I fear things are getting much worse for people with ME in the UK.. This article tries to show how.
This Desert : ME under New Labour and Unum. Greg Crowhurst Oct 10th 2007
"Two of the biggest problems currently besetting those with Myalgic Encephalomyelitis (ME) are (i) how to ensure that a physician accurately records the diverse and fluctuating symptomatology without dismissing such symptomatology as somatoform disorder and (ii) how to ensure that s/he understands that ME is not identical to "CFS/ME" as portrayed by psychiatrists of the "Wessely School", whose papers purporting to address ME (under the umbrella of "CFS") currently flood the literature but which bear little if any relationship to authentic ME. " Vade MEcum - Eileen Mashall and Margaret WIlliams - 28th June 2005
Given Labour's commitment to a narrow "work-based welfare strategy underpinned by coercion "(Morris (2007), Simon Wessely's 2007 "Chief Medical Officer's" speech to Unum, Why and When do Doctors Collude with Patients ? is all the more concerning; what chance do ME patients have, if they are portrayed as hysterics, bent on manipulating their gullible GP ?
The giant US firm Unum, arguably the world's largest disability insurance company, has been involved in advising the UK government since at least 1994 when the Conservative government hired its Vice President to advise on 'claims management'.
In 1993 the Conservative government published a White Paper on Science called Realizing Our Potential. The Research Councils, which distribute most of the money for science would be obliged to develop "more extensive and deeper links with industry". Thatcher's belief that science is the new industrial revolution, has been vastly extended by the Labour administration (Monbiot 2000)
This had contributed to the increasing involvement today of big business at virtually every level of UK policy making ; with a consequent displacement of civil democracy. Walker (2005). An "enormous amount of work" goes into citizen's " disenfranchisement", by vested corporate interests, those sectors of privilege and power "terrified by outbursts of popular participation in democracy", warns Noam Chomsky (2007) Pilger (2002) details how "disguised state power provides the conditions and privileges that protect western markets"; at the expense of the entire planet; the public is effectively excluded from the democratic process (Chomsky 2007)
"The art of government these days is to extend power without people noticing.We are moving with a sickening speed to a point where the reality of government intentions is the exact opposite of its presentational rhetoric", writes Henry Porter in the Observer (2007), noting new regulations which give 800 public bodies the right to access anyone's telephone records.
Margaret Thatcher's strategy of full commercialization of public services (private funding and private provision) is being pursued under New Labour as a strategy of private provision with public funding with the emphasis upon protecting the interests of big corporations, the higher echelons of society, the City and the right wing press, states letto-Gillies (2006).
In its ongoing relationship with the government, Unum has sponsored meetings at the 2003 and 2005 Labour Party conferences, titled 'The missing million: disability and pathways to work' and 'Welfare Reform: The way forward', respectively
Large companies are being invited to tender for the commissioning function of Primary Care Trusts (PCTs). Private companies will then have control over which treatments patients receive and who receives them. Clinical decision-making will increasingly come under the control of commercial managers and shareholders.
Since 2001, under a type of Private Finance Initiative, private firms are now involved in the funding, constructing, leasing and managing GPs premises.
Given that the GP's traditional contract with the NHS has been that of an independent contractor, it is "very easy for other providers to come in and contract out of the NHS the care of thousands of patients - so much per patient and so much per specific service to the patient - and then run the Primary care Unit as a profitable venture: doctors and other health workers will then be employed at a salary that will leave a good surplus for the company.
The entrance into the sector by private companies is proceeding at a fast pace, encouraged by the recent high settlements for payments to GPs. At the moment the Government through the PCTs is offering contracts to British and American companies; however, it is not difficult to see that in future some GPs may sell their practices to health care companies, particularly since they are now allowed to sell the practice 'goodwill' (ibid) "
Under New Labour the UK is witnessing a return to " pre-1940s thinking and the launch of US-style healthcare - deserts of poor quality or no healthcare for the many millions (primary care polyclinics) and a few little islands of excellence for the lucky few"; such is the inference of Lord Darzi's recent Interim Review, argues the Guardian (Oct 4 2007).
"Across the country PCTs are divesting themselves of services", writes Allyson Pollock (2007). "According to the Department of Health draft workforce plan there will be 32,000 staff redundancies. As one email correspondent wrote to me, big American companies are not slow in making their sales pitch for the NHS... Rumours abound that hospitals are going to be re-branded as "community enterprises" or not-for -profits, before all ties are cut by the government and they are run for profit, with about eight "community hospitals" (subsidised-non-profit NHS-style) left in the country. At the same time GP practices are being set up as commercial ventures. All this is clear in Lord Darzi's report."
A respondent (jchitty 2007) writes : "I have worked in a specialist community team within the NHS for over ten years. The increasing amount of cuts, sorry- reconfigerations,in the last few years have removed many excellent resources from our district. The spin put on these closures from management beggar belief. The NHS now is not interested in providing "care" it provides "treatment" Treatments can be measured, managed and costed and if they can be costed they can be sold."
