Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

By David Tuller, DrPH

A recent disability case in Norway provides a good example of why the draft of a new guideline for “long-term fatigue—including ME/CFS” is so problematic. 

As I reported last week, the draft guideline, produced by the Norwegian Directorate of Health*, generally favors the biopsychosocial approach. The guideline offers few specifics about management and treatment of ME/CFS, and minimal information about post-exertional malaise. Public comment on the draft is open until May 4th.  (*I originally attributed the draft to the Norwegian Institute of Public Health. I apologize for the error.)

Trude Schei, assistant secretary general of the Norwegian ME Association, served as a consumer representative on a committee offering input to the NIPH. She, along with other consumer representatives, has dissented from the draft and issued a statement outlining her concerns. Some die-hard biopsychosocial proponents on the committee also dissented, arguing that the draft does not go far enough in promoting their perspective.

Indeed, Norway is something of a hotbed of biopsychosocial ideology. It is worth remembering that Lillebeth Larun, the lead author of the outdated and harmful Cochrane review that promoted exercise therapies for what was then being called CFS/ME, is a researcher at the Norwegian Institute of Public Health, another major agency. And some of the country’s leading public health and medical officials are big fans of the woo-woo Lightning Process, a so-called “mind-body” intervention that was founded by osteopath Phil Parker–a former faith healer who once claimed to be able to enter people’s bodies to diagnose their ailments.

The Norwegian Labour and Welfare Administration, called Nav (or NAV) for short, is the country’s public welfare agency. Among many other functions, the agency assesses whether someone is eligible for disability payments. The requirements include that the prognosis is poor and that the patient has engaged in efforts to overcome the source of disability, although how those requirements are interpreted can vary among the parties involved.

The Norwegian ME Association recently posted an account by Schei of a hearing involving a young man’s effort to obtain disability benefits. The account makes for troubling reading. As Schei notes, “the case provided frightening perspectives on Nav’s view of ME”—specifically, that “the prognosis for ME was good, and that recovery from ME was about faith and hope and motivation.” Given that, any failure to get better can be interpreted as the patient’s fault.

The case history from the Norwegian ME Association’s website is well worth reading. I have included the opening section below. (Google translate–not the Norwegian ME Association–is responsible for the translation. I cannot vouch for how accurately the translation reflects the meaning of the original Norwegian text.)

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Account by Trude Schei of the Norwegian ME Association

A case has just been brought before the Gulating Court of Appeal regarding whether a young man, 23 years old and with ME, Kolbjørn, meets Nav’s conditions for receiving disability benefits.

The case provided frightening perspectives on Nav’s view of ME, and on the definitional power of the expert service – and how cruel the consequences are for those who are ill.

I followed the case from the bench, and will try to give a brief summary of my impressions and reactions, and what I noticed. There was a lot that was said, and a lot of law that went over my head. I will try to give as good a description as possible – but it is impossible to include everything. I hope I have not made any mistakes – but if I have, I apologize in advance, both to lawyers and witnesses! I am happy to correct you if I have misunderstood anything!

My reactions are last in the post.

Trude Schei

Background

It’s actually a very simple matter:

Is there any prospect that a young man with severe ME, who has been ill since he was four years old, has not even completed primary school, and is dependent on help for everything, will get better and get a job in the foreseeable future – or will he receive disability benefits?

Section 12.5 of the National Insurance Act states that all “appropriate” treatment must be completed before a person is to receive disability benefits. The functional impairment must also be “permanent”. This means that what is the prognosis for ME and what kind of treatment can possibly improve the working or earning capacity of ME sufferers are absolutely central questions. It also becomes what is meant by the terms “appropriate” and “permanent”. The matter is therefore important in principle.

Kolbjørn has previously been denied disability benefits, and the social security court has agreed, because they believe that not enough attempts have been made at treatment. Kolbjørn himself and his family believe that they have tried what is possible and available.

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Again, you can read the rest here.