A harsh debate about ME in Norway – A personal view from Professor in Pediatrics Ola Didrik Saugstad, mai2018

«The Norwegian debate on ME/CFS has for many years been polarized between those who insist ME is a psychosomatic disease, claiming Cognitive Behavioral therapy (CBT) and Lightening Process (LP) are therapies with effect on this condition.»

For de siste 13 årene har den engelske veledighetsorgansisasjonen Invest in ME, pårørende hvis barn ble rammet av sykdommen Myalgisk Encefalopati (ME), arrangert en internasjonal konferanse for forskere, helsepersonell, pårørende og pasienter. Dette har de siste 13-årene også vært årets event hvor forskere innen biomedisin samles. I Journal of IiMER (Invest in ME Research), mai 2018 kan en lese blant annet abstrakter av noen av innleggene på konferansen og presentasjoner av forskerne, samt aktuelle tema omkring ME-saken. I denne utgaven finner vi også et innlegg med Professor Ola Didrik Saugstad, som prater om ME-debatten i Norge «A harsh debate about ME in Norway – A personal view from one of the participants»

The Norwegian debate on ME/CFS has for many years been polarized between those who insist ME is a psychosomatic disease, claiming Cognitive Behavioral therapy (CBT) and Lightening Process (LP) are therapies with effect on this condition.

A leading voice supporting this view has been Wyller, a paediatrican who made a thesis concluding ME is a stress condition. He therefore performed a study giving ME patients clonidine, a socalled alpha adrenergic agonist which is a medication used to treat high blood pressure. This drug theoretically could block the stress response and Wyller was convinced clonidine would cure ME patients. However, his study did not show any positive effect on his patients.

Instead of considering his hypothesis might be wrong he continued to preach ME could be treated by stress-control and he was a firm defender of the PACE study.

Many health and Child Welfare workers believed in his hypothesis and many young ME patients were forced to attend school and other activities, and the Child Welfare in several cases requested court orders on care takeover. I myself had to appear as a witness against this view in the court on several occasions.

The concept that ME is a disease caused by stress and therefore can be treated by stress control, has therefore been widely accepted in the Norwegian community, in spite of the objection from ME organisations and a few doctors and scientists.

However, after the IOM report was published in 2015 the stress theory has lost ground and its defenders have tried to consolidate and they argue against results obtained by biomedical ME research.

In September 2017 a new public ME debate was kicked off in Norway’s largest newspaper, Aftenposten. During the years there have been many discussions and articles about ME in Norwegian media. However, this time it was different.

The debate became intense, lasted for several weeks and was flavoured with the most hatred personal attacks on those who referred to recent biomedical research and were advocating the view that ME is a somatic disease.

It all started when a new group of 71 persons called “Recovery Norway” wrote an article with the message:

we know how to be cured of ME. Listen to our message”. The network consisted of previous patients or relatives, and some health personnel who recommend CBT and LP to cure ME. By mind control ME patients are able to control their disease the Norwegian public was told by this group. Not only ME could be cured by such mental exercise, a number of other diffuse conditions as fatigue, pain and tinnitus should be treated with these alternative methods. Why doesn’t anyone listen to us and why do so many doubt we previously have had ME and are now cured? the group asked rhetorically.

Four days later September 22nd I wrote as a response with the title: Listen to the ME patients:

“In Aftenposten September 18th there is an interesting article by a group of former ME patients who are now recovered. Why not take advantage of their experience using untraditional and alternative therapies such as LP and CBT? It is unfortunate that the group feel they are disbelieved both regarding their previous ME diagnosis and that they today are cured. We are grateful for every patient who have been healed and obliged to try to learn from their experience and what made their improvement.”

I continued:

“When we discuss ME it is, however, important to know that ME follows phases. Persons who previously were very active and healthy may quickly deteriorate. I have myself the last 10 years or so visited many of the sickest ME patients in Norway in their homes and probably seen more than most.

Many have a condition compatible with encephalitis, and this is exactly what modern research seems to reveal.

ME is an inflammatory condition affecting several organs, also the brain. The immunesystem is activated. Some patients improve spontaneously while others are bedridden through years with great pain. This is where those who claim to have improved from ME may contribute with valuable information.

However, this must be studied systematically. It is not so simple that CBT is curative. Many of the sickest have tried this without effect and even become sicker.”

