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In March of this year 2011 a new Chief Medical Officer (CMO) Dame Sally Davies was appointed. During the previous ten years, the CMO Sir Liam Donaldson, gave his tacit approval to the treatment of patients suffering from Myalgic Encephalomylyetis (ME) as having a mental illness rather than the physical disease that it is. It was classified as a physical disease in 1969 by The World World Health Organisation (WHO ICD G93.3).
I thought that this would be an ideal time for the new CMO to right the wrongs of decades. I needed to break through the miasma of ‘medical double speak’. I wrote her a letter(1), sending copies to various MPs. As a result, the Department of Health from Leeds answered me on her behalf as well as Paul Burstow, the Minister of State for Care Services from Westminster to whom the MPs had passed on my letters. Earl Howe also answered an MP who queried certain facts. I also needed to find out how the WHO guidelines regarding ME were implemented, i.e. who was responsible for overseeing these guidelines and who was accountable, should they not be implemented.
In his letter dated 7th April (2.3) Mr Burstow stated that “The Department has always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD) under ICD Code G93.3.”
That “it does not force patients into treatments they do not want” (2.6).
He confirmed that the NICE guidelines regarding Cognitive Behaviour Therapy (CBT) and Graded Exercises were appropriate, as they had the “clearest research evidence of benefit” (3.7) and that NICE saw no need to change their opinion or guidance (3.9).
In his letter dated 26th May it was reiterated that it is up to the individual doctor as to whether they treat a patient suffering from Myalgic Encephalomylyetis (ME) as having a physical disease or a mental illness. “The Department does not intervene" (6.2).
It said that the Government funds research by the Medical Research Council (MRC) (6.4). As late as 2005 the MRC wrote to my then MP stating that there was “no need to fully understand underlying causes or triggers for those with ME” p3
The Chief Medical Officer's (CMO) letter was answered on 26th April by one who had an indecipherable signature, minus a printed name (9.6) On phoning I was told that the said owner was a Mr Colin Walker, who was ‘on holiday’.
Mr Walker states that the National Institute for Health and Clinical Excellence (NICE) guidelines were published in 2008 (8.4), as opposed to Mr Burstow’s claim of 2007 (2.4). These guidelines were formulated, despite not knowing the cause of Myalgic Encephalomylyetis (ME)(6.3).
These guidelines too, are not mandatory (9.5).
In the letter dated 7th June (author un-named, unsigned and unreferenced), it states that past and present CMOs accept the World Health Organisation (WHO) classification of ME (12.2), and that the “CMO is the Government’s principal medical advisor and the professional head of all medical staff” (13.7), BUT that the General Medical Council (GMC) is responsible for regulating doctors (12.4) And, once again, states that the “NICE clinical guidelines are not mandatory” (12.2).
On 4th July a Mrs Pemberton wrote, saying that Mr Walker was, once again, ‘on holiday’. She said that the International Classification of Diseases (ICD) are mandatory in England, but only for that purpose ‘classification’ (15.1). The inference is that such classification does not have to be followed in practice; it appears to be just a paper formula.
She ‘justified’ the reasons why ME is dealt within the "Older People and Dementia Branch" (15.3).
Earl Howe replied that he was responsible for research (17.1). He said that the Medical Research Council (MRC) is committed to supporting scientific research (18.11), adding that it was in keeping with the Haldane principle (18.9). This was also confirmed by his answer to Lady Marr in the House of Lords.
In Paul Burstow’s answer to her he confirmed that the Department does not monitor the level of provision for those suffering from ME (21.4)
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.
In recent times there has been a meltdown within the free market banking system in England, resulting in massive losses, financial ruin and destroyed lives. Those who were accountable and highly paid did not suffer and subsequently were rewarded with generous bonuses. It appears to me that the mandarins within the medical profession have a similar free market as regards ME. They appear indifferent to the unbearable suffering of those with ME. They are accountable to no one. They have forgotten their oath...”if you can do no good, do no harm”.
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.
So, did I find an answer? Yes, I did.
The World Health Organisation (WHO) guidelines for Myalgic Encephalomylyetis (ME) are held as the gold standard of what is absolutely correct by all countries who contribute to it. However they are NOT followed by any organised medical body in England.
The Chief Medical Officer (CMO) does not have to ensure that the WHO’s guidelines are followed.
National Institute for Health and Clinical Excellence (NICE) ignores these guidelines; but gives guidelines of their own; these too do not have to be followed.
The General Medical Council (GMC) does not follow the guidelines either, nor do they ensure that doctors do so.
Doctors and psychiatrists are allowed to diagnose ME as a physical disease or a mental illness.
There is no responsibility for anyone to oversee the implementation of the WHO’s guidelines. There is no accountability by anyone to anyone.
The grim reality is that patients suffering from ME (240,000) in England have to live in the knowledge that they are hostages to the majority of the medical professionals. It seems that their lives and daily suffering are of little importance to them. They can be maltreated and/or sectioned in a mental hospital if their doctor together with a second doctor and social worker agree to it. It is an absolute cruel and inhumane daily hell of suffering for all these men, women and children and their families. This is continually reinforced by the powerful psychiatric bodies, which ignore the absolute necessity for extensive biomedical research for this truly terrible debilitating physical disease.
The disease ME is a cruel one, manifesting in multiple physical forms. This in itself is a daily and hourly agony which must be endured for years on end. Far,far greater is the suffering caused to the thousands of patients by the many, but not all, of the medical profession, who believe in their own omnipotence; who may or may not decide to treat the disease ME as a physical disease or a mental illness. There is no one to correct their decisions. There is no accountability. Patients suffering from ME are living in fear of the very people who are pledged to care for them.
The answer I found is transparently clear: nobody, but nobody, cares.... enough.
In October 2011, The Norweigan Government apologised for their previous treatment of all those suffering from ME.www.euro-me.org/news