A circular from the Directorate of Labour and Welfare highlights that patients with M.E. or drug addiction «requires particularly in-depth assessments» when Nav is to assess disability benefits. A formalization of the stigma of ME patients, says Fafo researcher and sociologist Anne Kielland.
Translation from article by Pernille Vestengen in Norwegian newspaper Dagsavisen Fremtiden
– These are perhaps the two diagnoses already at the bottom of the «disease ladder», and here it is stated that special rules should apply to these two groups, says Anne Kielland in the research foundation Fafo. She is one of the researchers from Fafo and Sintef, which has now been researching ME patients’ experiences with public health and welfare services for several years. The results from the research project «The Service and ME» are not encouraging.
– This is very problematic. This means that the stigma of drug addicts and people with ME is legally formalized. They must therefore be examined extra carefully when they apply for disability benefits, Kielland says. She believes that this practice is perceived as a large and probably also disease-intensifying burden.
– It becomes a form of symbolic branding of this group. The law states that everyone can be granted disability benefits, if they have an illness that sufficiently affects their ability to make an income, but that is; only as long as you are not a drug addict or suffers from ME.
The circular also lists possible assessment and treatment measures for ME patients: Coping course, Graded Excersise and Training (GET), Cognitive Behavioural Therapy (CBT), stress management and addmittance in rehabilitation institutions. – The ambiguities this circular creates in practice push the responsibility onto Nav’s first line. We sympathize with the Nav emplyees, who are told that they must make a particularly in-depth assessment of the ME patients who apply for disability benefits, but at the same time have no tools that can help them to do this to any great extent. They get a list of tools they can use, which they probably know does not work, but that’s all they have.
Kielland believes that a problem with all the requirements Nav sets for ME patients is that they first and foremost appear as a form of bureaucratic duty to document that the case processing has been «in-depth». She believes that the imposed treatments do not contribute to better health, instead a large proportion becomes worse – both from the treatments themselves, but also from being in such long-term, stressful assessment processes.
This view is supported by the survey Kielland and the other researchers have done in the «Service and ME» reseach project, as well as a number of international studies and research projects. The results are so unequivocal that the health authorities in the USA and UK, among others, have refrained from recommending the above-mentioned treatments to ME patients.
– We experience that ME sufferers first and foremost need to be taken seriously in the process they go through. They must be confirmed in their despair over the situation. Only then can they begin to look ahead, says Anne Kielland. She believes that many may benefit from psychological help when they reach this stage, because it is violent to have to take on such a large loss of function, in addition to loss of social position due to the stigma of the illness.
– Cognitive therapy can have its mission, but only when the patients has reached a realization that the disease can become permanent – and themselves wants help to cope. Nav often encourages such treatment before they get there. Even skilled therapists will struggle to teach coping strategies to a person who will not yet realize that there will most likely not be any more mountain top hikes.
Kielland and the rest of her team hope their research can make politicians, the health services and Nav acknowledge how negatively current practice affects the lives of vulnerable people. – A minimum must be that you do not add to the burden for these vulnerable patients, the researcher emphasizes.
Greater requirements for documentation
Section chief Bente Thori-Aamot at the Directorate of Labor and Welfare explains that the circular has been prepared in collaboration with the Norwegian Directorate of Health and the National Competence Service for CFS/ME, and that Nav will adjust the text if the knowledge base changes and the Norwegian Directorate of Health changes the recommendation in the national guide for CFS/ME. Regarding the two diagnoses mentioned, Thori-Aamot writes that the regulations for the right to disability benefits are the same for people with CFS/ME and people with other illnesses. She emphasizes, however, that what appears in the circular is that «The requirement for documentation, observation time, and job descriptions will be greater in cases of unclear disease pictures without a known cause. In such cases, there may be modest objective findings in clinical examination. – CFS/ME is an exclusion diagnosis, which means that the illness must be assessed broadly, and this is why the circular has a separate section on this illness. The circular is designed to make it easier for NAV to assess the right to benefits, as there is no consensus in the medical professional community, she concludes.
Some results from «The Service and ME» research project
• 660 people with CFS / ME and other fatigue diseases participated in the survey from Fafo/SINTEF.
• It is estimated that 474 of them met the strictest diagnostic criteria for CFS/ME. 186 had other fatigue diagnoses.
• Seven out of ten ME patients answered that they experienced worsening of symptoms after a rehabilitation stay (– despite the fact that most said they enjoyed the stay and appreciated the social aspect).
• Among ME patients, just over nine out of ten stated that they became worse after a Nav-imposed work assessment.
• Among the entire sample, only seven percent had had a psychiatric diagnosis at some point before they developed a fatigue disease. (Five percent anxiety and depression, others were stress and PTSD.)
• On the other hand, a total of almost six out of ten had experienced shorter, longer or lasting symptoms of anxiety or depression – as a consequence of the diagnosis. (39 per cent for shorter periods, 14 per cent for longer periods and six per cent had permanent symptoms. Slightly more people with ME had more permanent symptoms, while slightly more of the others experienced more short-term symptoms.)
• Of the 357 ME patients, who were in a relationship with Nav, up to half were fairly or very dissatisfied with the caseworker’s level of knowledge about the disease. Just under a third were fairly or very satisfied with the level of knowledge.
• From register data, the researchers have calculated that an average of 1,852 Norwegians are diagnosed with CFS / ME per year. This is more than ten years ago and indicates that previous estimates, that between 10,000 and 20,000 people in Norway have ME, are too low.
[We note that the Section Chief at the Norwegian Directorate of Labor and Welfare seems to be unaware of that a number of illnesses have little or no objective findings, while only ME and drug addiction are mentioned in the circular. She also seems to be unaware that both the patient organisations and more than 7000 ME patients have demanded that the leadership of the National Competence Service for CFS/ME are replaced. The main reasons is that they do not pay any attention to international biomedicinal research, that they do not separate ME from other illnesses with chronic fatigue, and that they still give some damaging advice.]
Thank you to Anne Kielland and her research team, to journalist Pernille Vestengen and to Dagsavisen Fremtiden for allowing us to translate this article.