Our son got Myalgic Encephalomyelitis at the tail end of 2003 at the age of 11.  His symptoms began with him being very forgetful at school and a headache that would not go away or even be eased by painkillers.  The symptoms then increased: he lost his appetite and the thought of eating anything made him feel sick, he became painfully thin and survived on a liquid diet; his eyes were sore all the time and he blinked constantly; he started having problems with memory, language, thinking, reading, writing, problem solving; he could not concentrate for any length of time without being exhausted; he was cold when it was hot and hot when it was cold; his hands and feet were constantly freezing; he slept for vast amounts of time but woke feeling neither better, nor refreshed; his nights were turned into day and vice versa; his face had a terrible grey pallor when he was feeling particularly ill; he could not stand bright lights or noise; he had no energy to do anything except get up from bed and go to the sofa; he could not walk any distance and car travel exacerbated his pain.

 

We were referred to Ninewells Hospital, Dundee, where, after about three months of tests, the doctor said it was M.E. but that we would have to wait a further three months before it could officially be diagnosed as such; the “fatigue” element of the disease had to be seen for six months before such a diagnosis could be made.  This was a diagnosis made on eliminating everything else so that all that remained was M.E.  Our son was then referred to Murray Royal for an evaluation for depression - they said; he was assessed as non-depressive.  All that we then did was attend the out patient’s paediatric department of first Ninewells and then Perth Royal Infirmary for three monthly visits to check his height and his weight; visits that always involved lots of hanging around and always resulted in our son being exhausted with an increase in the pain levels of his headache and eyes and often ended in relapse.  The doctors at these appointments were always different but asked the same questions and told us the same thing:  we had to get him back to school and get him into a routine, waking him up with everyone else – following this advice resulted in him relapsing badly and we decided to stop the visits to the hospital and ask for his height and weight to be checked at our GP surgery.  On speaking to one of the local GP’s we were told that they would not make home visits to do this and we had to take our son to the surgery. Unwilling to continue with a harmful course of action, we declined to do this. Needless to say, our refusal has resulted in our son receiving no willing support from our local GP practice.  They have helped refer him to certain areas of the NHS but only on our request.  After about two years of trying the medical profession for help we had had enough.  Everything they did or told us to do made our son worse.

 

With the medical profession oscillating between being harmful and disinterested, we sought other solutions, reading as much as we could about M.E and discovering bit-by-bit its organic neurological basis.  Initially, this research helped us to understand the illness itself and what it was putting our son through.  Subsequently, a more complete, but disturbing, picture has become clear.

 

The historical evidence of M.E. is well documented.

•       M.E. has been recorded in both epidemic and sporadic form worldwide since 1934, the first epidemic occurring simultaneously or following a Poliomyelitis outbreak.

•       During the summer of 1955, the Royal Free Hospital London, a Polio hospital, experienced an epidemic of Encephalomyelitis simulating Poliomyelitis which affected more than 300 staff.

•       From 1934-90 there were at least 63 outbreaks of epidemic proportions in North America, the UK, the rest of Europe, Australasia, Africa and Asia.

•       Up until 1956 M.E. was called “atypical poliomyelitis”.  Then due to findings of signs of dysfunction in the central nervous system and evidence of diffuse brain injury in autopsies in both epidemic and endemic situations, it was renamed M.E.

•       Since 1969 the World Health Organisation has listed M.E. under the category “other diseases in the brain” under code G93.3 in recognition of the large body of compelling research that was available.

 

The neurological nature of this disease was never in question.  It took us four years of self study to discover that M.E. is a distinct organic neurological disorder caused by an enterovirus (a virus that enters the body through the gastrointestinal tract and thrives  there often moving on to attack the nervous system). It has also been demonstrated recently by American researchers that in ME/ICD-CFS, the same pathway in the body can be affected by chemicals.

 

The confusion surrounding the terminology M.E. and CFS (Chronic Fatigue Syndrome) make it very difficult for lay people like ourselves to make headway in discovering the truth about this debilitating illness.  The term CFS originates in America where it was used to describe an outbreak of a totally different virus, the Epstein Barr Virus (which belongs to the herpes family) and was never intended to include M.E.  From 1988 onwards there has been a campaign by the psychiatric lobby to eradicate the term Myalgic Encephalomyelitis and bring it instead under the umbrella of CFS, i.e. redefine it as a mental illness.  Professor Simon Wessely, a UK psychiatrist, has been at the forefront of this onslaught together with the so called “Wessely School”.  As the influence of the psychiatric lobby on the treatment and diagnosis of CFS grew so did their attempts to have M.E seen as synonymous with CFS.

