Yesterday we had kind of a big day here in Norway, ME-wise that is. For a while now, we have been waiting for a report from The Directorate of Health – a knowledge-summary about the state of ME/CFS.
A lot of speculation has followed this process, not at least due to a fear that CBT and GET again would dominate the end result and the recommendations for future health care – as it did in a similar report in 2006. Norway’s ME-Association (Norges ME-forening) and The ME-Network in Norway (MENiN) represented the patients in this important process. Several other patients also contributed with their experiences and knowledge through social media as well as in meetings and writing to representatives of the Directorate of Health.
Yesterday, the results from the process – a Summary of Knowledge – were submitted from the Directorate of Health to the Ministry of Health and Care Services in the form of a letter, giving recommendations for further treatment, care and research about ME in Norway. It is expected that the politicians will follow these recommendations. (Although we don’t know for sure yet, of course.)
Generally, most of these recommendations were met with joy in the patient community, and the ME-Association actually called it a milestone and a «partial victory for the ME-cause».
I want to share with you these news, and have thus taken some time to translate some of the material published yesterday. Please not that this is not an official translation from the health authorities of Norway, just a translation to share the news with you! I take full responsibility for any errors made in translations. Please feel free to share, with credit to the now tired translator.. 😉
1. Translation from the web-site of the Directorate of Health
The following text were published yesterday, the 23th of June, on the webpages of the Directorate of Health in Norway. Original text here.
CFS/ME Knowledge summary, evaluation and recommendation for Ministry of Health and Care Services
Many patients need services in an interaction between the primary- and specialist care. This interaction does unfortunately not function well enough today.
The Directorate of Health has answered the mission from the Ministry of Health and Care Services with the following main conclusions and recommendations. The full answer can be read in the box to the right. (Translation of the full answer will be posted later.) Link to the reports from the Center of Knowledge will follow later.
- It does not exist today a evidence based knowledge fundament to publish national guidelines or a general guide.
- With the background from the present reports, The Directorate of Health sees that it will still take time to build good, robust patient care for this group of patients.
- The knowledge review does not support an earlier recommendation made to use the NICE-criteria.
- The knowledge revies does not on a general level give support for recommending graded exercise therapy and/or cognitive therapy to everybody with CFS/ME.
- The knowledge review of Kenny De Meirleir’s research makes that the Directorate of Health, on the basis of today’s knowledge, can not recommend that the public health sector finances this kind of treatment.
- It is recommended that one identifies ongoing studies and makes a summary about existing studies regarding causality and diagnostics.
- New research projects and recommendations about interventions must be seen in regard to the severity of the disease; mild – moderate – severe – or very severe, and in what phase of the disease the patient is; unstable – phase of stabilisation – phase of rehabilitation/(«reconstruction»).
- An increase in funding for research on causality and treatment is recommended.
- Collection and dissemination of experience-based knowledge will be facilitated amongst other things through regional conferences of experience.
- The creation of a national treatment-/competence-service for CFS/ME for a limited time is considerated.
- The biobank at Oslo University Hospital – Aker will be closely related to the national service.
- It is recommended that ambulant/outpatient-teams is being created for children, youth and adults in all health regions.
- It is recommended that an effort is started to develop good models for how kids as relatives/next of kin should be given follow-up.
- It is recommended regional polyclinic for CFS/ME.
- It is recommended rehabilitation services built on the experiences and competence from amongst others Sølvskottberget.
- It is recommended regional Learning- and coping-courses for patients and next of kin.
- It is recommended to extend the national Information Telephone Service for CFS/ME.