Petitions, Neglect & State Sanctioned Deceit

By Lesley Scott

 

“We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO Classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome”.  Thus ran an e-petition on the No. 10 website that closed last month with eight thousand four hundred and eighty-one signatures.  The Government’s response has now been published but it will not bring any hope to those who suffer from ME/CFS of a change in the official position on this illness.  Their response declares there is no established cause for “chronic fatigue syndrome (CFS)/Myalgic Encephalopathy (ME)” but that “A number of different potential aetiologies including neurological, endocrine, immunological, genetic, psychiatric and infectious have been investigated….”  What is not clear from this statement is the fact that the Government have funded the psychosocial dimension of CFS to the tune of over £1.1 million but have yet to invest a single penny into biomedical research.  There already exists a vast deal of biomedical evidence of an underlying organic illness, but this has been gained from research funded entirely by charitable donations.   A Perth based charity called ME Research UK has made great advancements through a number of different research groups, which has resulted in evidence of a range of abnormalities in ME patients such as biomedical, vascular, brain and muscle.

 

The Government’s response to the e-petition goes on to state the World Health Organisation’s classification of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis as a neurological illness, but follows this with an implied concern that this classification is “ restricting research into the causes, mechanisms, and future treatments for CFS/ME.”  The lack of an even playing field as far as funding goes would seem to be more of a restriction to research than a classification that has existed since 1969 and was itself based on large amounts of clinical evidence stretching back to the 1930s.  The enormous body of clinical evidence in support of ME as a debilitating organic neurological illness has been published in prestigious peer-reviewed journals all over the world for the past 70 years.  Modern technology has now been used to confirm and to detail the meticulous clinical and scientific observations made about ME before 1988.

 

Despite the inference of the term Chronic Fatigue Syndrome, the fatigue involved in ME is not the defining feature of this illness:

“The term(s) “fatigue” and “chronic fatigue” never existed in this entity until it was put into [the name] in 1988.  The whole concept of fatigue has warped our understanding of this illness.”- Dr. Byron Hyde an expert in the field of ME and Chairman of the Nightingale Research Foundation, a charitable organisation set up to explore and understand ME, CFS and fibromyalgia-type illnesses .

 

 In fact the primary characteristic of ME is damage to the brain causing dysfunctions and damage to many of the body’s vital systems, including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musco-skeletal.  Dr. E.G. Dowsett, microbiologist, immunologist, virologist and ME expert with over thirty years experience states in her book “Differences Between ME and CFS” that: “ME is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction……It has a UNIQUE Neuro-hormonal profile.”

 

The very tragic case of Sophia Mirza who, in 2006, was the first person in the UK to have CFS/ME cited as the official cause of death showed the sceptics only too clearly that there IS evidence of inflammation of the spinal cord.  ME can and does kill.  “Nearly a thousand good articles now support the basic premise of M.E.  Autopsies have also confirmed such reports of bodily damage and infection” (Hooper & Williams 2005 [online] 

 

In 2000 Anthony Komaroff, then Assistant Professor of Medicine at Harvard and a world expert on ME wrote: “….there is now considerable evidence to an underlying biological process in most patients (which) is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress.  It is time to put that hypothesis to rest.”  There is no evidence whatsoever to show that Myalgic Encephalomyelitis can be caused or perpetuated by psychiatric or behavioural problems; nor that therapies such as cognitive behavioural therapy or graded exercise therapy (both of which are psychiatric based and both of which the Government condones in their e-petition response) are appropriate, safe or useful, indeed repeated or severe over exertion can cause permanent damage to the heart, the disease progression and/or death. Dr. Cheney in the Hummingbird’s Guide to ME explains: “…. The heart [of people with ME] doesn’t fill with enough blood before each beat of the heart so it is forced to beat faster to try to make up some of the shortfall, but people with ME are still left with reduced cardiac output which leaves them very ill and disabled.”

 

So why does the UK Government insist on financially supporting and encouraging a psychiatric led approach to the research and treatment of ME/CFS?  Why do they continue to ignore, discard and reject the vast amount of evidence dating back to the 1930s that proves an organic and severe illness?  Even two years after the recorded death from ME/CFS of one of its own citizens it is still blocking funding to vital biological research.  The Medical Research Council, the body that decides who gets this funding, classifies ME/CFS as a mental disorder, as does the Institute of Psychiatry.  What a peculiar situation indeed when the UK, as a signatory to the World Health Assembly, chooses to reclassify diseases in total disregard to specific instructions from the WHO.  A formal written acceptance in February 2004 by the then Health Minister (Lord Warner) that the UK accepts the WHO Classification of ME as a neurological disorder would seem to be totally contradictory to the UK Government’s consistent and shameful mistreatment of its citizens who are unfortunate enough to suffer from ME/CFS, mistreatment that has resulted in very physically sick people being forcibly removed from their homes and their families and put in locked psychiatric wards.

 

I am the mother of a teenager who has had ME for over four years. I am one of the eight thousand four hundred and eighty-one people who signed that e-petition to the Prime Minister and I am disgusted that a democratically elected Government is so blatant in its disregard for the needs and care of so many of its most vulnerable people.