Why care about M.E.? || M.E. Awareness Week 2011

“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, abusive 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to believe the best of people, so I put their behaviour down to their ignorance of M.E. They are simply following their out-of-date knowledge and training.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. These treatments, e.g. GET, are actually very harmful and dangerous for M.E. patients. 

As a consequence of the belief that M.E. is a psychosomatic disorder, 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.

I really cannot implore you enough to take the time to read these shocking and horrific accounts of M.E. patients who have been abused by doctors. These are just a few of the ones I have heard about:

Sophia: http://www.sophiaandme.org.uk/

Lynn: http://samedifference1.com/2011/04/18/a-review-of-one-last-goodbye/

Eilidh: http://www.meassociation.org.uk/?p=2748

Theda: http://www.watoday.com.au/wa-news/thedas-desperate-fight-against-a-chronic-killer-20100301-pcvv.html

To a lesser extent, me: https://www.jkrowbory.co.uk/2011/04/jennys-hospital-report/

Are you outraged? “Justice will not be served until those who are unaffected are as outraged as those who are.”


More info:

[For my story of severe M.E. and me, see: https://www.jkrowbory.co.uk/severe-me-and-me-my-story/ ]

[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 ]

M.E. Awareness Week = 8th-14th May 2011
International M.E. Awareness Day = 12th May 2011
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In order to be able to write this post, Jenny wrote it bit by bit on her iPod – a few sentences every day for several months. It took a lot out of her to do so.