I then focused on the PACE trial:

“After the big PACE study concerning CBT for ME recently was reanalyzed and torn apart, there seems to be no effect of such therapy for ME.

What is important is not to mix mastering and therapy of the condition. Both CBT and LP may be useful techniques to master challenging life conditions and diseases without curing these.

The authors (Recovery Norway) are wrong and not up to date when they write: ”The debate regarding these problems is often about whether the disease is physical or psychosomatic. Lack of knowledge dominates this field.”

After the report about ME from Institute of Medicine (IOM) in USA was published in 2015, there has been a paradigmatic change in the view regarding ME. It was concluded that ME is a serious physical, chronic and complex multisystem disease which is strongly debilitating and the misconception that the disease is psychogenic or a form of somatization must stop.”

I then referred to a recent study (2016) from the USA with Maureen Hanson as senior author:

“In one study from the Cornell University in the USA the researchers were able to identify biochemical and biological deviations in ME patients, which resulted in the following statement:

“Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.» (quote by Maureen Hanson in Medical News Today, Tuesday 28 June 2016).

I continued:

“It is the supporters of the concept that ME is psychogenic who maintain to underline the lack of knowledge regarding ME. I agree with the Norwegian Research Council which supports biomedical ME research in line with the US effort to find treatment for the disease. Psychosomatic research has not brought us closer to understanding of ME and may have contributed to a prevention of development through years.”

 

I did not, however want to disregard the Recovery Norway group and therefore added:

“I belong to those who welcome the initiative of the group. It is useful to obtain information on why some were cured and others not. At the same time the group’s credibility is weakened by lumping together several poorly explained conditions such as fatigue, pain and tinnitus. One problem for ME patients has been that the health care system has not listened to the sickest, nor even cared to examine them. We must listen to the advice both from those who have improved and from those who still have not”.

This article from me resulted in an outcry from those who supported the concept of ME as a psychogenic disease. Two neurologists from the University Hospital in Bergen, one even a professor, wrote that I was misusing my professor title.” Saugstad is exploiting his medical authority to oppress patients who have been cured and want to share their experience.” These two neurologists told us they had treated ME patients for years and never or at least only very rarely, seen any trace of inflammation in the central nervous system.

.I replied by referring to Mady Hornig and co-worker’s recent article (2017) showing ME patients have an immune signature in Cerebrospinal fluid reflecting the central nervous system and the study of Nakatomi Y et al (2014) indicating ME patients have activated immunecells in the brain. I also quoted Harvard Professor Komaroff who commented that if these findings were reproduced it indicates that ME patients have a low graded inflammation in the brain. A Norwegian professor of immunology confirmed that my comments were relevant. The two neurologists never replied.

.Wyller wrote a commentary:

“Saugstad’s claims are misleading. That the immune-system is activated in ME does not mean ME is an inflammatory process. The immune-system is also activated in depressions, social stress and loneliness. Does Saugstad mean these are inflammatory conditions as well?”.

Wyller is a firm supporter of the PACE study and wrote:

“The PACE study showed that CBT has positive effect on ME. The study has been criticized but the main conclusion has not been disproven. Another recent study shows equivalent good effect of LP. That mental conditions may contribute to ME is documented well for instance by MRI pictures of the brain. This does not mean that the disease is psychogenic, but that the mechanisms are complex and both mental and somatic factors may play a role.”

And Wyller continued:

“Professor Saugstad introduces himself as an ME expert but has never carried out ME research himself. He is stuck in an old fashioned distinction between “body and mind” and is followed by a small but vocal group of ME patients who are fighting frantically against the concept that “the mind” has anything to do with this matter.” Wyller concluded his article: “I beg new patients, relatives, health workers – don’t listen to this pessimistic outdated message!

Instead listen to the majority of patients – many have been completely cured – who make use of modern and documented therapies.”

At this stage of the debate a number of doctors, ME patients and relatives had contributed to the debate with their own opinions and experiences. Wyller did not receive much support.

In my reply I underlined I have never pretended to be an ME expert. But I wondered why some people became so emotional because I mentioned recent publications in the field. Nobody dared to attack the IOM report, instead they attacked me, a “messenger” informing the public about this ground breaking report.

