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 (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Outdated hypothesis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 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 medically knowledgeable 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.

NAV sets extra strict requirements for ME patients. In an instruction to the Norwegian Social Security Act on disability benefits, it is specifically stated that for drug addicts and people with long-term fatigue without a known cause, including ME, «special in-depth assessments» are required when applying for disability benefits. It is known that NAV’s activity requirements are of little help to ME sufferers or even make the patients deteriorate by requiring work trials or specific «treatments».

The Norwegian research project «Individuals and families affected by CFS/ME: Population characteristics, service use and needs»  has found that patients are broken down by the system. Last autumn, Fafo researcher Anne Kielland told the news agency TV2: – We have examples in our material that can hardly be described as anything other than pure abuse.

In November 2022, the political party the Red Party won approval in the Norwegian Parliament for a representative’s proposal to improve ME patients’ social security rights.

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 the Directorate of Labor and Welfare and asked Hermansen 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)

Finland

A similar seminar was held at Helsinki University Hospital (HUS) in Finland on 16th March this year. Of the 6 speakers, 5 also took part in the seminar in Oslo in October 2022. 100 people were present, mainly doctors, among them were representatives from the Finnish NAV and pension insurance companies.

A Finnish group of health professionals and ME- and Long Covid patients report that the primary message was that patients should be guided to think that their symptoms are caused by their own harmful thoughts and behavioral patterns. According to the speakers, patients can be completely cured by modifying these patterns. In presentations discussing Long Covid treatment, personal opinions and attitudes of the speakers completely overrode the scientific consensus, guidelines and thousands of studies made on the subject. Read more here: Opinions took over science at HUS Long Covid symposium.

Members of Parliament demand an explanation

The Finnish weekly medical newspaper Mediuutiset writes on 28 March 2023 that four members of parliament have sent a request to HUS’ management for a clarification regarding the Long Covid symposium. They are asking for an explanation that it has potentially caused extensive harm and put patient safety at risk.

«According to the MPs, it is irresponsible to organize training aimed at a wide audience of doctors, which promotes treatment methods that are based on faith.» (my translation)

«We ask the HUS management to present an account of the scientific arguments behind the psychosocial approach and a justification for why HUS has chosen a policy for the treatment of Long-Covid and ME/CFS that deviates significantly from the most important international institutes’ guidelines and WHO definitions », write MPs Tanus and Niikko. Read the article here: https://www.mediuutiset.fi/uutiset/mu/13b53c1a-44ed-44f2-9fc3-235e6de71be6

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.

NAV is recruiting participants for the study from among its users. The study, which is rigged for a positive result, aims to influence the understanding of the disease and to «save the municipalities resources».

The Norwegian Fafo researcher Anne Kielland and Sintef researcher Line Melby write in the journal Psykologisk: «Recruitment of vulnerable research participants through NAV is an ethical problem». (Norwegian text)

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.

The purpose of RN is to create an understanding of ME and Long Covid as «medically unexplained symptoms». Membership in RN is only for selected people: You must have recovered by changing your thoughts and behaviour. ME patients, those who are still ill, are not allowed to become members of the RN.

Recovery Norway is actively used to influence the authorities and functions as a PR agency for researchers. In just under 2 years, NOK 16 million was allocated for studies where RN will contribute with «user participation». Head of RN, MD Henrik Vogt, was one of the speakers at the seminar in October. Vogt is deeply concerned that children with Long Covid can be harmed by their mothers’ focus on symptoms.

LP instructor Live Landmark also participated. She is a research fellow in the LP study and will both approve the inclusion of, as well as treat the ME patients. She claimed in 2015 that children with ME can recover if only their mothers are able to turn their eyes to their own fear and despair. (Norwegian text)

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. Despite year-long, major protests from the patient group, Health Minister Ingvild Kjerkol recently extended Helland’s mission by another 5 years. Read more in Dagens Medisin: ME patients must get a new Competence Unit (Norwegian  text)

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.

Quackery in NAV?

Recently, it became known that NAV Oslo refers ME patients to the private rehabilitation center Idrettens Helsesenter, which offers courses for CFS/ME. The course refers to coaches and both RN and LP are mentioned as relevant measures: Quackery against ME in NAV. (Norwegian text)

LP can be very harmful for ME sufferers. Psychologist Bente Dahl compares LP to conversion therapy and the healing of gays. In 2011, NRK wrote about a 13-year-old who attempted suicide after attending an LP course. (Norwegian texts).

The guidelines

When Kjerkol became Minister of Health, I wrote an op ed in Dagens Medisin and asked her to take action quickly, and to ensure that we get a new guideline for ME according to strict diagnostic criteria. We have been treated incorrectly for 30 years and the Norwegian Directorate of Health’s guideline for CFS/ME is outdated.

The Norwegian Directorate of Health has still not decided whether the guideline, which was published in 2013, should be updated. Apparently, hard work behind the scenes aims to prevent us from getting a new guideline in line with the American and British ones.

«The Truth»

It is not yet known who funded the seminar at UiO or why this degree of secrecy was approved.

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 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.

Thank you to those of you who requested access to the documents relating to the seminar – and didn’t give up.

Written by

Nina E. Steinkopf

Former HSEQ Chief Executive

Now; ME patient and writer