Journal of IiMER then confronted with the resistance of the medical society to get into this. Investment in medical research is decreasing overall and we are also producing more doctors with differing standard levels of knowledge because they no longer have a scientific background. We have a few written treatment guidelines that should set the minimum level of standard care in primary care and regional hospitals. If patients cannot be treated according to the guidelines then they are referred to the university hospitals. However, the reality today is that, after twenty years, public health care is only provided and available treatment at the university hospitals. In other words, one can only receive evidence based diagnostics and treatments, so if a treatment works but is not in the guidelines one is not entitled to receive this treatment. This makes doctors afraid of regulatory actions (e.g. we had an eleven year old, paralysed girl, who had to be taken to Holland – Rotterdam to get Immunoglobulin-IV treatment.). There is actually written evidence about the use of this therapy in ME but in Finland no one dares to give it or fear of regulatory actions. Doctors who are interested in studying or treating ME/CFS experience the same faith as patients. The doctors lose their credibility, their jobs and jeopardised by the medical establishment. The Finnish health professionals state that the purpose of a health professional is to maintain health, prolong health, heal sick patients and alleviate their suffering. Also in his professional activity he must apply commonly accepted, experience-based, medically acceptable procedures, before giving any medication to a patient which must be continuously updated. Therefore, a research-orientated doctor/scientist may arrive in a contradictory situation, where commonly accepted procedures are more about about promoting health than alleviating suffering of the patient. So what to do? For instance, if an ME patient is misdiagnosed with depression then, unfortunately, they have little expectation other than the increase of exercise, despite the www.investinme.org worsening of symptoms, just in order to get social benefits. Patients who are malnutritioned are proposed Graded Exercise Therapy to improve their fitness. If a doctor fails to alleviate suffering, or fails to use experience-based accepted procedures and medication then the doctor will be subject to regulatory actions. This is also applied by the Ethical Review Board (ERB). Evidence-based medicine has gone somehow too far. There is no evidence-based treatments when treatments are being used for the first time. So they are experimental treatments, and the possibility to carry out these treatments calls for innovations as they are advancing science very much. Nowadays we speak a lot about personal medicine versus quality medicine. In USA some doctors have been sued for their innovative and experimental treatments. This could happen in Europe. A physician and surgeon should not be subject to disciplinary action solely on the basis that the advice or the treatment he/she rendered to the patient is an alternative or complementary medicine, as long as that treatment or advice meets all the following requirements:  There is informed consent  The patient knows he/she is not getting evidence-based standard medical care  they have been fully informed of what the conventional treatments available are  they have been informed of any side effects that may still be allowed but not cause delay in traditional treatments or cause death or bodily injury Conclusion The medical community is getting more and more regulated which is understandable if the educational level of doctors is decreasing. However, at the same time, we should be careful not to throw out the baby with the bathwater for those who are innovative and practise medicine Page 54 of 82

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