently have had the health authorities on their side.
This has led to abuses against this group of patients in health care, social services and child welfare.
In many cases social services require participation in behavioral therapy and graded exercise to provide financial support, despite the fact that these treatments are unproven and often makes ME sick even sicker. Patients and their relatives are suspicious made and characterized as difficult.
The CPS has also been drawn into, and in the most severe cases, parents have had to appear in court to fight for custody because they wanted to protect their children from harmful treatment.
This is a violation of the principles we want to base our health care system, that treatment should be based on research and documented.
In our opinion such abuses based on an inadequate and wrong understanding of what ME is, and a direct result of the psychosomatic approach has come to dominate the Norwegian healthcare.
little scientific
In addition to the abuse this vision has led, we find this approach and the research that underlies little scientific. One of the foremost proponents of stress theory and a very important agenda for Norwegian ME politics until now, Vegard Bruun Wyller, tested this hypothesis in a study using clonidine on young ME patients. This drug reduces the autonomic nervous system.
Treatment gave no effect, Wyller was unable to prove his theories. His research based on general well-known observation that not too ill ME patients have an activated autonomous nervous system.
However, it is elemental medical knowledge that such activation may be due to a number of conditions other than mental stress, such as chronic inflammatory diseases. That Wyller not able to substantiate his hypothesis shows how wrong it has been when health care and other agencies have built on his undocumented claims.
In the budget the government proposes to increase funding for both multidisciplinary outpatient clinics and diagnostic centers, and research on pain and fatigue diseases CSF / ME, fibromyalgia and Lyme disease.
It is positive, but it is crucial that these funds supports basic research related to infections, inflammation, immunology, neurology, and genetics.
Costly wrong track
In the United States now launching of a research project called "End ME / CSF". Steering includes geneticists, immunologists, neurobiologists and infectious diseases, including two former Nobel Prize winners.
The emphasis is on long-term basic research (basic research), which is the only way to go to get ahead in the understanding of the disease. It is also important that Norway will follow up this line.
Too much money, energy and time has gone on to pursue the wrong track as Lightning Process and cognitive behavior therapy. Thus many Norwegian experts also lost an opportunity to contribute to the understanding of the condition.
We are a group of professors in various fields who know ME from different angles. We are surprised that the methodical very weak research into ME and stress response has received such support in dominant environments. Knowledge of established research methods and principles seem to lack in some Norwegian medicine.
We represent a group that has a different view on the causes of ME than psychosomatic, and we want to contribute to ME patients being treated with respect and offered treatment that is built on international medical research more than on individual researchers beliefs and perceptions.
We urge politicians, health and research authorities to rethink and use the resources for innovative research that can solve the whole ME riddle.
The ME sufferers need it more than ever!
Chronicle Authors:
Arild Angelsen, Professor, Norwegian University of Life Sciences
Torstein Egeland, Professor, University of Oslo
Ruth Haug, Professor, Norwegian University of Life Sciences
Jan-Olav Henriksen, Professor, School of Theology
Tor Lea, Professor, Norwegian University of Life Sciences
Ola Didrik Saugstad, Professor, University of Oslo
Translation is mainly by Google translate with a few attempts from me to correct the strangest results of this.
Chronicle: The ME sufferers deserve serious research
Now we need politicians, health and research authorities rethink and use the resources to research that could solve the whole ME riddle. Too much time and money has gone into pursuing the wrong track.
chronicle -
Updated: 02.des. 2014 9:40 p.m.
See the list of authors chronicle the bottom of the text.
Recently, the media report that a young man had to crawl into the ambulance that would fetch him. He had ME and could not walk. He is now in a nursing home with a strong worsening of the condition.
Certainly ME an enigmatic disease, but not as enigmatic as many would have it. And not so enigmatic that it justifies assaulting patients.
A growing research literature suggests that ME patients have an activated immune system. In a study from Japan where ME patients were examined with PET scan, an advanced method of mapping the brain, they found signs of inflammation in the brain.
Research at Haukeland Hospital to Fluge and Mella also indicate that CFS may be an autoimmune disease, ie a disease where the body's immune system attacks the body's own cells and tissues and damage these. A brand new study from Stanford University suggests that ME patients have damage to the brain's white matter.
