ME, Rikshospitalet | Doctors at Rikshospitalet complained about ME claims

On 25 February, Nettavisen wrote an article entitled “Taking a deal with ME attitudes: – Some people are provoked when they hear they can get well”.

The case has upset the minds of several ME sufferers.

One of these is Henrik Jørgensen, who has suffered from ME since 2019. He believes the statements of paediatricians Ingrid Helland and Maria Pedersen undermine the disease.

He has now lodged a complaint against the two doctors, Rikshospitalet and the national expertise service to the State Administrator in Oslo and Viken.

Strong reactions

Jørgensen has never been treated at Rikshospitalet. Nor does he have personal experience with Pedersen and Helland or the ME treatment Rikshospitalet provides patients.

– Rikshospitalet has stated on a general basis in an article in Nettavisen 25/02/2024 and I have lodged a complaint with Rikshospitalet, Kompetansjenesten, Helland and Pedersen to the State Administrator on the basis of the controversial statements, which cannot possibly be true, he says to Nettavisen.

The state administrator in Oslo and Viken informs Nettavisen that they have not made a decision on Jørgensen’s complaint, but that this will be done in Week 16.

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In the article, among other things, the two paediatricians at Rikshospitalet state that the prognosis for children and young people is very good, and that adults with ME can also recover completely.

– Of the several hundred children and young people I have visited, there are only a few who have not improved in the time I have followed them. The vast majority have become significantly healthier and many have become completely healthy, Helland stated in the article.

Jørgensen reacts to that.

– International ME research shows that only around five percent get well on their own. I don’t understand where the statements they make are rooted, he tells Nettavisen.

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Assistant general secretary of the ME association, Trude Schei, tells Nettavisen that the study is a compilation study based on smaller studies. Thus, it has clear limitations on how good it is.

– But we have nothing better.

In a reply from Helland to Jørgensen, which Nettavisen has gained access to, the pediatrician replies that the statements originate from the two paediatricians’ experience from clinical practice at Rikshospitalet.

Silent about the complaint

Doctor Maria Pedersen says that she does not want to comment on the specific complaint, but has caught up with the storm that has followed the case.

– First of all, I must say that there has been a lot of positive feedback as well. It is understandable that there will be reactions. There is a group of patients who are very troubled and have severe functional decline, as stated in the article. Many have experienced not receiving good treatment, but I think the patients would have benefited from a debate that focuses on which measures work and how the patients can recover, says Pedersen.

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– We do not offer good enough treatment for this patient group. They do not get what they deserve from the public. For example, there is no standard offer of cognitive therapy in the public health system yet, even though the studies that have shown very good effects in children and young people are starting to be a few years old.

– Cognitive therapy is met with great skepticism by the patient group, is it right to introduce it then?

– The patients I meet are not negative about trying treatment. They want to do what they can to get better and the vast majority are not concerned with whether it is medicine or other measures, they just want to get well.

Afraid scientists refuse

She fears that the pressure and feedback she and research colleagues receive in the ME debate may lead to fewer people wanting to speak out about research.

– Of course, it affects me and everyone when there is so much pressure after any media report or research finding. This can lead to a reluctance to speak freely for fear of receiving complaints or negative feedback.

– Do you refuse?

– Both yes and no. I know some messages create more noise and that’s no fun. At the same time, I think it is so important that this patient group should get the best. I want them to gain knowledge about how to understand the disease and how to get better. When you see what it does to them and their family, you really want to help.

The ME association: – We have little confidence in the service

Trude Schei in the ME association, believes the storm of complaints and the complaint sent to the State Administrator is a clear expression of the frustration the patient group feels after many years of “being ignored and met with distrust”

– What I really reacted to in that article is that they speak very confidently without having any research on the forecasts, says Schei to Nettavisen.

– But these are paediatricians with 10 years’ experience in the field, aren’t their experiences valuable to take with them?

– They can of course speak about their own experience, but how large and representative is that experience? How representative are their findings? Subjective experiences are not research. In our surveys, patients are unsatisfied with Rikshospitalet’s children’s department, and feel that it does not have good expertise in ME. So here some of the patient’s experience conflicts with the doctor’s.

– What do you think about patients complaining to the State Administrator, is it the right focus to improve things?

– This has been done by an individual, he is not necessarily representative of the patient group. The ME association has nothing to do with this complaint, and always takes the official route.

– The complaint must be seen as a reaction to deep and long-lasting frustration, a frustration that is shared by large parts of the patient group.

Schei says that the ME association understands the frustration of Jørgensen and other patients, when information is disseminated that conflicts with the patients’ own experiences from the expertise service.

– The ME association also finds it extremely difficult to get there with the knowledge we have, and the association eventually has little confidence in the service.

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