Stroopwaffle · @Stroopwaffle
9th Feb 2011 from Twitlonger
“Justice will not be served until those who are unaffected are as outraged as those who are.” ~ Benjamin Franklin
I am bed-bound, unable to sit up and unable to talk. It is extremely difficult for me to eat, I have to have bedbaths and in order to go to toilet, I have to slide onto a commode beside my bed.
I'm sure that there are many, many people in the same situation throughout the world as a result of various diseases or tragic accidents. They are treated with respect and compassion by doctors. Unfortunately, the disease that has caused my predicament is Myalgic Encephalomyelitis (M.E.). Despite the severity of my symptoms and 24/7 intense suffering, I am treated like dirt by doctors. They have been dismissive, arrogant, rude, uncaring and neglectful. I like to believe the best of people, so I put their behaviour down to their ignorance of M.E. They are simply following their out-of-date knowledge and training.
As far as I understand, NICE (National Institute of Clinical Excellence) guidelines prevent doctors on the NHS from treating M.E. patients in a biomedical manner, despite evidence of abnormal test results. Professor Anthony Komaroff (of Harvard Medical School) confirms “There are over 4,000 papers on the biomedical nature of ME/CFS…spanning over 60 years.” So it beggars belief that most doctors still believe that this is a psychological disorder. But it is not surprising since the psychiatrists who have the government's ear have vested interests in the health insurance industry. The Countess of Mar has slated this corruption in The House of Lords: http://www.meassociation.org.uk/?p=582
The UK and NICE are on record as not acknowledging the World Health Organisation's classification of M.E. as a neurological disease (disease of the brain, spinal cord and nerves). Unfortunately this all means that the NHS's treatment approach is based on the should-be-void psychosomatic model of M.E./CFS.
As a consequence, next to no money has been spent on biomedical research into M.E. in the U.K. Even hayfever gets more research funding than M.E. So M.E. patients are left without a cure, waiting for privately funded research to bring us one. Some patients have been waiting for decades. Those severely affected are in a living death, invisible to the world, only slightly alive.
Are you outraged? “Justice will not be served until those who are unaffected are as outraged as those who are.” ~ Benjamin Franklin
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More info:
[For my story of severe M.E. and me, see: http://www.jkrowbory.co.uk/severe-me-and-me-–-my-story/ and a 1 year later update here: http://www.jkrowbory.co.uk/2010/10/message-from-jenny-update-19th-october/ ]
[About ME: It is an infectious neurological disease that occurs in both epidemic and sporadic forms.
Dr. Daniel Peterson, a leading M.E. clinician from Sierra Internal Medicine in Nevada, found that “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. The Head of the AIDS and M.E Clinic at Oregon Health Sciences University said that a severe M.E patient “feels effectively the same every day as an AIDS patient feels two weeks before death.” The severity of the illness varies greatly from person to person, with some having to be tube-fed and bed-bound, whereas others are just about able to manage a part-time job. In some cases it can be fatal.]
[A documentary about ME and the epidemics of ME that have occurred: http://mecfs-mystory.blogspot.com/2010/11/i-remember-me-documentary-about-mecfs.html ]
[The author Laura Hillenbrand, who has ME/CFS says in an interview:
"I didn’t want to talk about my illness very much because I had the experience of being dismissed and ridiculed. People don’t understand this illness."
"It’s exasperating because of the name [Chronic Fatigue Syndrome], which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb."
"This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke."]
Sent from my iPod. This post was compiled with help, using a lot of material from Jenny's website in order to raise awareness.