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 new guideline for “long-term fatigue—including ME/CFS” is so problematic. 

As I reported last week, the draft guideline, produced by the Norwegian Institute of Public Health (NIPH), 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. (It is worth noting that Lillebeth Larun, the lead author of Cochrane’s bullshit 2019 review of exercise therapies for what it called CFS/ME, is a researcher at NIPH.)

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.

The Norwegian Labour and Welfare Administration, called NAV (or Nav) for short, is the country’s public welfare agency. Among many other function, the agency assesses whether someone is eligible for disability payments. The requirements including having engaged in efforts to overcome the source of disability, although how that requirement is 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.

Dr Signe Flottorp, research director at the Norwegian Institute of Public Health, served as an expert witness for Nav.  In her testimony, she exhibited a disturbing lack of knowledge about developments in ME/CFS research and acknowledged having only seen one patient with severe disease. Furthermore, she asserted that patients should read the anecdotal accounts of “recovery” on Recovery Norway’s home page even as she dismissed the thousands of survey respondents who said graded exercise therapy had made them worse. Recovery Norway is closely linked to proponents of the Lightning Process, the woo-woo intervention founded by osteopath Phil Parker–a former faith healer who once claimed he could enter people’s bodies to diagnose their ailments.

The case history, included in full below, is well worth reading. (Google translate is responsible for the translation, so please forgive any inadvertent translation errors.)

**********

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.

Universal access to public buildings

It had snowed during the night, and there were high snowbanks outside the courthouse, which would prove to be a major problem for Kolbjørn to attend court. The snowbanks made it impossible to get off the wheelchair and enter the building, but when they were informed about it, the judges looked as if they thought: “This is not our problem,” and when the ME Association’s general secretary, Grethe Reinhardtsen, reminded the guard at the reception about the law on universal accessibility (TEK17) in public buildings, they were not helpful either. In the end, Kolbjørn’s father and the BPA had to shovel the sidewalk to make it accessible.

Introduction from the lawyers

While the hearing was ongoing, both parties’ lawyers gave introductions, describing their starting points and the documents they relied on, both in terms of law, knowledge of ME in general, and Kolbjørn’s medical history.

Introduction from Kolbjørn’s lawyer

Kolbjørn’s lawyer said that the illness was long-lasting, with little or no prospect of recovery, and that the patient had tried all available treatments. Light physiotherapy at home had to be discontinued due to deterioration, and he had been refused all other referrals due to the severity of his condition. The prognosis is not good for patients who are so ill, and in any case – even if Kolbjørn were to recover tomorrow, he has a whole childhood and adolescence of practical and social skills to acquire before one can even think about work-oriented measures.

Introduction from NAV’s lawyer

Nav’s lawyer argued that the prognosis for ME was good, and that recovery from ME was about faith and hope and motivation. The lawyer went to great lengths to insinuate that the low level of functioning was due to the family’s focus on activity adjustment, and that they believed that ME was a biomedical disease (according to the lawyer, a view shared only by a small, peculiar group, and contrary to “general opinion”), which meant that they did not seek documented effective treatment in the public health system, and only “alternative” practitioners such as the Lillestrøm Clinic. People who believe in the biomedical model are just waiting for a pill, he claimed, and they are not open to other approaches, or motivated to try. “If they continue as they are now, he will never recover!”

Kolbjørn in court

It was only later in the day that Kolbjørn was able to enter the building. He was wheeled in, lying in a wheelchair, and wearing a mask to shield himself from the light. He spoke slowly and fumbled, clearly searching for words, deep in his brain fog, but explained how his day had been. It was a highlight if he managed to open the door to the veranda and let the dog out in the morning. The rest of the day he spent mostly in bed. He explained that there was nothing he wanted more than to get well.

Nav’s lawyer still believed that it was about motivation: “Do you realize that there are many people who have been much sicker than you who have recovered completely?” he shouted. “What do you think about that?”

“… that … is nice … for them,” Kolbjørn replied in a weak voice.

It was heartbreaking to see and hear, and absolutely incredible that there are questions about whether he qualified for disability benefits!

Expert witnesses for Kolbjørn

Expert witnesses on Kolbjørn’s side were Kristian Sommerfelt, Ketil Jakobsen, Ola Didrik Saugstad and Anne Kielland.

Saugstad and Sommerfelt

Saugstad and Sommerfelt explained their understanding model for ME – the biomedical one – which is now internationally accepted, and that the biopsychosocial understanding is on its way out, and mentioned, among other things, the recent German initiative that provided 500 million Euros for biomedical research on ME and Long Covid.

Both agreed that unfortunately there was not a good prognosis for ME, after meeting many hundreds of patients each. Sommerfelt pointed out the absence of population-based follow-up studies on those who became ill as children, and that studies on small, random samples are unreliable. (Apart from Anne Kielland’s study on income before and after G93.3 diagnosis, there are no studies that look at prognosis on a representative sample of patients.) There is no basis to say that it is likely that Kolbjørn will recover. Several studies support that those who became ill early are overrepresented among those with serious illness.

