Kalliope
Senior Member (Voting Rights)
Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) published today a report on ME. They are an independent national authority, tasked by the government and evaluates methods used by medical and social services.
SBU: Myalgisk encefalomyelit och kroniskt trötthetssyndrom (ME/CFS)
The report is in Swedish, but they have an English section on their website so hopefully there will come an article about the report in English.
The report is 77 pages. Includes introduction, background, method, evaluation of treatments, prognosis, patient experiences and discussion.
Senior doctor at the ME ward at Stora Sköndal, Per Juli, is expert advisor. That's promising for the report.
Here is the main summary (google translated)
Main results
A key finding is that for persons diagnosed under the Canadian criteria, there is no basis for assessing the effects of treatments. Most studies used older criteria and therefore there is a risk that the participants had other conditions, such as fatigue syndrome. Therefore, it is not possible to determine whether the results are transmissible to persons diagnosed under the Canadian criteria.
A few studies, mainly about drug effects, have used the Canadian criteria. None of them could demonstrate that fatigue decreased compared to a control group.
The studies on prognosis used older criteria. Two Nordic studies showed that a significant proportion of the participants had not been restored during follow-up up to ten years after the symptoms began. An English and a Norwegian study found that many of those diagnosed at a specialist clinic after having had symptoms and been ill-prescribed for several years had not been able to start working or studying in follow-up many years later. However, it was not possible to judge whether the forecast is related to age, sex or other factors. The studies were few, small and had major methodological shortcomings.
Studies about patients' experiences and experiences of care were mostly about primary care. The participants saw it as a milestone to get a diagnosis and found that personalized counseling was important for moving on in life. However, they felt that the process of diagnosis was heavy and frustrating and that they were faced with insufficient understanding and knowledge about ME / CFS.
Discussion
The report shows that there are many knowledge slots where there is no research, and many of them are because we do not know what causes ME / CFS. Knowledge gaps that are partly related to this are diagnostic methods and possibilities for cure or disease modifying treatment.
The report also points to the importance of careful diagnostics, which may require multidisciplinary specialist competence to rule out other permissions that can be treated.
Finally, we want to point out that the absence of scientific support for a treatment is not the same as the treatment lacking effect. Pending further research, it is important to support those who have ME / CFS to get the best quality of life, activity and community involvement. As the condition is relatively unusual, compared with stress-related fatigue or chronic pain, it is likely to benefit from specialized ME / CFS receptions that will continuously monitor international knowledge development and put it into practice.
SBU: Myalgisk encefalomyelit och kroniskt trötthetssyndrom (ME/CFS)
The report is in Swedish, but they have an English section on their website so hopefully there will come an article about the report in English.
The report is 77 pages. Includes introduction, background, method, evaluation of treatments, prognosis, patient experiences and discussion.
Senior doctor at the ME ward at Stora Sköndal, Per Juli, is expert advisor. That's promising for the report.
Here is the main summary (google translated)
Main results
A key finding is that for persons diagnosed under the Canadian criteria, there is no basis for assessing the effects of treatments. Most studies used older criteria and therefore there is a risk that the participants had other conditions, such as fatigue syndrome. Therefore, it is not possible to determine whether the results are transmissible to persons diagnosed under the Canadian criteria.
A few studies, mainly about drug effects, have used the Canadian criteria. None of them could demonstrate that fatigue decreased compared to a control group.
The studies on prognosis used older criteria. Two Nordic studies showed that a significant proportion of the participants had not been restored during follow-up up to ten years after the symptoms began. An English and a Norwegian study found that many of those diagnosed at a specialist clinic after having had symptoms and been ill-prescribed for several years had not been able to start working or studying in follow-up many years later. However, it was not possible to judge whether the forecast is related to age, sex or other factors. The studies were few, small and had major methodological shortcomings.
Studies about patients' experiences and experiences of care were mostly about primary care. The participants saw it as a milestone to get a diagnosis and found that personalized counseling was important for moving on in life. However, they felt that the process of diagnosis was heavy and frustrating and that they were faced with insufficient understanding and knowledge about ME / CFS.
Discussion
The report shows that there are many knowledge slots where there is no research, and many of them are because we do not know what causes ME / CFS. Knowledge gaps that are partly related to this are diagnostic methods and possibilities for cure or disease modifying treatment.
The report also points to the importance of careful diagnostics, which may require multidisciplinary specialist competence to rule out other permissions that can be treated.
Finally, we want to point out that the absence of scientific support for a treatment is not the same as the treatment lacking effect. Pending further research, it is important to support those who have ME / CFS to get the best quality of life, activity and community involvement. As the condition is relatively unusual, compared with stress-related fatigue or chronic pain, it is likely to benefit from specialized ME / CFS receptions that will continuously monitor international knowledge development and put it into practice.
