During the years whilst Sophia was ill and dying I had great difficulty in trying to understand why the guidelines of the World Health Organisation (WHO) were ignored by most doctors and social workers.

Having combed through the various discombobulated letters from those at the top of the medical profession as well as those in charge at Governmental level, it is clear to me now, that, although lip-service is given to the fact that the 'WHO's definition is relied on by The Department', neither they nor the doctors are obliged to follow the WHO’s guidelines. This contradicts what they have said. They allow Myalgic Encephalomylyetis (ME) to be treated as a mental illness.

For the past 42 years there has been no Government funded biomedical research into ME. As late as 2005 the Medical Research Council (MRC) stated that there was “no need to understand the causes of ME”. (p3)

The Chief Medical Officer (CMO) accepts the WHO’s classification of ME; she is cited as being the principal medical advisor,(13.7) yet, she can/will/is unable to do anything to implement it.

The General Medical Council (GMC) is responsible for regulating doctors and ensuring good medical practice,(12.4) yet they allow doctors to treat ME as they will. The GMC themselves used psychiatrists as their ‘un-named specialists’ to investigate my complaints regarding Sophia’s forced incarceration in a mental hospital and her ‘treatment’.

The National Institute for Health and Clinical Excellence (NICE) says that it “does not force patients into treatments they do not want”, yet Sophia was forcibly sectioned into a mental hospital 17+17aand18+18a.

Given that NICE itself ignores the WHO’s guidelines, and that for the past 42 years its ‘research’ has been done mainly by the psychiatric body, it still does not see the need for ‘updating’ their guidance;(3.9) this, despite there being little biomedical research to find the cause of ME. To say that Cognitive Behaviour Therapy (CBT) and Graded Exercise are the ‘clearest research evidence of benefit’ (3.7), since that was the only one allowed, is like saying that the world is flat, because that is how the horizon looks.

Evidence-based advice appears to be advice based on certain assumptions, not on facts.

The ‘leading experts’ are a group of psychiatrists and psychologists.'the leading experts'

Throughout all of the letters the term CFS has been used in conjunction with ME. By so doing, both the CMO as well as Mr Burstow and Earl Howe, are openly declaring that these are one and the same disease. This is incorrect. ME is a physical neurological disease International Classification of Diseases (ICD G93.3) of unknown origin, whilst Fatigue Syndrome (FS) is a mental illness (ICD F48). The waters are further muddied by incorporating the American version of ME, which they call Chronic Fatigue Syndrome (CFS), thus encouraging both the public and the medical professionals to consider them all to be one and the same disease. They are not. If they, in their privileged positions of power hold fast to such corruption of terms, why should we be surprised that those further down the chain of medicine, do likewise? ME history

After Sophia died, a post mortem was carried out on her. No cause of death was found. It was not until her spine was investigated elsewhere by Drs Chaudhuri and O’Donovan that the physical source of her death was uncovered (208). I now understand that it is not usual to examine the spinal cord at post mortems, which would account for the paucity of statistics available on ME. One wonders why the physical origins of ME have never been investigated and addressed. It would appear that the MRC awards research to bodies who are most influential, not to those who are most useful.

The Haldane principal mentioned by Earl Howe(18.9)recommends that general research should be under the control of autonomous independent Research Councils, which should be free from political and administrative pressures that might discourage research in certain areas. What it does not allow for however, is that within the medical world there is the psychiatric body, which is, in itself, acting as a political pressure group. This group has successfully excluded the very necessary basic physical research so badly needed. The reality is that the powerful cabal of psychiatrists, led by Professor Simon Wessley, backed by the huge pharmaceutical and insurance companies,(psychiatrists paid by outside interests) has, for the past twenty years, ensured that NO Government funded biomedical research was allowed; the only research that was highlighted was of psychiatric origin.(p1) (p2) Everyone, but everyone, had to agree with him i.e. that the king really was wearing new clothes.

For many years I could not really believe that the WHO was of absolutely no importance; that it was merely a well funded window dressing used as a sop by the 193 countries contributing untold millions to it. W.H.O. I was quite naive. Now, I know this to be true. It has taken me a long time to grasp this most basic fact. Although I realize that most people probably have understood this for some time, I thought that there might be a few people, like me, who did not understand the medical double -speak/spin doctors: hence this article. My thinking is this: that if I see builders erecting a house, I know that they must conform to numerous rules and regulations. These are in place so that the house will be safe and fit for purpose. If they fail to do so, then they are no longer allowed to practice their trade. It is ironic how bricks and mortar are far more important than the human beings who inhabit them.