INGEN PENGER: Den nasjonale ME studien som legene ved Haukeland universitetssykehus, Olav Melle (t.h.) og Øystein Fluge planlegger fikk ingen midler fra Forskningsrådet.  (Foto: Barbro Eikesdal/ TV 2)
INGEN PENGER: Den nasjonale ME studien som legene ved Haukeland universitetssykehus, Olav Melle (t.h.) og Øystein Fluge planlegger fikk ingen midler fra Forskningsrådet. (Foto: Barbro Eikesdal/ TV 2)

English version: Norwegian research breakthrough can solve CFS-mystery

Two oncologists in the city of Bergen in Norway have recently discovered a possible treatment for Chronic Fatigue Syndrome. The drug that they administered improved the condition of two out of three of the patients treated. Several patients were healed.

Denne artikkelen er over ett år gammel, og kan inneholde utdatert informasjon.

The breakthrough, published today in the medical journal PLOS one, can provide answers to CFS-patients concerning what causes the mysterious disease and how it can be treated.

“We definitely see an effect. There is hope,” states professor and head of oncology at Haukeland University Hospital, Olav Mella to the TV 2 News.

TV 2 has exclusive access to the research paper that came out in the medical journal PLOS one. Mella and his colleague, attending MD Øystein Fluge, have completed a double-blind study on 30 Norwegian CFS-patients.

The results are sensational. Two out of three of the patients experienced major improvement, while some experienced a full recovery.

New status to CFS-patients

I addition to providing hope to millions of CFS-patients concerning treatment, the MDs are giving the patients, as a group, new status.

The two doctors say the results indicate that CFS is in fact a somatic decease.

"We think that CFS is an autoimmune decease. The immune system has a central role in this," they say to TV 2 News.

Attracts international attention

The discovery has already attracted international attention. However, the news wasn´t released to the public until today, after the medical journal finally lifted the embargo.

Mella and Fluge presented their results as early as in May at a CFS-conference in London. At the conference, reporting restrictions were imposed upon the audience. Following the conference, the doctors have been contacted by several foreign doctors and researchers who attended the London-meeting.

Cancer-drug against CFS

The two Norwegians are the first two doctors in the world to have found that the cancer-drug Rituximab has very good effects upon CFS.

Each year the disease, which has an unknown etiology, ruins the lives of millions of people worldwide. In Norway alone it is estimated that 15.000 people have CFS.

A fortunate conjuncture

Professor Mella and attending MD Fluge have basically stumbled over what could become one of the biggest breakthroughs in the field of CFS.

A patient with Hodgkin’s lymphoma also had the diagnosis CFS. To fight the cancer, the patient was given amongst other treatments, the antibody Rituximab. After a few weeks the patient’s condition regarding CFS-symptoms suddenly improved.

“Completely surprisingly, to both us and the patient, the CFS-symptoms were gone after six to eight weeks after the treatment,” says Fluge.

First in the world

Through a so-called double blind study, the doctors have tested the drug which is normally used in cancer treatment on patients who had CFS. There was a total of 30 people in the study.

Half of the patients received saline, while the other half received Rituximab. No one knew who received which of these two, including the doctors or the nurses.

“The group was split up by the pharmacist who drew lots. The drug and the saline containers were double bagged in red plastic. This was done so no one would see who got what,” says Fluge.

In the group that received Rituximab, ten out of 15 had a significant positive effect. Nine of these had what the doctors characterize as a significant improvement.

Amongst those who received the placebo, only two had a measureable improvement. Only one of these two experienced what is characterized as a strong improvement.

In medical terms these results are considered to be good.

Amongst the patients that experienced effects from the drug, the transformations were enormous. They experienced a dramatic improvement in their symptoms. For some patients, the symptoms completely vanished.

The study did however show that the duration of the effect varies. Most patients have experienced relapse. Meanwhile, the doctors are now experimenting with continued treatments intended to maintain the effect. These treatments appear to be working.

Could transform lives

Some might consider administering a cancer drug to CFS patients to be irresponsible. However, Mella and Fluge point out that the CFS patients in some cases are so sick that they are chained to the bed most of the day.

“When we have cancer patients that are as sick as many of these patients are, they have a very short life expectancy. That says a lot about the quality of life for many of them.”

Professor Mella is convinced that the possible treatment of CFS patients can have tremendous significance.

“Knowing that CFS each year costs society about nine billion dollars, that is in the US alone, says a lot about the colossal costs involved. I addition you have the patients expenses. However, even more important is the fact that the quality of live for millions of patients, worldwide, can dramatically improve.”

Offered therapy

Currently there is no test to set the CFS diagnoses. Being diagnosed with CFS results from ruling out all other possible diseases.

In other words, today there is no cure or treatment for CFS patients in the Norwegian health system.

People who get the diagnoses are being offered therapy and courses to learn how to live with the decease.

While several private clinics and individuals offer alternative treatments, no one has so far been able to document that their (often very costly treatments) actually have an effect.

Think they know what causes CFS

There have been several theories about what causes CFS. Still the research community has not been able to come to a conclusion.

The core of the matter is the question of whether CFS is a physiological or psychological condition. In Norway, the latter explanation has been the prominent one.

A Norwegian survey shows that 52 percent of Norwegian health caretakers believe that CFS is a psychological condition.

In the last couple of years, theories about CFS being a physiological condition have gained more impact. Now it looks as if the researchers have taken a huge step towards confirming this theory.

After having seen the effect which Rituximab produced in the majority of the patients in the study, their theory is that CFS is an autoimmune decease.

In short that means that the body’s own immune system attacks the body’s own cells.

Other researchers have on previous occasions indicated that CFS is an autoimmune decease. Followign this study with Rituximab in Bergen there is now, for the first time, evidence that supports this theory.

“The results show that the immune apparatus plays a central role. We still haven’t found the breaking in point. The fact that the patient has an effect of the drug, might help us. However there is quite a lot of lab work that remains,” says professor Mella.

Many people will probably read this report and wonder: “how can I, or someone I know, get this treatment?”

“They will have to wait. First of all there needs to be bigger studies. We definitely see that there is an effect. We will find a treatment, however it might still be years until this can be offered to all patients with this decease,” says Mella.

Both Mella and Fluge think that this is the first step on the road to finding a treatment for these patients and also providing the correct diagnosis.