 

Simon Wessley’s list of titles is impressive no doubt, but his views on M.E./ICD-CFS make some of his credentials perplexing.  He is Director of both the CFS Research Unit and the Gulf War Illness Research Unit at the Institute of Psychiatry, even though he is well known for his belief that neither M.E nor Gulf War Syndrome exist.  His views on M.E./ICD-CFS are well documented:

“The description given by a leading (doctor) at the Mayo clinic remains accurate: ‘the doctor will see that they are neurotic and he will be disgusted with them’” (chronic fatigue and myalgic syndromes. Wessely S. in: Psychological Disorders in General Medical Settings)

 

“There lies at the heart of CFS not a virus (or) immune disorder, but a distortion of the doctor-patient relationship” (chronic fatigue syndrome: an update.  Anthony J Cleare, Simon C Wessely)

 

In 2001 the psychiatric lobby tried to single-handedly reclassify M.E. and CFS under the WHO category of Mental Health (F48.0) without the WHO’s knowledge.  They were eventually stopped but not before 30000 copies of “Guide to Mental and Neurological Health in Primary Care” had been distributed with the mis-classifcation intact.  Wessely’s and the “Wessely School’s” influence extends far and wide.  Wessely himself is an advisor to the UK government and to the Ministry of Defence.  Their misinformation campaign is contaminating such government bodies as: the Centre for Review and Dissemination at York; the NHS Information Centre (formerly the Information Authority); the National Institute for Health and Clinical Excellence (NICE); THE Department of Health; the Department for Work and Pensions (DWP); certain Royal Colleges; the Science Media Centre; NHS Direct; the Medical Research Council (MRC) as well as with the medical insurance industry and the UK medical journals.  All these bodies have embraced the ideology that ME/CFS is a “manifestation of aberrant illness behaviour that can be modified by a regime of psychotherapy”.  Funding for the “Wessely School’s” research into CFS has come not only from the Medical Research Council but also Wellcome Training Fellowships in Clinical Epidemiology; a Wellcome Research Fellowship in Epidemiology; a Wellcome Trust; ICI Pharmaceuticals; Pfizer UK; Duphar Pharmaceuticals; The Linbury Trust; the Medical Policy Group of the Department of Social Security; the Department of Health; Private Patients Plan by BUPA and the US Department of Defence all of which have a vested interest in having M.E./ICD-CFS reclassified as psychiatric in origin and blocking, ignoring and discrediting any research that shows M.E/ICD-CFS to be an organic neurological disorder that can  be exacerbated by chemicals. 

 

 

We need to ask the questions:

1.        Why a small group of  UK doctors, in the face of extensive worldwide literature on the organic nature of M.E/ICD-CFS have been allowed to exert such an influence over the rest of the UK medical community?

2.        Why this group are allowed to ignore the large body of compelling research that led the WHO in 1969 to classify M.E. as a distinct neurological disorder, a classification that remains intact today.

3.        Why the worldwide research, proving the vast range of physical symptoms of M.E. and the evidence of an enterovirus and chemical effects are being ignored?

4.        Why the UK Government takes the advice of Simon Wessely and the "Wessely School" as their official “experts” on M.E./CFS when their views are well documented as not believing M.E./ICD-CFS even exists?

5.        Why, considering the WHO classification of M.E./ICD-CFS, patients in the UK are still being treated for psychiatric disorders, some being forcibly removed by police and social workers– even children, against their parents’ wishes, when those parents have refused psychiatric treatment for their child?

6.        Why the UK Government is happy for the NHS to enforce treatments (i.e. CBT, GET) based on misinformation that often results in severe relapses that can last years and cause immense pain and suffering?

7.        Why the UK Government allows this misinformation to dictate policy on the benefits it pays to its sick and incapacitated citizens?

8.        Why the UK Government allows people severely tainted by their relationships with both the medical insurance and pharmaceutical industries to advise and decide on research funding into M.E./ICD-CFS?

9.        Why, after nearly 70 years of worldwide evidence from eminent immunologists, neurologists, epidemiologists, doctors, scientists, are adults and children still disbelieved and dismissed by the medical profession?

10.     When will these patients be given the same respect, the same dignity and the same medical professionalism and state support as anyone else who suffers from a life threatening disease.