Helps confusion
Many who speak out about ME, consistently disregard this extensive body of literature. It further contributes to confusion when one does not precisely define the disease so that one can talk about the same patient group and highlights treatments that do not have a documented effect on ME.
This is common feature of several Norwegian works performed by those who claim that ME caused an activation of the autonomic nervous system.
An article published in Aftenposten on 21 May argues that cognitive behavioral therapy is effective in ME, which is directly wrong when studying a well-defined ME group.
No disagree that the physiological and mental hang together, but from there to using this as a main approach to the treatment and understanding of ME, both undocumented and unscientific.
People with serious illnesses like cancer can also be affected psychologically, but hardly anyone would argue that the primary treatment of cancer should be cognitive behavioral therapy.
Reminiscent of climate skeptics
In summer, there were several new input from the strongest supporters of the understanding of ME as a stress response. These have many features in common with the so-called "climate skeptics"; those who still claim that climate change is not man-made despite an overwhelming scientific literature that shows the opposite.
The special with ME is that "climate skeptics", those who deny that there is a significant biomedical literature about ME, apparently have had the health authorities on their side.
This has led to abuses against this group of patients in health care, social services and child welfare.
In many cases social services require participation in behavioral therapy and graded exercise to provide financial support, despite the fact that these treatments are unproven and often makes ME sick even sicker. Patients and their relatives are suspicious made and characterized as difficult.
The CPS has also been drawn into, and in the most severe cases, parents have had to appear in court to fight for custody because they wanted to protect their children from harmful treatment.
This is a violation of the principles we want to base our health care system, that treatment should be based on research and documented.
In our opinion such abuses based on an inadequate and wrong understanding of what ME is, and a direct result of the psychosomatic approach has come to dominate the Norwegian healthcare.
little scientific
In addition to the abuse this vision has led, we find this approach and the research that underlies little scientific. One of the foremost proponents of stress theory and a very important agenda for Norwegian ME politics until now, Vegard Bruun Wyller, tested this hypothesis in a study using clonidine on young ME patients. This drug reduces the autonomic nervous system.
Treatment gave no effect, Wyller was unable to prove his theories. His research based on general well-known observation that not too ill ME patients have an activated autonomous nervous system.
However, it is elemental medical knowledge that such activation may be due to a number of conditions other than mental stress, such as chronic inflammatory diseases. That Wyller not able to substantiate his hypothesis shows how wrong it has been when health care and other agencies have built on his undocumented claims.
In the budget the government proposes to increase funding for both multidisciplinary outpatient clinics and diagnostic centers, and research on pain and fatigue diseases CSF / ME, fibromyalgia and Lyme disease.
It is positive, but it is crucial that these funds supports basic research related to infections, inflammation, immunology, neurology, and genetics.
Costly wrong track
In the United States now launching of a research project called "End ME / CSF". Steering includes geneticists, immunologists, neurobiologists and infectious diseases, including two former Nobel Prize winners.
The emphasis is on long-term basic research (basic research), which is the only way to go to get ahead in the understanding of the disease. It is also important that Norway will follow up this line.
Too much money, energy and time has gone on to pursue the wrong track as Lightning Process and cognitive behavior therapy. Thus many Norwegian experts also lost an opportunity to contribute to the understanding of the condition.
We are a group of professors in various fields who know ME from different angles. We are surprised that the methodical very weak research into ME and stress response has received such support in dominant environments. Knowledge of established research methods and principles seem to lack in some Norwegian medicine.
We represent a group that has a different view on the causes of ME than psychosomatic, and we want to contribute to ME patients being treated with respect and offered treatment that is built on international medical research more than on individual researchers beliefs and perceptions.
We urge politicians, health and research authorities to rethink and use the resources for innovative research that can solve the whole ME riddle.
The ME sufferers need it more than ever!
Chronicle Authors:
Arild Angelsen, Professor, Norwegian University of Life Sciences
Torstein Egeland, Professor, University of Oslo
Ruth Haug, Professor, Norwegian University of Life Sciences
Jan-Olav Henriksen, Professor, School of Theology
Tor Lea, Professor, Norwegian University of Life Sciences
Ola Didrik Saugstad, Professor, University of Oslo