Comments to the report from The Norwegian Knowledge Centre for the Health Services (equivalent to UK NICE) from the Norwegian M.E. Association


 

Key points

8th June 2006
  • The diagnostic code has been left out in the report. In accordance with WHO’s International Classification of Diseases, CFS/ME is placed in ICD-10, G93.3, in the chapter on brain disorders. Why has the information that ME is classified as a neurological disease been left out?
  • ME has been classified by the WHO as a neurological disorder for 37 years, but in the report a new interpretation of CFS/ME has been constructed as a condition which breaks with the traditional two-class schooling of diseases as either somatic or mental. For this reason the report will, for many, give the impression that ME is a psychiatric disorder. In historical sources ME is characterised as a neurological disease of infectious origin. Some 60 epidemics have been registered all over the world, but under different names (atypical polio, abortive polio, epidemic neuromyasthenia, Iceland-/Akureyri-/Royal Free-disease). Historical sources describe ME best.
  • What is the real reason for CFS/ME to be placed between psychiatry and somatic disease? The patients’ experiences and knowledge have not been adequately acknowledged.
  • This report is going to make the situation for ME-patients even more difficult than it is today in that the opinions will continue to be divided. Patients will be advised to push themselves beyond their activity levels and not be advised of the possible serious consequences if they do so. The belief that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are the only treatment options that have been documented to have effect, although all the studies are weak, will reinforce the belief that ME is a behavioural problem and thus jeopardise the patients’ benefit claims
    • .
  • The disease evolution is triggered by activity, infections and all types of strains. Such a development can involve an irreversible worsening in severity of disability that can last for years. The consequences of wrong treatments are not touched in the report (i.e. treatments such as training and medications).
  • There is little focus on research which shows pathological abnormalities. A number of immunological, neurological and endocrine abnormalities have been found in ME-patients.
  • The patients’ experience is that the recommended treatments either do not help or do harm.
  • The authors of the report advocate hypotheses of causes for which there are no scientific basis.
  • ME is a not a condition of fatigue, but is characterized by a quick cognitive and muscular fatigue after activity, reduced sustainability and long recovery. In addition there are a number of symptoms from different organ systems.
  • The patients do not recognise themselves in the example patient-story in the introduction (i.e. not classic ME). Are the results valid when patients all over the world do not recognise themselves?
  • Large patient surveys in the UK show the opposite of the results in the report.
  • Fifty personal stories from the members of The Norwegian M.E. Association were submitted and support the results of the British patient surveys.
  • The results from research on heterogenic groups cannot be generalised to ME-patients. In this report, studies that are based on different case definitions have been included in the same analysis. One of these case definitions is wide and unspecific, and refers to patients that say no more about them than that they have felt very fatigued for some months. Hence, the patients on which the report is based on are so heterogeneous and poorly defined that it is highly unclear what kind of patients the results are representative of. The conclusions are therefore questionable.
  • There is a clear need for sub grouping patients that come under the umbrella term of CFS (Chronic Fatigue Syndrome). International ME-experts agree about this.
  • The use of overview articles as a method for research has strong weaknesses when it includes studies of heterogeneous  populations; the critique of the method does not focus on the fact that the evidence basis is very weak.
  • The articles that are included in the report are strongly criticised internationally; primary studies of poor validity are included, and this weakens the overview articles, and with that also the meta analysis.

These key points have been documented by the Norwegian M.E. Association 8th June 2006.

[Compare these points to IiME's submission to the UK NICE in response to their guidelines for ME.]