Journal of IiME Volume 3 Issue 1 www.investinme.org Call to Action Why I Support Invest in ME Like a lot of people, I had no real knowledge about M.E (Myalgic Encephalomyelitis). I just assumed it was some luxury illness or 'yuppie flu', because that is the way the media, especially newspapers had portrayed this disease. Then my sister Sophia developed severe M.E. and two years into her suffering, it began to dawn on me that perhaps I had grossly underestimated M.E. I support Invest in M.E. because they understand the true nature of M.E and help many sufferers of this disease. It was partly ignorance that killed my sister. Yes you read that right, Sophia died from M.E. She was 32 and her suffering and death were largely preventable. Sophia‘s last wish was to help others not go through what she did. My sister was disbelieved by her doctors about the true physical nature of her illness. She was accused of attention seeking and having 'unresolved issues' and she was treated as if her illness had its roots in her mental health. My mum who was my sister’s main carer was accused of enabling Sophia’s illness for the simple crime of believing that her daughter was physically very ill. One of Sophia's doctors actually wanted to section my mum. I wish I were exaggerating but proof of all this is on SophiandMe.org.uk. Invest in ME is a charity that understands that M.E is a physical disease and that M.E has been categorised as a physical neurological disease by the World Health Organisation since 1969. The way M.E. is treated in this country is contrary to how a physical, neurological disease should be treated. In the UK, psychiatrists took charge of the care of people with M.E., but this disease is not a mental illness. It is like being treated by a dentist for a broken leg. The wrong people are in charge of a disease that they have no expertise in dealing with. Invest in ME (Charity Nr. 1114035) Roisin Mirza is the sister of Sophia Mirza and is a qualified nurse. Sophia died from ME. Disbelieved by those providing healthcare for her condition, she was sectioned by psychiatrists who neither understood her condition nor seemingly cared to analyse her symptoms in a medical way. Sophia was “sectioned as a result of exercising her right not to go into a particular ME Clinic. Despite the fact that she was bedbound, she reported that she did not receive even basic nursing care, where her temperature, pulse and blood pressure, were never taken. Sophia told me that her bed was never made, that she was never washed, her pressure areas were never attended to and her room and bathroom were not cleaned From Tuesday 22nd November, Sophia could not move an inch, neither could she sleep. On Friday 25th she died..” - taken from Sophia’s story on the IiME web site Page 35/76 Sophia Mirza
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