Labour's Welfare Reform Bill received Royal Assent on May 3rd 2007; the ill are rightly worried that this is a drive to force them off benefits into jobs they are too ill to perform; as Corporate Watch (2007) point out : "There is a worrying possibility - that the cooperation between the UK government and Unum stems from a community of interest between them, with both the company and the government wishing to reduce the amount of people who are able to claim incapacity through sickness; the government so it can pay less in benefits and the insurance company so it can contest or refuse more insurance claims."
It was Wessely who stated in 1990 that ME exists "only because well-meaning doctors have not learnt to deal effectively with suggestible patients" (Psychological Medicine 1990:20:35-53).
Today, argues Wessely, the GP is likely to give the patient a list of options and ask them to decide on treatment, rather than "paternalistically " prescribe a particular course of action; this though can lead to "collusion", more often than not genuinely done in the interests of the patient.
The GP, he says, may think that the patient's interests are not best served by "sharing everything we know.sometimes we collude because we feel that any other course of action will lead to confrontation, and adversely affect not just our relationship with the patient, but the illness itself."
"So when the scans, EEGs and nerve conduction tests are back, and the diagnosis clear, what happens next?", asks Wessely.
"Does our ethically trained doctor, embracing autonomy and avoiding paternalism, share this information with the patient? "Sir/Madam " there is no neurological reason why you cannot walk. You have what psychiatrists call conversion disorder, but everyone else calls hysteria". You can bet your bottom dollar that they do not. In another study nearly every UK neurologist admitted seeing patients for whom the diagnosis of hysteria and/or conversion disorder was appropriate, but hardly any used that label in front of the patient. Instead most took refuge in a variety of euphemisms."
This is rich indeed.
The Wessely School campaigns tirelessly to have ME labelled as "CFS/ME", a psychiatric disorder. In October 2001 it was discovered that CFS/ME had been 'unofficially' reclassified as a mental disorder in a U.K adaptation of a WHO publication, the 'WHO Guide to Mental Health in Primary Care', developed by the Collaborating Centre of the Institute of Psychiatry, London. It was included under the classification F48.0 relating to mental, behavioural and neurotic disorders (neurasthenia).
The Wessely School has so influenced medical education (Williams 2007) that instead of being taught how to think about ME, clinicians are taught what to think about ME.
The Wessely School denies "known and available evidence " (Hooper, Marshall & Williams 2007)
The Wessely School training video for physicians, concerning itself with what to say and how to assess to a "tired patient" states that the "the important thing from the GP's perspective is looking for depression and anxiety, and we know that up to 75% of people with CFS also fulfil the criteria for depression and anxiety." and that patients "can be taught how to relearn or change their behaviour and their sort of physiological processes in a way that can actually control chronic fatigue syndrome."
Recognised as a specific disease entity by The Royal Society of Medicine in 1978.and by the World Health Organisation since 1969 as an organic neurological disease, ME is currently classified under ICD code G93.3. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination (Hooper 2007)
ME appeared in the standard textbook of Neurology as long ago as 1962 (yet under the influence of a powerful UK school of psychiatrists, "the (UK) medical establishment has chosen to largely ignore the wealth of international biomedical expertise and the need for proper physical patient investigation and has effectively recommended abuse and neglect of patients in place of genuine science-based medicine. " (Short 2007)
In what other neurological disease would psychiatric interventions, designed to convince the patient there is nothing wrong with them, be advocated as first-line / core treatments ?
Dr Betty Dowsett (2006) stresses how : "ME/CFS affects more Americans than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, and costs the U.S. more than $9.1 billion annually in lost productivity. More importantly, nearly 90% of patients have not been properly diagnosed. Recovery rate is poor, estimated between 5% and 10% of patients attaining total remission. Patients can be as functionally impaired as those suffering from diabetes, heart failure and kidney disease, and are often as severely disabled as those with heart failure, late-stage AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive pulmonary disease). "
There are over 4,000 papers documenting the evidence of biomedical aberrations found in ME/CFS ; simply ignored by the all-powerful psychiatric lobby.
Only a terminally ill cancer patient or an AIDS patient close to death, could possibly know what the degree of suffering is like in ME, there is no cure, no known treatment. And it can and does kill.
Medicine, states Professor Pall (2007) has a long history of giving a false psychogenic attribution to diseases, before their actual physical causes are known; this is currently the issue in ME, even though there is not a single shred of evidence that ME is a psychiatric, behavioural condition.
Multiple Sclerosis, a neurological disease now known to be caused by demyelination and subsequent neuronal dysfunction was widely attributed to an "hysterical personality structure". This led to the misguided conclusion in 1920 that men were more susceptible to MS, because women were mistakenly diagnosed as suffering with hysteria.
