"I see no ships"

I SEE NO SHIPS: New Labour Health Policy and Myalgic Encephalomyelitis (ME).*

In November 2006, Professor Anthony Komaroff of the Harvard Medical School publicly stated at the USA Government Centers for Disease Control and Prevention (CDC) press conference that: "…there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness [ME/CFS]. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over"[1].

Indeed, and the growing inexorable truth that bona-fide, neurological ME, long recognised by the World Health Organisation (WHO) at ICD-10-G93.3 [2], is a serious physical illness has yet again been augmented by peer-reviewed science (see: www.meresearch.org.uk ). This time through the work of Drs John and Andrew Chia in California: whose findings hit the news headlines on 13 September 2007 [3]. They have clearly demonstrated that specialised, non-standard, patient investigation reveals serious physical pathology: correlating to sufferers’ experience and symptoms. In this case, stomach biopsies uncovered clear localised enteroviral infection that was undetected by standard tests: with the stated implication that such stealthy infection is likely to be present in the brain/CNS, heart and other key organs. Other ‘novel’ yet scientifically rigorous tests have unequivocally demonstrated, for example, that ME patients’ hearts are in varying degrees of failure [4], their brains are starved of blood and oxygen [5], their muscles have biochemical and cellular damage [6] and that, crucially, matters are made worse with increased physical exertion. In short, ME is not just ‘‘fatigue’, it is a multi-system physical disease where increasing bodily activity can cause long-term serious damage or even death [7]. The marriage of ‘‘Chronic Fatigue’ patients to true ICD Myalgic Encephalomyelitis (ME) patients is an unholy one and good science demands a divorce [8].

In spite of all of this, and in the face of widespread protestations, the UK National Institute for Health and Clinical Excellence (NICE) has just recommended psychotherapy (CBT) and graded exercise therapy (GET) as the ‘‘clinically excellent’ treatment of first choice. It has done so on the basis of only seven highly questionable psychiatric RCT papers that are pregnant with scientific flaws and vested interest: supplied in a completely fraudulent ‘review of the scientific evidence’ by the York based Centre for Reviews and Dissemination (CRD). Not only did the ‘York Review’ team fail to even look at most of the international biomedical evidence mentioned by Professor Komaroff; the lead author of the CRD paper has been (rightly) accused of professional misconduct [9]. The findings and recommendations of the NICE, the NHS-Plus and other instruments of state ‘CFS/ME’ policy are neither ‘evidence based’ or ‘clinically excellent’; they are based upon deception and amount to ‘policy based evidence’ masquerading as ‘evidence based policy’. To add insult to injury, the NICE has ruled out specialist investigative tests (such as those mentioned above) that really do reveal what is going on in patients, and NICE have effectively advised doctors to merely assume that CBT/GET is appropriate: in spite of contraindicating scientific evidence and expert opinion. This is the intellectual equivalent of resolutely standing on a beach with one’s back to the sea and boldly exclaiming: I see no ships! Imagine the outcry if Multiple Sclerosis patients were not allowed a diagnostic lumbar puncture and Cancer patients were refused biopsies and simply told to incrementally increase their activity and ignore clinical signs and symptoms? I repeat; this is notscience, it is not ‘evidence-based’ and it is not ‘clinical excellence’. It is political spin and medical malpractice.

AN INCONVENIENT TRUTH:

Such a travesty against both patients and good science has occurred because a powerful lobby group of insurance-industry-linked psychiatrists, their aides and dupes, have managed to capture the minds of ministers, officials, journalists and some clinicians and journal editors. The insurance industry, and indeed the Department of Work & Pensions, stand to lose considerable sums of money if ME patients are categorised as physically ill - as opposed to psychologically so. The psychiatric lobby has employed four main tactics in their campaign: Firstly, they include vague categories of relatively mildly ‘fatigued’ patients in their ‘CFS/ME studies’ whilst excluding patients with the full neurological and multi-system signs and symptoms recognised by international expertise [10]. Secondly, they have laboured to fudge and confuse disease labels and obscure the way MEis singularly categorised as a physical neurological disorder by the WHO [11]. Thirdly, they largely ignore and misrepresent the body of international biomedical evidence. The situation is summed up succinctly by Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected ME/CFS Clinical Case Definition:

"Supporters suggest that ‘ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes’. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of patient’s symptoms, blame them for their illness and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS" [12]. Fourthly, the psychiatric lobby has been able to capture the minds of busy professionals and policy-makers via a prolonged and well-funded PR campaign that floods the medical literature and press with what is essentially polysyllabic spin in place of genuine science: taking advantage of the fact that even most doctors simply do not have the time or inclination to engage with the complexities involved. It is effectively assisted in this by the ‘charity’ ‘Action for ME’ (AfME), an organisation that portrays itself as independent and representing ME patients when it is neither: AfME receives government funding, promotes ‘CFS/ME’ psychiatrists and their supporters, obscures biomedical expertise and has not held a properly accountable AGM for over ten years. Frankly, AfME is widely viewed by biomedical activists as a ‘Judas charity’ that obtains money from patients by misrepresentation. The proverbial devil is very much in the detail with all this but, thankfully, an erudite overview with resources for further investigation is now available in the document entitled ‘Corporate Collusion’, by Professor Malcolm Hooper, Eileen Marshall and Margaret Williams. It is available at the ME Action UK website: www.meactionuk.org.uk [13]. This must read paper is accessible to both patients and professionals alike and is a serious tool for investigative journalists, doctors and lawyers. An additional, and excellent, commentary on the NICE Guideline by Richard Simpson of the charity Invest in ME is also essential reading [14].

