To the Oslo Chronic Fatigue Consortium:
Enough is enough

Shortly after the Covid pandemic was declared over, the Oslo Chronic Fatigue Consortium (OCFC) was established. The consortium offers an 'alternative view of chronic fatigue syndromes, including post-Covid conditions.'

This 'alternative view' is based on the idea that the aftereffects of a viral infection are not due to disease mechanisms triggered by the virus, but by so-called 'predictive processes.' In other words: that the symptoms are psychosomatic, and therefore can be cured with cognitive therapy.

They present this as something new, but in reality, this consortium and their theories have existed for many years, albeit more informally.

Looking for evidence to support their own theory

As someone suffering from Long Covid, I have read studies from researchers affiliated with the Oslo Chronic Fatigue Consortium with great interest, but I still don't think I've read a single study from members of the consortium without finding something that seems off. This makes me question what the actual purpose of this research is.

The studies are mainly observational studies (studies of groups usually followed over time) or review studies (analyses of several studies considered together).

The starting point for the studies is the theory that illnesses triggered by viruses, such as chronic fatigue syndrome (CFS/ME) and Long Covid, are psychosomatic.

But in the studies, an open and exploratory method is not used to strengthen or weaken the theory. The researchers cast a wide net and look for evidence that can support their explanation and weaken a biomedical causal explanation.

And to make things even more confusing, they ignore all facts that do not support their theory. It's a bit like saying I'm right because you're wrong sometimes. Doesn't that seem off?

Contradicts the findings

In the so-called Loteca study, the article author claims that the findings showed that 'persistent symptoms and disability that characterise PCC (Long Covid) are associated with factors other than SARS-CoV-2 infection, including psychosocial factors.'

But this does not align with the findings.

Admittedly, the study shows that some of the adolescents who had not been infected with Covid-19 also experienced symptoms characteristic of Long Covid. For example, they were worried and felt fatigued during a period when society was shut down due to a pandemic. However, the data also showed that those who had been infected had a greater number of symptoms and more severe symptoms than those who were not infected.

Methodological blunder

In addition to the observational studies, members of OCFC have published some clinical studies. These studies seem even more questionable. It's as if the conclusion was written in advance. The study on cognitive therapy at the Coastal Hospital (the SIPCOV study) is an example of this. 

The study was essentially an experiment to see what would happen with patients if they were convinced that their symptoms were harmless.

The method involved getting patients to believe that the symptoms were due to so-called 'predictive processing,' that there was no underlying physical damage, and that they could therefore safely be active without worrying about getting worse. 

Then the patients were followed up by physiotherapists, who were not supposed to provide physiotherapy, but to repeat to the patients that they should not put too much emphasis on their symptoms.

The result of the study showed that this method had no effect. The required effect threshold was set at 10 points, but the result showed 9.2.

There was also a high dropout rate in the study, which further weakens its reliability. Despite this, the article's author concluded that the study showed the method was both effective and safe; they even went to the media to spread the good news.

This was so off-base that journalist and public health expert David Tuller (who lectures at the University of California, Berkeley Center for Global Public Health) sat down and wrote a lengthy critique of the study.

First find the cause, then the cure

The biomedical research I have read is different.

It uses deductive method to check whether a hypothesis holds up. Hypotheses that turn out to be wrong are discarded. The causal relationships that can be proven, on the other hand, are preserved.

Many findings have been made, and the collection of objective, evidence-based biological markers for virus-induced illness is beginning to grow large.

The article Long COVID science, research and policy, written by world-leading researchers in epidemiology and immunobiology, summarises the research and offers guidance on the way forward.

The goal of the research is to be able to explain the disease mechanism. Only when the cause is known can a cure that works be found.

Cognitive therapy is not the problem

I have noticed that Oslo Chronic Fatigue Consortium justifies its undocumented and persistent explanation of virus-induced illness by saying it gives patients hope.

As a patient, I find neither the illness description nor the methods promoted by OCFC give me any sense of hope. I don’t see myself reflected in their approach, and I can’t see how it would be of any help to me.

I know the patient group well, and I know that the vast majority of patients do not relate to the explanation that our symptoms are in our heads and that we get better by thinking we are not sick.

I would like to add that if the members of the consortium were willing to approach this with an open mind and lend me an ear, I could tell them that several patients have told me they benefit from cognitive therapy. Many patients need someone to talk to about how to cope with the illness.

There is nothing inherently wrong with cognitive therapy, but with the content OCFC has chosen to give the cognitive therapy.

Enough now?

Research is expensive. It doesn’t just take up the time of researchers, but also the time of other hospital staff.

The studies conducted by OCFC members have been awarded significant research funding over the past 15-20 years. It amounts to several tens of millions. While health research is essential, it should not serve the interests of researchers alone. It must uphold high ethical standards and aim to promote health, improve quality of life, and contribute to a better future for society as a whole. 

A lot of research has already been conducted on methods based on a psychosomatic understanding of virus-induced illness, but the research has shown that these methods have little or no effect.

Is it likely that more research into this theory will improve the health of those affected by virus-induced illness? And is the research conducted by the Oslo Chronic Fatigue Consortium socially beneficial?

Or is it perhaps time to say that enough is enough?

• Read the response from Oslo Chronic Fatigue Consortium here: Long Covid is neither psychological nor physical

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Translated by Alette Bjordal Gjellesvik

Read the Norwegian version of this article on forskersonen.no