Swedish agency for health technology assessment and assessment of social services (SBU) with report on ME

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.

 

A reaction of Sten Helmfrid on the Swedish report on Twitter:
https://twitter.com/user/status/1075005871174897664

 

This sounds like a positive development.

Great that they see the CCC as the standard diagnostic criteria and question results of cfs studies.

Would like to learn more about the report and the situation in Sweden. Do we have Swedish forum members who can give more background info?

 

I'm not so sure about the value of the Canadian criteria (I'm not too sure about the value of any particular criteria at the moment) but this sounds like a positive step. Thanks for letting us know.

 

It requires PEM, the Oxford and Fukuda criteria don't. Being less bad is also an improvement I guess.

 

I'm Swedish and even though I'm too foggy to give an exhaustive account at the moment, I can give you some information about the situation in Sweden.

Basically, it's ambiguous. On one hand we have a few clinics specializing in ME, and at least one of them (Stora Sköndal) has a biomedical approach and aren't doing GET and CBT (I'm a patient there myself). We also have this new report and there are good things happening.

However, the BPS-lobby are working hard and they do get some media coverage. The two big magazines for doctors and health care professionals (Läkartidningen and Dagens medicin) tend to write poorly about ME and never report about the advances of the biomedical research.

Politically, Sweden is following the UK meaning that austerity is very present and as expected, people with ME are victims of an awful situation at the Social Insurance Agency. Some people are denied income compensation if they don't do GET and pwME are in general suffering because most doctors don't know ME and the Social Insurance Agency are treating pwME like malingerers.

The former government issued this report and within a few days, the guidelines for the the Social Insurance Agency are expected to be released.

 

Oh and I forgot. When it comes to science we do have som good researchers but also a couple of BPS researchers and unfortunately, some of the BPS have just been granted more money for a study that seem to be about behavior. Like we didn't have enough of behavior studies that aren't helping us.

 

Thanks @Clementine

What's your take of the report? Is it as good as we're being told? Are there any negative points?

Many thanks in advance.

 

I have only looked through it briefly but so far, it's better than I expected (I expected this to come out as total biopsychosocial nonsense, but thank god it didn't). I think there are a couple of problems but I need to read though this thoroughly when my head is clearer before I elaborate on that.

 

I contacted SBU asking if there will be a summary in English, which they confirmed

 

Short article with summary of main points from the journal to the Swedish Medical Association.

Läkartidningen: SBU: Underlag saknas för behandling vi ME/CFS
Swedish Medical Association: SBU: Evidence is lacking for treatments of ME/CFS