Professor Carmen Scheibenbogen: Medical breakthrough in Chronic Fatigue Syndrome

bergento.no/news: Chronic fatigue syndrome (CFS) is a puzzling medical condition, and one that many people suffer from. Its cause is unknown, and until now there has been no effective treatment for it. Now, a team of Norwegian researchers have had their first treatment breakthrough, using medication from the sphere of cancer medicine. Carmen Scheibenbogen from the Institute of Medical Immunology at Berlin Charité has had many years of experience with the mysterious medical condition, and is convinced that the Norwegian study is a decisive step forward.

“This is important news, especially for patients in Germany, as the situation that CFS patients encounter here is particularly bad”, she says.

Chronic fatigue syndrome (CFS) is a medical condition that is not well known, although it frequently occurs. It is said that 300.000 people in Germany suffer from it. Its symptoms are mental and physical exhaustion; sleep disorders, permanent fatigue, impaired concentration and memory, joint- and muscle pains, a flu-like sore throat and headaches. The condition worsens after exertions. In a severe clinical course, the patient becomes unable to work and can hardly leave his bed. Owing to its non-specific symptoms, CFS is hard to diagnose, and is often regarded as a mental ailment.

Two thirds of patients improved
A new patient study from Haukeland University Hospital in Bergen, Norway, now verifies that the syndrome involves a physical dysfunction for which there is a promising treatment. In the study, CFS patients were treated with the anti-cancer agent rituximab and observed for twelve months. Rituximab was developed for use in chemotherapy for lymph gland cancer, as it incapacitates B cells in the lymphatic system. Two thirds of the CFS patients reported an improved health condition, whereas only 13 per cent of the patients in the placebo control group reported amelioration. A total of 30 randomly selected patients took part in the study. Neither the patients nor the physicians knew whether treatment took place with rituximab or with a placebo. Haukeland University Hospital is currently preparing a second study on a larger scale.

Professor Carmen Scheibenbogen, Deputy Director of the Institute of Medical Immunology at the Charité University Hospital in Berlin, describes the results of the CFS study as a “breakthrough”: “This is a very important first step. For the first time, a therapeutic study has been conducted with medication that was originally applied to the immune system, and which proved effective for a majority of the patients”, she says. The internist has been head of the Immunodeficiency Outpatient Clinic at Charité University Hospital for four years. Every fourth patient there suffers from chronic fatigue syndrome. Patients who deal with severe infections often come to the Immunodeficiency Outpatient Clinic. “Patients with CFS frequently have more infections,” Scheibenbogen says. “CFS usually starts with an infection. We also find immunodeficiencies more often in patients with CFS. That is why they come to us.”

Physicians do not feel responsibility
Professor Scheibenbogen and her staff at Charité, hold a unique position and have extensive experience and knowledge about CFS. “The situation for CFS patients is disadvantageous compared to other illnesses. In Germany, there are no physicians who feel responsibility for this; if anyone does, they are most likely psychiatrists. There are no centres, at the universities, for example, where the staff has experience with CFS patients and in dealing with the illness. Even in large clinics, there is no consultation for CFS patients. There are no specialists who are well-versed in this topic. What we do here at the Immunodeficiency Outpatient Clinic is an exception.”

 “The treatment of many CFS patients is merely symptom-oriented”, says Scheibenbogen. Pains or sleep disorders are treated, nothing more. At her clinic, treatment goes beyond that. “We try to assess the immunodeficiency. We believe that for many patients, a chronic infection triggers these symptoms, and we attempt to treat that infection specifically.”


“We have not seen anything comparable to this”

Haukeland University Hospital’s study also applies to the immune system. The B cells that are attacked by the anti-cancer agent rituximab play an important role in immunoregulation. “Rituximab has many effects”, explains Scheibenbogen. “We know that it temporarily incapacitates a portion of B cells. But we do not know exactly what this means in regard to the cause of chronic fatigue syndrome.” From her point of view, there are two options. “One option would be that it involves an autoimmune disease in which the immune system is triggered by an infection, to which it responds exaggeratedly or wrongly. Autoimmune diseases can be treated by removing the B cells. The other hypothesis is that the Epstein-Barr virus is a frequent trigger of this medical condition. The Epstein-Barr virus specifically affects B cells. If one destroys B cells, the Epstein-Barr virus’ reservoir is also removed. This is the hypothesis that we favour. Even if one cannot clarify the cause of CFS at the moment, it is decisive for patients and their treatment that rituximab is effective.”