🌍 News from Norway

Study rejected
Research in Norway
Survey
Patient care at Røysumtunet
The Education Project

Study rejected

One of the most important news items is that the Controversial Study on ME Patients has been rejected by NEM (The National Committee for Medical and Health Research Ethics)

The Norwegian ME Association, other organisations, scientists and other stakeholders contributed ahead of the decision.

The trial was accepted by REK (The Regional Committee), but the appeal from The Norwegian ME Association and The ME Association in Oslo/Akershus was accepted by the National Committee.

The trial was based on the Lightning process. The decision is final and based on:

Conflict of interest

NEM believes that it is a problem that the selection appears to be based on subjective assessments

No objective primary outcomes

Etc.

For more info read the blog of Nina Steinkopf.


Research in Norway

The activity regarding research initiatives is now based on several universities in Norway. An increasing number of scientists is being  involved in the trials. Due to Covid-19, some projects are delayed, but we have noticed several publications during 2021.

Some of the most important publications in 2021

A map of metabolic phenotypes in patients with myalgic encephalomyelitis/chronic fatigue syndrome (open access)

The study provides a map of metabolic alterations occurring in patients with ME/CFS. We find that the observed changes are compatible with elevated energy strain, for instance, caused by tissue hypoxia on exertion. The potential roles of specific pathways will have to be validated and explored in further targeted studies.

Fine mapping of the major histocompatibility complex (MHC) in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suggests involvement of both HLA class I and class II loci (open access)

Asgeir Lande et.al. published an important article in 2020 and they have continued their work in 2021. One of the projects has been published in 2021.

Conclusion: results implicate the involvement of the MHC, and in particular the HLA-DQB1 gene, in ME/CFS.

Reduced Endothelial Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome–Results From Open-Label Cyclophosphamide Intervention Study (open access)

Conclusions: Patients with ME/CFS had reduced endothelial function affecting both large and small vessels compared to healthy controls. Changes in endothelial function did not follow clinical responses during follow-up after cyclophosphamide IV intervention.

Comeback Study – Delayed, but in progress

Fecal microbiota transplant in chronic fatigue syndrome – an RCT

The study is funded by the Research Council of Norway and some support from The Norwegian ME Association.

The study is planned to include a total of 80 participants. 40 of the participants receive placebo treatment and 40 receive donor graft. There are two donors in the study, who are young, healthy and normal weight.

Disturbance in intestinal flora

The reason why in this study we have chosen to focus on intestinal flora is that we have previously seen that a disorder of intestinal flora, with leakage of bacterial products, a low-grade response from the immune system and disruption in energy metabolism may be relevant factors in the development of the disease CFS / ME. It is therefore interesting to see if one can restore a normal intestinal flora and thus relieve symptoms and provide improvement in the condition.

Survey

Board member Arild Angelsen, who is also professor of economics at NMBU (Norwegian University of Life Sciences), Assistant Secretary General Trude Schei and medical advisor of the ME association Nayana Geetha Ravi have been working on a pan-European survey, in cooperation with the European umbrella organization EMEA. On the academic day they presented some of the preliminary results. The survey received more than 11,200 responses and is the first of its kind. It was translated into 15 languages, and we received answers from all over Europe.

The median time to get an ME diagnosis in Norway is 4 years. It is two years faster than Sweden and Denmark, but twice as long as in the UK. On average, men are diagnosed one full year faster than women.

The survey also shows that ME sufferers in Norway are more satisfied with health care than ME sufferers in other European countries, even though many have poor experiences. We also found that about half of them reported having “moderate” ME, which means they arehouse-bound. This was very similar in all the countries.

Patient care at Røysumtunet

The Norwegian ME Association has initiated a new treatment option for seriously ill ME patients.

Røysumtunet (a rehabilitation center) offers individually adapted care and care for seriously ill ME patients.

This includes offers such as sound and light shielding, adapted diet and nutritional assistance, activities, coping conversations, necessary medical treatment and symptom relief.

The Education Project

Our regional association in Rogaland County has created a Toolbox with a lot of good information about ME.

The purpose of the Toolbox is to provide information and training on the challenges and facilitation needs for young people with ME.

In order to ensure that the information is handled properly and that the knowledge gained is managed for the benefit of the sick student/user, the person wishing to receive the Toolbox must undergo a course of approximately 1.5 – 2 hours under the auspices of the Norwegian ME Association – Rogaland Fylkeslag. The course is free of charge.

The toolbox also contains a write with more detailed terms and conditions for the use of the material. When disclosing the Toolbox, the recipient undertakes to comply with the terms of the use of the content and to ensure that others who may access the content do not violate the Terms.

This toolbox is also used in Denmark and other countries are interested.

Submitted by Rune Hoddevik

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