Sommerfelt pointed out that there was clinical experience that repeated PEM could lead to permanent deterioration, and that the treatments that were proposed could lead to a worse life for Kolbjørn.

Saugstad spoke about Røysumtunet, where the experience was that activity adaptation could contribute to some improvement in some people. He believed that cognitive behavioral therapy or LP did not belong as treatments for ME.

Ketil Jakobsen

Ketil Jakobsen told how he had originally believed in cognitive therapy and LP, but had to realize that it did not work – the patients instead got sicker. He had no faith that these treatments would lead to a better level of functioning for Kolbjørn, or bring him closer to working life. He said it was important to let Kolbjørn have a dignified life, and to take care of everyday life and the life he has, he advised against work probation, cognitive therapy and training – there is a risk of tearing down what he has now if he is forced into treatment above the tolerance limit.

Anne Kielland

Anne Kielland explained her research on registry data, which found that very few who had received a G93.3 diagnosis return to an income that indicates they are in work.

“If at least 5,000 have gone to LP and some have gotten better, why don’t I find the healthy ones in the registry data? Didn’t they have G93.3, like Kolbjørn?” She mentioned that Flottorp’s expert report refers to the 2012 study FITNET (CBT), and made the court aware that it was replicated by Esther Crawley, published last year, with completely different results, and the intervention was advised against by the authors. She pointed out that the Coperio study is referred to in the expert opinion, and that one of the authors has stated in Dagbladet that half of the participants had normal physical functioning the following year – she finds people with Kolbjørn’s diagnosis code in the registries, and who are listed as having been at this center, but none have anywhere near a median income the following year, the vast majority have no income at all.” She has not published the latter figures, but took this to explain why she finds it difficult to believe the conclusions in that study. She also said, “We must assume that the many thousands of G93.3 patients we find in the registries have been treated fairly thoroughly with the public services we have today. Yet, virtually no one has returned to normal work. I believe that provides a crystal-clear answer as to whether there is still appropriate treatment. The treatment we have to offer is clearly not appropriate.”

Handlers

Dag Gundersen Storla and Kolbjørn’s GP explained his condition, follow-up and treatment. The GP has followed up with home visits and telephone contact since Kolbjørn was a child, and said that the patient could not tolerate further treatment, even if it took place at home. There were no services in the municipality for such sick patients. Coping courses are for people who have recently become ill, and they had been refused rehabilitation.

For example, the family had applied for cognitive therapy at DPS, been rejected, appealed and been rejected again, appealed to the State Administrator, and finally been rejected. How are they supposed to be able to use services that don’t exist?

Nav’s consulting physician,

Nav’s consulting physician, Ingvild Damskog, explained Nav’s view. She reiterated that Nav relates to the “general perception of ME” as defined by the National Competence Service for CFS/ME and NEL. She believed that the National Supervisor for CFS/ME gave the competence services a mandate to monitor research on ME and inform about it, and that NAV had to assume that what was on the website of the competence service was correct. She believed that activity matching does not work, they do not see the effect of it (and have thus missed the point that it is a coping strategy, not a treatment). She believed that there are “many” who recover. When Anne Kielland asked why these recoveries were not visible in the statistics, she could not answer.

She talked a lot about “motivation,” and that a lack of faith in treatment would cause it to not work. I took it as meaning that the family and Kolbjørn lacked motivation, which was why he was still sick.

She said that absolutely everything that can be thought of as leading to improvement should be tried. You have to be open to other techniques and ways of thinking, when what you have already tried does not work, she said. Rapid changes can occur when the patient becomes curious about new ways of thinking about the disease. They must move away from the idea that activity is dangerous, and instead say that activity is necessary and important, it provides safe exploration of activity, instead of it feeling dangerous. Severity does not mean anything for carrying out treatment.

She believes that there are therapists who can help everywhere in the healthcare system, so there is no argument that treatment is not available.

Expert witness for Nav

Signe Flottorp

Signe Flottorp said much of the same as Nav’s consulting physician, but also talked about research on different models of understanding, and tried to place ME under MUPS. She mentioned research that supported her view, but failed to mention anything that contradicted it. She mentioned, for example, the FITNET study as an example that cognitive therapy has a good effect – but when she was later asked if she knew about the replication of the FITNET study (internet-based cognitive therapy for adolescents) and that the replication did not make the same findings as the original , and is not effective, or that another study found that graded training did not work , she replied that she did not know about it.

She also believed that it was important for recovery to read stories on Recovery’s pages about people who have recovered, but that the ME Association’s user surveys could not be trusted, they were probably manipulated to show the results the association wanted.

She also claimed that “many are recovering.”

When asked by Saugstad if she had met seriously ill ME patients, it emerged that she had only met one, but that she believed she could extrapolate from what she knew to patients with moderate ME.