Parkinson's disease was once considered to develop as a result of an insecure childhood and poor adjustment to stress. Lupus too was considered an "hysterical" condition. Interstitial cystitis used to be described in a major medical textbook as being the discharge of unconscious hatred. Migraine, the result of a perfectionist personality. Psychogenic explanations have also been advanced for rheumatoid arthritis, asthma, peptic (gastric) ulcers and ulcerative colitis, all now known to have clearly identified physical etiologies.
According to Professor Pall (2007), echoing the ME Community's concerns over the recent NICE guideline on "CFS/ME", psychogenic advocates typically ignore " crucial genetic, physiological and biochemical evidence inconsistent with their views, they substitute emotional terminology for sound argument. They often use flawed logic. They rarely make any clear testable predictions that may be used to distinguish their views from those of physiological explanations, a cardinal sin in science."
As Simon Wessely so correctly points out in his Unum speech. there is no "moral paternalistic high ground", when "the doctor reaps a rich reward in fees." ; except that the issues for people with ME are much more serious than this.
What is so insidious and dangerous about the complex involvement of Unum in the lives of people with ME, through a minority group of UK mental health professionals, is how they perpetuate a bizarre world of their own making, where :
The "perverse" (Hooper 2006) use of the term Chronic Fatigue Syndrome has led to the Medical Research Council (MRC) turning down every application for biomedical research and funds only inappropriate, psychiatric, interventions.
The MRC has a secret file on Myalgic Encephalomyelitis (ME) that contains records and correspondence since at least 1988; the file is held in the UK Government Archive at Kew and cannot be opened until 2023. (Hooper, Marshall & Williams 2007)
There is never any mention, in professional guidelines on ME, of the need for "treatment", only "diagnosis and management". (Marshall and Williams 2006)
The 1991 Oxford criteria, which have never been adopted by anyone, except Wessely School adherents and which by definition should exclude those with ME, are so influential in policy making. (Jones 2006)
A widespread confusion in medicine generally, has been created, with many patients with fatigue as a major feature of their illness, for example, cancer, chronic obstructive disease, depression, and many others being diagnosed with CFS. This has left clinicians, patients, and carers without recourse to proper clinical and social support. In the case of children, vicious legal proceedings have involved some parents being accused of Munschausen Syndrome by Proxy (MSBP), with sick children taken into 'care' where they have suffered unbelievable cruelty. (Hooper 2006)
The vast majority of "CFS/ME" patients are seen by intentionally vague (but to the ignorant impressively sounding) "multidisciplinary teams" at "Fatigue" clinics set up using the Functional Psycho-Somatoform Disorder model and an ideology handed down to them by their puppet masters in the form of Wessely/Sharpe/White/Chalder et al. Ralph (2006)
Evidence of biomedical anomalies in ME/CFS is continually ignored. Marshall & Williams (2006)
Graded Exercise (GET) programs, probably the single most inappropriate treatment that a M.E. sufferer could be recommended to undertake, are recommended by NICE as the core treatment strategy for ME. "One of the unique features of authentic M.E. is exercise intolerance - that patients worsen with even trivial levels of activity or exercise. Exercise or exertion intolerance is one of the many things which separates Myalgic Encephalomyelitis so distinctly from various post-viral fatigue states or other illnesses involving 'chronic fatigue' as the defining or primary feature. People with M.E. do not improve with exercise. They cannot; exercise intolerance is a large and essential part of what M.E. is. (Bassett 2006)
The situation is awful.
The author, a full time carer for his wife with severe ME, stood on a cliff looking out to sea yesterday and wondered could things be any more terrible ? His wife in never ending, all over, constant throbbing pain, paralysis, numbness, hypersensitivity, every moment of every day and every night, since 1993 - and getting worse daily, while Unum and its coterie of mental health workers daily appear to strengthen their hold and extend their influence ; aided and abetted by government.
As Linda Crowhurst (2007) remarks : "Anyone with severe ME is subject to multiple levels of abuse.I have got to the point where I would rather go without than risk being exposed to the ignorance and misunderstanding and misinterpretation of people..ME is a political issue I believe and until it isn't I fear for people's lives and I fear a cure will never be found."
In 2001, Unum launched New Beginnings, a public-private partnership which has been hugely influential in shaping policy, especially in relation to the DWP's Pathways to Work programme. Illness, according to (Unum's) distorted logic, is a dysfunction of the person; the problem of illness is located in the individual's beliefs and behaviour.
New Labour's Welfare Reform Act was passed in May 2007. 'Pathways to Work', based on Unum's behaviourist logic, is to be rolled out across the country by 2008. GPs and Primary Care staff will be offered rewards for getting people back to work. (Crowhurst 2007)
Marshall and Williams (2007) ask: "at what point will the body of scientific knowledge about ME/CFS be so great that it will be considered serious professional misconduct for self-proclaimed "experts" to pretend that it does not exist?"
It is not likely to be anytime soon; so long as Unum and New Labour share the same bed