M.E stands for Myalgic Encephalomyelitis. Sufferers vary from mild to very severe. Symptoms can vary from person to person. However all individual's daily lives are hugely affected and last a life time. It affects adults and children of all ages regardless of gender or ethnicity. It is a widely overlooked illness which causes inflammation of the brain and spinal cord. A part of the brain called the hypothalamus is affected which then affects all sympathetic processes in the body, breathing being only one of those processes. This illness affects the entire body causing a wide range of complex symptoms such as exhaustion to the degree of paralysis and being unable to use facial expressions, speak or open eyes. It can also cause exhaustion in heart muscles to breath properly.
Sensitivites to all the senses which cause other symptoms, hormonal imbalance and mood swings, pain to the degree of using morphine and other medication, mirgraines, IBS and digestion problems, cognitive difficulties affected memory and sometimes facial recognition, word recall, difficulties communicating and more.
The most severely affected live in darkened rooms, pained by any form of light and use eye masks. They also use ear plugs and noise defenders as all forms of noise hurt including sounds as quiet as ones own breathing. Many are tube feed as they are now unable to use their muscles to swallow due to exhaustion. Some use oxygen as the heart struggles to pump sufficient blood volume around the body. There is an even larger struggle when someone is in the upright position, when M.E causes POTS (Postural Othostatic Intolerance) this creates an even large difficulty to pump blood sufficiently. Some die from organ failure relating to M.E. Many take their own lives as there is no medication or cure. Some end up in care homes. There are people who live decades this way.
The WHO (World Health Organisation) classify M.E as a neurological biological illness however much psychosocial research is being done and promoted which is harmful to M.E patients as it ignores the WHO definitions.
Many are disbelieved, by family, friends, the medical profession and DWP. It is then difficult to gain much needed support to survive, benefits and unbareable isolation which leads sufferers into suicide. Abuse from lack of understanding which has lead to death in some cases (Sophia Mirza).
IiME (Invest in M.E) is made up of unpaid volunteers with no paid employees. All work done is without payment. Researchers from around the world are involved. All money goes straight to biomedical research and on improving and promoting education about M.E amongst health staff and raising awareness of the disease . There are two main topics of current research. One is for Rituximab, which is a treatment used for those with cancer patients and is currently having some promising affects for M.E patients. Also the research being done on the Gut flora to find out if the lack of gut absorption is a large cause.
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