Chief physician for the Norwegian Labour and Welfare Administration (NAV) Marit Hermansen attended the secret ME seminar at the University of Oslo in October 2022. It is problematic when people with power meet in secret to discuss the «truth» about sick people’s lives and health.
On 13th October 2022, a secret seminar was held at the University of Oslo, Norway (UiO). The seminar was organized by professor of psychology Silje Endresen Reme.
The seminar was only for specially invited guests and it was secret who participated according to the “Chatham house rule”. The hand-picked researchers wanted to “contribute thru science and collegial collaboration to share knowledge and experience towards the “truth” in concern for the people that experience long term symptoms and reduced function after an infection.
“The initial meeting is to get together, share information, increase our network, and think better together.” See the invitation here.
Outdated hypothesis
For a long time there was a professional dispute about the causal mechanisms of ME. That changed in 2015 when US health authorities – after reviewing 9,000 research articles – determined that ME is a biomedical disease. In 2021, British health authorities did the same and more and more countries are following suit.
Most of the 50 who attended the seminar in October stick to a psychosocial approach. The hypothesis is that the psyche affects the body to such a large extent that personality, thoughts, feelings and behavior make people feel ill. Like a «sustained stress arousal» according to Prof. Vegard B.B. Wyller’s hypothesis from 2009. Wyller, who is the one in Norway who has been awarded the most research funds in the ME field, also researches Long Covid. Here from a presentation in 2022:
This is contrary to biomedical research, which has made substantial progress in identifying various pathophysiological changes and risk factors and in characterizing the illness. See Nature: Long COVID: major findings, mechanisms and recommendations
The seminar’s program included themes such as illness behaviour, (Why people find it difficult to accept psychological cause and treatment, Changed illness narrative and » Patient power, changing the public narrative, ethics and public health».
By redefining illnesses as psychosomatic and «behavioural», one can leave the «treatment» to coaches and others who believe that recovery depends on motivation and willingness to put in the effort.
The chief physician in NAV
Among the participants in the secret seminar was Georg Espolin Johnsen. He is a former consulting doctor at the Labour and Welfare Administration (NAV) and a legal member of the National Insurance Court. In 2020, he told the newspaper VG that «ME is a fashion diagnosis» (Norwegian text).
Former president of the Norwegian Medical Association Marit Hermansen was also present. Hermansen is now chief physician at NAV, the body which in many cases overrules the assessments of GPs and specialists.
Recent research?
When the Directorate of Health’s guideline for CFS/ME was receiving consultation in 2013, Hermansen went against the nursing advice for the most severe ill ME patients. Marit Hermansen is also head of ethics at the World Medical Association (WMA) and board member of the Health Platform.
I have been in contact with Hermansen and asked her three questions. Hermansen replies:
1. Why did you wish to attend this seminar?
«It is important for NAV to pay attention to the professional discussions about ME. This is a medical condition with an unknown cause and where there are different views on treatment and approach. Therefore, I accepted the invitation to participate in the professional seminar on this matter.»
2. What did you learn at the seminar?
«There is a lot of research into ME, and different research was reviewed at the seminar. It was also an opportunity to meet researchers and debaters from different countries to discuss matters.»
3. How will this knowledge come into practical use in NAV?
«As chief physician in NAV, it is important that I participate in various professional arenas. It is important to be familiar with the public conversation and recent research on topics that concern NAV and our users.» (my translation)
Treatment based on faith
8 of the 50 participants at the seminar in Oslo, including organizer Silje Reme, are project members in the controversial study in which 120 ME patients are to be treated with the alternative method Lightning Process (LP). The method consists of choosing “the pit» or the life you love and saying Stop! to symptoms. In order for the method to work, you have to tell yourself and others that you are recovered.
Contraindicated
In 2021, UK health authorities (NICE) published new guidelines for ME/CFS and specifically warn against offering LP to ME patients. Soon after, 24 Norwegian professionals signed an article in the newspaper Aftenposten protesting against NICE: «The debate about ME is not over«. 11 of these professionals attended the secret seminar.
6 of the seminar participants are also involved in the management of the organization COFFI. COFFI is The Collaborative of Fatigue Following Infection, which was established by, and is chaired by Professor Vegard B.B. Wyller. COFFI was created when the draft guidelines from NICE were put out for consultation in 2020 and as a protest against cognitive behavioral therapy and graded exercise therapy being scrapped as treatment for ME.
At least 19 of the seminar participants have publicly supported the LP organization Recovery Norway (RN). Silje Reme and Egil Fors have supported RN financially. RN was founded by i.a. LP instructor Live Landmark and will contribute with «user participation» to the LP study. RN conducts marketing and lobbying to get the method approved in the public sector.
Secrecy
UiO has objected to freedom of information (FOI) requests for access to the documents relating to the seminar since November 2022, with reference to the Chatham house rule. Now UiO has received criticism from the Joint Complaints Board for this, which has upheld the complaints. Now, among other, the list of participants is public.
Research manager at the Institute of Public Health, Signe Flottorp, attended the seminar but deleted the evidence.
Head of the National Competence Unit for CFS/ME Ingrid B. Helland also participated. She has defining power in the ME field and has refused to disclose her participation in the seminar since December 2022. She still refuses – with the help of lawyer at Oslo University Hospital Camilla Njå – to provide access to the documents in question.
As chief physician, Marit Hermansen has the overall social security medical responsibility in Nav. It is worrying that she is taking part in a secret seminar where the purpose is to promote a one-sided view of illness and alternative treatment, and where access is restricted to specially invited people.
«The Truth»
This is a network that fights for one particular understanding of ME and Long Covid that is contrary to scientific consensus and promotes undocumented treatment methods.
It is not yet known who funded the seminar at UiO or why this degree of secrecy was approved.
It is disturbing when people with power gather in secret meetings with only specifically selected people to discuss the one «truth» about the lives and health of sick people. The participants have made an active choice not to listen to what biomedical research and the vast majority of patients say, but instead choose to gather at a secret seminar to explain why other countries’ health authorities and the patients are wrong.
A secret network has been exposed. It is a scandal that such key figures as Hermansen, Flottorp and Helland took part in the event, and it is a scandal that the University of Oslo was the organiser.
Nina E. Steinkopf, Former HSEQ Chief Executive, Now; ME patient and writer
The ME Global Chronicle 