All of the expert witnesses on Kolbjørn’s side described Flottorp’s written statement as poor, convoluted and unbalanced. Anne Kielland characterized the submission as a party submission, not an expert statement.

My reactions to Flottorp’s post

My own opinion is that Flottorp had engaged in extensive “cherrypicking” where she only included what supported her view, and ignored everything that said otherwise. I find such an attitude strange in someone whose job is to create summaries of research for the Norwegian Institute of Public Health, and it makes me skeptical about the quality of what she has delivered before.

I am also, to put it mildly, outraged that she claims under oath to tell the truth that the ME Association’s user surveys are manipulated. They are not – and if she is going to claim things that call the association’s and my integrity into question, she should be required to provide evidence.

Final procedure

Kolbjørn’s lawyer

The closing arguments from the lawyers largely focused on referring to previous case law on how Nav’s treatment requirements should be interpreted, and how to deal with severity, and prospects for improvement or deterioration. The Civil Ombudsman’s statement that Nav could not order treatment when there was a risk of deterioration was also discussed. This is far too complicated to reproduce here.

Kolbjørn’s lawyer argued that disability benefits should be granted because the chances of ever finding gainful employment were so slim. Treatment could only be seen as appropriate if it improved earning capacity, he argued, and there was no chance of that here.

If you define the treatment requirement so strictly that it is never satisfied as long as there is a hypothetical chance of recovery, and claim that treatment should take place over a long period of time, you are in practice depriving ME sufferers of the right to disability insurance. (And probably several other patient groups!)

Nav’s lawyer

Nav’s lawyer believed that the treatment requirement should be interpreted as strictly as possible. He said that NAV did not need to deal with the Civil Ombudsman’s statement because NAV assumed that all treatment provided by the Norwegian health service was reasonable, and that one could therefore not get sicker from it. PEM was only a few hours of discomfort. The Social Security Court also had more medical expertise than the Civil Ombudsman. He also believed that it was not NAV’s responsibility to find out what treatment was available, that the sick person had not been able to find it was not NAV’s problem, NAV had to trust that what was mentioned in the guide existed.

He attempted to undermine the credibility of Kolbjørn’s witnesses: “They all belong to the same view.” Again, a biomedical view was portrayed as frivolous and peripheral.

He questioned the motivation of both the patient, the GP and the family. A treatment had to be proven useless before it was prescribed, even if it was “unlikely” to produce improvement if it were tried.

The impressions I am left with

Dangerous arrogance from NAV

I am left with the impression of a dangerously arrogant Nav that completely lacks ground contact, both in terms of knowledge about ME, what the realities are in the Norwegian healthcare system, and what the effect of the measures they demand should be implemented.

I have previously sat in a meeting with the chief physician at Nav, and requested figures on the effect of the measures they require for ME sufferers, and have been told that Nav does not have such figures. The ME association has presented figures to Nav that more than half believe they are further away from working life than before the treatments, which is in line with Kielland’s data. Nav is not listening. It appears to me as if their view of what treatments ME sufferers should undergo is pure ideology: They refuse to listen to the sufferers about deterioration, they refuse to deal with research that finds that no one is getting a job… Then they lack ground contact, and what they are doing can only be called an abuse of power.

I also wonder if Nav is speculating that few people with ME have the means or strength to pursue such a case, and are simply giving up. I have deep admiration for the family who are able to stand by this. They have set up a joint venture to pay for the legal proceedings .

Delusions about available treatment

The view that there are treatment options in the public health system for ME is a delusion. Rehabilitation centers only accept patients with mild and mildly moderate degrees of ME, municipal services with ME expertise are extremely rare. ME sufferers are not entitled to cognitive therapy from DPS, and end up at the very back of an already too long queue. When Nav says that this has nothing to do with them, the sufferers end up in a completely Kafkaesque situation. It is overtime that someone gives Nav a reality check.

The so-called “expertise service” is causing harm

The case also highlights the enormous damage the National (in)competence service for CFS/ME is doing with its one-sided focus on a “psychosocial” explanation for ME (“bio” is completely and utterly missing from the service’s website). The service facilitates Nav’s abuse of power when it ignores the large amount of biomedical research that exists, and fails to account for it. The service’s consistent refusal to listen to patients and take their experiences seriously is just one example of how they are failing to fulfill their mandate. There can be no doubt today that biological mechanisms exist, and by failing to provide information about this, the service is preventing sick people from receiving proper health care.

New guidelines must provide clear, unambiguous recommendations

The case also highlights how important it is that a new guideline is clear about what it actually recommends, what the expected prognosis is, that it does not mention treatment options that do not exist, and that it is crystal clear about the very real risk of permanent deterioration in severe/repeated PEM. We ME sufferers need a guideline that protects us from abuse.

I wish all the best for Kolbjørn and his family.

I can’t get the image of Kolbjørn in court out of my head, and I can’t see this case as anything other than a gross abuse by Nav. I sincerely hope that he wins, and that he gets peace of mind, and a predictable everyday life and finances.