Posted by Heidi/Mermie Pretty much everything. I am never free of many of the symptoms mentioned previously. Sometimes I am also paralysed, unable to speak, have small seizures or I have fevers that can last for weeks. I am always in pain. At the moment I'm well enough to also be able to have a friend visit once every week or two for a few hours and/or to write or paint occasionally for short periods. But there are also people who have even more severe ME/ICD-CFS than I do. One woman I know with ME/ICD-CFS has almost died twice from this illness. On the second occasion she stopped being able to breathe by herself, to swallow even her own saliva or to talk at all. She was having grand mal seizures daily despite medication. She had severe muscle twitches and hallucinated due to extreme pain. She was completely paralysed for months and had to be turned, fed, and bathed by others. Doctors gave up on her and she was sent home to die. Thankfully she was then visited by a specialist who she credits with saving her life. She says, "It took months before I became a bit better again and could move/whisper and swallow a bit." But she is still almost entirely bedbound and needs daily help with all her personal care. ME/ICD-CFS can also kill. Ricky Buchanan, who runs a ME/ICD-CFS website explains: "It can overwhelm the immune system so much that opportunistic infections come in and kill the patient, much like in AIDS" . Death can also result from other things such as organ failure, stopping breathing or severe cardiac irregularities . When she was just 19, Alison Hunter died from a long battle with ME/ICD-CFS. In a quote taken from her memorial foundation web site: "In the end, heart damage, massive ulceration to her throat, failure of her gut and bowel and horrendous neurological symptoms, conspired to defeat her." There are also people who have only moderate symptoms. But people with moderate illness are still dong it really tough. Passing for 'almost normal' is hard in different ways. Dealing with the varied symptoms of ME/ICD-CFS while trying to also study or work part time (with little or no support or understanding) leaves people struggling just to get by, leaving nothing much left over for anything else in life. Even in moderate cases, ME/ICD-CFS is one of the most frightening, tragic and debilitating illnesses there is. *recovery "When asked on CNN how many of his [ME/ICD-CFS] patients had fully recovered in fifteen years, Dr Peterson equivocally and chillingly stated, "None."" ( ME/ICD-CFS can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. Some patients experience spontaneous remissions albeit most often at a greatly reduced level of functioning compared to pre-illness and such patients remain susceptible to relapses for the remainder of their lives - ME/ICD-CFS is a life-long disability where relapse is always possible. Studies published in international medical journals have also included people who have had ME/ICD-CFS for 20 or 30 years. Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME/ICD-CFS is fatal. (M.E. Society of America [Online]). As M.E. expert Dr Elizabeth Dowsett explains: After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilisation, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure). It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief and rejection of welfare support. It is an additional and potentially avoidable factor . So why is ME/ICD-CFS not regarded as a serious illness by some people? Why is so little money going into ME/ICD-CFS research? Why is it so difficult to get social security payments when you are so severely ill?
on 8/27/2007, 4:19 am
But that's about it and these basic tasks are usually all I can do in a day. I have to rely on other people to do all the housework, cook and cut up my food for me, wash my clothes, buy things for me and make phone calls on my behalf.
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