Journal of IiMER Volume 13 Issue 1 Invest in ME Research Excellence for ME that can perform translational biomedical research in a European hub, able to develop treatments for ME. Apart from raising funds and enormous awareness of ME Mike has also been able to look at issues in each European country. His blog not only details his marathon events. He has also made an effort to report on the situation with ME around Europe by discussing with ME patients in the country in which he is running. And it is very illuminating. Different countries, but all sharing the same problems. Politics, the influence of Biopsychosocial (BPS) doctrine, the lack of funding for proper research, recommendations from official bodies for deleterious Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), the lack of belief of doctors in the disease, the stigma and mistreatment around ME, patients having to research themselves, the problem not being dealt with and not going away.......... Let us look at some of the comments that Mike brought back from patients in the countries in which he ran. DENMARK “Very few doctors in Denmark know that ME is a biological illness, so most patients do not get an ME diagnosis.” "Instead, when a patient presents with ME symptoms, they are told that they are stressed, just need to pull themselves together and get some exercise. “ “The main reason for this overwhelmingly negative attitude about ME, is a long campaign by a group of psychiatrists who are working to have ME seen as a form of somatoform disorder" AUSTRIA "A doctor in Vienna, recommended to me by a ME / CFS group, made a diagnosis of CFS, amongst other things. I cannot obtain a second opinion, because according to ME / CFS Help Austria, this doctor is the only one in Vienna!" Invest in ME Research (Charity Nr. 1153730) investinme.org “…hardly anyone takes you seriously, you are usually left totally alone, especially by doctors, you are ridiculed, accused of just being lazy, not wanting to get better, and told that you should just make more of an effort. !” MALTA "There is no study or any estimates to show or at least a demarcation if there ever was any study to establish a percentage of how many ME sufferers there are there. Some doctors say it is approx. 0.02 % same as in Europe. Due to unwillingness to diagnose and lack of knowledge on ME, it's difficult for doctors to give an accurate figure." SLOVENIA "They don't support us too much around this disease, like we're nothing. We are not noticed even though we are very tired and we are hurting. We are invisibly ill, like a house that has a nice facade, but you can’t see that inside it has a fallen staircase and a broken sink." NETHERLANDS “I was denied help for cleaning as it was considered anti rehabilitive and a house because a psychologist told me that he didn't see anything wrong with me or my situation. Financial support went well but for many it's very difficult, more often than not people even need to fight it out in court. Very sad”. FINLAND "CFS/ME is classified as a psychiatric disorder by most of the doctors and they tend to treat it with antidepressants and graded exercise therapy (GET) which are potentially very harmful to patients and may permanently worsen their condition. Fortunately for the patients even these harmful therapies seem unavailable as there are no experts even to carry out GET-therapy. Patients are totally left without any care." IRELAND "Our own Department of Health tends to follow the advice given by the UK Department of Health. Page 36 of 52

37 Publizr Home

You need flash player to view this online publication