Journal of IiMER important finding because when you hear about the symptoms of ME patients many will at a first glance think, oh maybe they are just depressed, they are a bit tired, a bit withdrawn from everything but these patients are NOT depressed! This is not depression, this is something completely different and the patients are not more depressed than the average population. We also found that ME patients are more disabled and socially marginalised than the average population, they have fewer relationships than the average population, the have a very high degree of unemployment (only 8% were employed), and more than half were disability pensioners, 12% reported being bedridden, more than half of them were unable to perform usual daily activities, in line with what Nancy told you about her own life, and 28% reported being in extreme pain or extreme discomfort. When you hear about the symptoms of ME, you may think these are common symptoms, trivial symptoms. It is a bit like a hangover. I also have these symptoms but this is not just being fatigued. This is not triviality, this is extremely ill, and seriously disabled people. Dr. Brinth told us how they transformed the completed questionnaire into one single score per patient and per subject. So they did that for the ME patients and they got this score of 0.47 and the same has been done for other patient groups in Denmark. From the results one can see that ME is the category of patients with the lowest score. They score lower and report a lower quality of life than any other condition. They have a lower quality of life than lung cancer patients, patients with stroke, diabetes, breast cancer, lung disease, …. What are the consequences?: Most patients never regain their pre-morbid level of health and functioning so often they learn to live with their symptoms but few of them regain premorbid level of functioning. ME is a massive burden, not only for the patients www.investinme.org And this problem is causing a serious controversy Page 60 of 82 but also for the caregivers, and also for all of us for society as such. And it is difficult to ascertain what the burden is for society because they are invisible, undiagnosed, late diagnosed, misdiagnosed. So we cannot count, do the maths or identify how much money this all costs and how much they are suffering. It is a massive problem. She said that patients often live outside society. In the beginning we may meet them, as medical professionals, as frustrated and angry patients because they are tossed around from specialty to specialty and seen by all sorts of different doctors without given any information or treatment. We find they live outside society because they give up on us, and they are even afraid of medical professionals because they are afraid of what will happen. Patients very often report that the feel they are met with scepticism and even hostility of care providers. Conclusion ME is a debilitating and often chronic disease and it is difficult to estimate – affecting maybe 1,000,000 EU citizens. The disease is very poorly understood and, unfortunately, we have several quite contradictory, explanatory models. Some doctors see an ME-like patient and think this is a functional disorder – that is a patient who converses psychological problems into physiological symptoms. Other doctors, other people see these people as patients with physiological severe immunological, mitochondrial, autonomic dysfunction. We do not have any convincing evidence-based treatments so what do we do with the treatment that makes sense in one of these explanatory models? It may seem very harmful for patients from another explanatory model. Graded Exercise Therapy (GET) makes perfectly good sense if you think these patients are young women converting psychological symptoms into physical symptoms, then it is a good thing to push them but if you think they are multi-system ill patients than you will harm them immensely. So it is a matter of should you challenge the patient or should you shield them?
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