I was worried of the fact that those who went against me seemed to be frightened of new data and not willing to discuss recent international research results. I argued that the PACE study had not shown significant improvement for CBT and the recent Smile study concerning LP had profound weaknesses, only 30% of the eligible patients were enrolled in the study and the sickest ME patients had not been included.

I also wrote I was surprised that Wyller characterized ME patients as a small and vocal group. After all, the Norwegian ME association has 4000 members and few of these support Wyller.

“Fortunately it is rare for such disrespect from a doctor for the patients he is supposed to care for is uttered so clearly”, I wrote.

Further, I wondered how Wyller could characterize international research in the field as old-fashioned and outdated.

“Perhaps these new findings are threatening to his psychosomatic position Wyller is basing his academic career, a paradigm which is quickly losing ground?

However, for the ME patients this development gives hope for the future” was my conclusion.

Wyller’s next move came a few days later:

False information about ME may scare patients from documented treatment”.

His article illustrated his views.

I therefore refer extensively to parts of it:

“Saugstad is a highly recognized researcher in neonatal medicine. It is therefore surprising that he, in the ME debate, breaks several rules for scientific reasoning and dissemination. That inflammation detected in the central nervous system of ME patients does not prove that inflammation is the cause of fatigue. To illustrate this point from another area: That patients with lungcancer often have yellow fingers does not implicate that yellow fingers are causing cancer (both yellow fingers and cancer may be caused by smoking).

Saugstad has not published his research findings. Saugstad writes that he has in the last years built up a strong research group on ME. Why have the findings not yet been published?

Wyller then continued to inform that he had published 25 research articles in the field with a holistic approach to the complex disease that ME is. He then indicated I am biased due to having a close relative with ME. Two Norwegian professors of medicine gave me their support against his emotional attack. In his next reply he continued to attack these two.

As mentioned Wyller is a firm defender of the PACE study and when the results from the SMILE study came he embraced these results – he had for years supported LP and CBT for ME.

Why not try them – they do not have any adverse effects, he suggested. I replied this is wrong. “Several ME patients report adverse effects of these two regimes. The major distinction in the understanding of ME is perhaps between those who understand this and those who do not”.

Recovery Norway also attacked me claiming that I told ME patients they have an inflammation in the brain. This is definitely wrong I replied, I never diagnose ME patients I only refer to the scientific literature when I am asked.

In my final statement I informed that unfortunately Recovery Norway had “forgotten” to disclose that several of their members were heavily involved financially in LP as LP instructors.

This debate probably represents a watershed in the Norwegian ME debate and understanding.

The psychosomatic ME wing had previously given the impression that they often are harassed by aggressive patients and relatives.

They have also spread the information that those who support biomedical findings are afraid of new results. The debate demonstrated that the opposite is the case.

The psychosomatic lobby’s reaction to new biomedical information was by resorting to personal and emotional attacks on us who had a different view.

Their disrespect for the patients they are supposed to serve shocked many of the neutral bystanders.

The debate was probably initiated due to the psychosomatic wing rapidly losing ground after the publication of the IOM report, the new emphasis on biomedical ME research by NIH and also the Norwegian Research Council, the CDC’s change in attitude to CBT, and the reanalysis of the PACE study showing minimal if any effect of CBT.

Several of the psychosomatic supporters had invested their prestige and based their whole career on findings that supported their view. I understand it must be painful to see how the basis of their theory quickly eroded.

This also explains their uncritical embrace of the Smile study.

During the debate which lasted many weeks I received overwhelming support from more than 1000 persons in the newspaper and on social media.

Ola Didrik Saugstad, MD, PhD, FRCPE
Proferssor (em) of Pediatrics
University of Oslo


Kommentar:

En oversikt av mediadebatten, kan du finne i bloggposten .På ME-fronten bokstavlig talt!.

Debate articles mention i Saugstad text:

Innlegg Aftenposten september-oktober 2017


«As mentioned Wyller is a firm defender of the PACE study and when the results from the SMILE study came he embraced these results – he had for years supported LP and CBT for ME.» – Saugstad

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«During the debate which lasted many weeks I received overwhelming support from more than 1000 persons in the newspaper and on social media.» -Saugstad

Read blogpost Støtt hjelperne! | Nina E. Steinkopf, 7okt2017


 

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