Journal of IiMER diagnosed at an early stage are increasing by the minute, but the research may bring about something in that field. We are not there yet, but we need to support the research that is going on. The Americans have calculated that across the world hundreds of billions of pounds/euro’s in benefits are not being given to people who are not being able to work. Dr Ian Gibson said there are two things for which the UN in developing countries could be supportive. Firstly, the WHO should be able to organise activities to support ME and its patients. Because there is money there and they have worked on diagnosis, treatment and care before e.g. in polio. Secondly, they have defined ME as a neurological problem but nothing is being done about it. So some of us are working very hard to change that. He also mentioned the WHO ICDclassification is still being looked at. The main issue for politicians to consider is the millions of people that have been classified with ME and remember that their lives are being ruined together with that of their families. However, to the question of how many people we are talking about, there is no answer because of lack of any registered data. So we do not really know how many patients have ME but the estimate is about 25 million patients around the world. ME is not recognised or being taken seriously. However, scientific research is finally going ahead and showing progress. It is mostly funded by private money, charities and other organisations and we have to find ways to increase this. The Americans are joining in, and are coming to the Invest in ME Research conference in London, which takes place for the 12th year now in June. At the conference patients and scientist are there together and it is amazing to see them talking to each other because doctors do not like talking to patients because of the difficult questions that are asked. It is also great to show people there is progress. The Norwegians are on the way to making a change for the patients. Conclusion www.investinme.org Many people out there need your support, and benefit from the exchange of different countries and that is something too to bear in mind when one thinks about ME. It is not just the illness itself but also the effect it has on millions of peoples’ lives and the realisation that nothing has changed over the last ten years. Nevertheless, it is starting to change now. Dr. Olli Polo – MD’s View of ME How patients with ME are seen by doctors without any particular knowledge of the disease? Myalgic Encephalomyelitis is a very particular condition and the normal concepts that one can apply to many other diseases cannot be applied here. This is clearly due to the misunderstanding about this disease. Last week one of his patients said: “Going to the doctor, is like going to the court. The doctor is the judge and the patient is guilty.” Dr. Olli Polo wondered if this was true, but there are stories that corroborate this based on the way doctors with a lack of knowledge of ME treat patients. The behaviour of doctors towards ME patients is characterised by loss of contact with reality, altered values and social interaction impairment. Doctors say that their patients are somaticizing their mental symptoms but now we actually know that the doctor is psychiatrizing the patient’s traumatic symptoms. Normally, doctors run the research but, in this case, the patients ask for research and recognition for ME as a real disease. Patients are Page 53 of 82
54 Publizr Home