Journal of IiME Volume 3 Issue 1 SEVERE ME – A PATIENT’S VIEW Severe ME requires investigation and treatment by biomedical researchers and clinicians understanding the biomedical basis for the illness. Against a background of severely affected people with ME facing reluctance from healthcare authorities to consider their future, then when a health authority has an opportunity to employ world-renowned researchers and physicians who understand the illness, when a patient community is pleading with the same health authority to employ these same physicians, then any logical person must ask why isn’t this happening? Here a long time sufferer of ME has dictated the following article. I want you to imagine what it is like to have severe, neurological ME. I want you to try and think what it must be like to experience constant ongoing physical pain, all over your whole body. Pain that throbs, pain that stings, pain that itches and irritates, burns and moves, pain that invades your muscles, your skin, your scalp, your feet, your eyeballs, your tongue, your intestines, so that there is no part of you experiencing any respite from pain, any second of the day or night, in fact the pain increases in intensity and agony every time you try to rest or sleep. I want you to try and imagine muscle paralysis that invades you, so that when you awake you can no longer speak, move your lips open your mouth, open your eyes, move your fingers, feel your hands or your arms, your feet, your toes, your legs. I want you to imagine what its like to desperately need to go to the toilet but to be unable to move, to be unable to sit or stand, to be unable to walk but worse than this to be unable to bear to be touched. So that even if there is someone to move you, to lift you, to stand you up, to sit you in a wheelchair, to push you to the bathroom, you cannot access this help. Invest in ME (Charity Nr. 1114035) Day upon day, year upon , year for hours on end. I want you to imagine the physical torment of hyperacusis, of being so hypersensitive to noise that a whisper sounds like a shout and that any loud noise feels like a physical assault not just on your ears and your head but on your whole body. I want you to imagine the ordinary things of life becoming completely inaccessible because you have no energy, you cannot breathe easily or fully, you cannot eat so many different foods because of allergy and sensitivity, you cannot be in the same room as people because they drain you of any energy you might have had and their voices hurt you and you become more ill if you try to engage with them. I want you to imagine a life where the TV hurts your eyes, where the computer screen hurts your eyes, the sunlight, even the normal daylight, without bright sun, hurts your eyes and gives you severe eye pain. A head pain that goes on and on for days on end. A life where the telephone hurts you to hold it, to hear it and where your brain is unable to process any incoming information rendering Page 9/76 www.investinme.org
10 Publizr Home