Corporate skewing of public policy to the detriment of society is of course nothing new and Al Gore so eloquently highlights the problem in his seminal 2006 climate-change film. Mr Gore draws parallels with medical prostitutes working for British American Tobacco in the 1970s: whose claims that smoking was harmless contributed to the death of Mr Gore’s own beloved sister. Prior to the 1980s, ME largely escaped such skulduggery and was a widely accepted physical disease in the mould of post-polio syndrome: residing mainly in honest biomedical research backwaters under the scrutiny of Drs Ramsey, Dowsett and Richardson et al [15]. From the 1980s however, ME became a very costly ‘inconvenient truth’ to insurers and governments alike as it began to reach epidemic proportions with millions affected around the world. Sadly, psychiatric fabrication became the unscrupulous escape route for managers of insurers’ profits and fiscal budgets [16].

Unnecessary death, tainted with the hand of scientific and medical malfeasance, is particularly sad and I strongly urge you to visit the Invest in ME website: www.investinme.org . Do take a look at the death certificate comments and photographs of Sophia Mirza. Sophia died of ME-induced kidney failure after being forcibly removed to a mental hospital by psychiatrists who refused to believe her or conduct an adequate medical examination. As the UK Coroner states: "she died as a result of acute renal failure arising from the effects of Chronic Fatigue Syndrome (M.E)" [17]. Sophia was a beautiful young woman who should have had her whole life ahead of her. Her untimely death is an under-reported national scandal and is far from unique [18]. Journalists and professionals in particular should examine and highlight such matters; but any able person who has been told of the abuse that both science and ME patients are being subjected to in the UK surely has a moral duty to investigate and act – particularly those charged with a social or religious duty of care.

FAIT ACCOMPLI, FAVOURITISM & FIG LEAFS:

Whilst the NICE ‘CFS/ME’ Guideline and other anti-science/anti-patient establishment measures are a massive blow, they are in fact a veritable house of cards and a vulnerable target for committed lawyers and journalists with an eye for detail and justice. Professor Richard Baker, Chair of the NICE Guideline Development Group (GDG), claims in the Preface tohis Guideline:

"In developing the Guideline, we kept in mind the overall goal of improving care for people with CFS/ME, with the patient’s preference and views firmly in the driving seat. Rather than aligning ourselves with one or other perspective on CFS/ME, we have sought to provide practical guidance for professionals and patients" [19].

I have to say that this statement is widely viewed as misleading and either self-deluding or somewhat hypocritical on Professor Baker’s part. Many patients/representatives know from bitter experience how flawed and unfair the so-called patient ‘consultation’ process was and view official UK ‘CFS/ME’ policy, of which NICE is only the capstone of a whole rotten pyramid, as a monumental stitch-up. In truth, official CFS/ME policy was largely a fait accompli before NICE took on its ridiculously restricted/biased remit and embarked upon fig leaf pseudo talks with patients. As patient GDG member Tanya Harrison stated, after resigning in protest from this dubious process: "…the guideline has not fully taken into account the patient and biomedical evidence, because if it had, then it would not be recommending the widespread use of CBT and GET." [20].

Indeed, and whilst it may be true that Professor Baker and colleagues did not give corporate-linked psychiatrists absolutely everything they wanted, to claim that patients had more influence, or even the same influence, over the NICE guideline development process in its entirety is patently false. This point needs to be firmly emphasised. As Peter White et al correctly point out in the BMJ: "The guidelines may seem too obvious to be useful, but this view underestimates the…disagreement about how to help patients. This guidance should remove arguments about…what a service should provide"[21]. Quite; what the psychiatric lobby clearly have achieved is a National Health Service mandate to effectively ignore biomedical evidence, withhold specialised science-based patient and laboratory investigations, essentially treat sufferers of multi-system physical disease as mental patients, use ineffective and contra-indicated CBT/GET ‘treatments’ as the primary intervention (for which at least some of these psychiatrists have financial self-interest). Also, NICE claims of patient ‘choice’ regarding such therapies are highly spurious: they need to be seen in the light of poor patient understanding, practitioner bias, the mental health act, the increasingly precarious legal status of ‘CFS/ME’ patients and the future requirements and chicanery of benefits and insurance organisations. For true ME patients, Unum-Provident’s/the DWP’s ‘Pathways to Work’ project will in reality mean worsened health and poverty. Rather than a pathway to work; for real ME patients, it is a descending stairway to hell: See patients’ CBT/GET bad experiences/survey and welfare support concerns at: www.25megroup.org

POST-ENLIGHTENMENT, POST-DEMOCRACY:

Establishment ME policy cannot be viewed in isolation: it is a part of an increasing general trend in which vested interests of power and money corrupt science, academia and public office for their own ends: as authors such as Noam Chomsky, Noreena Hertz, Michael Moore, John Pilger, Naomi Klein and many, many others have highlighted [22]. Whilst corporate influences over public policy grow, citizen influences diminish: to quote Sir Menzies Campbell MP on life under the New Labour Government (BBC Radio 4 Today programme on 3rd July 2007): "the public no longer has any influence on the way decisions are taken and has become alienated from the democratic process."

In the case of ME, such corporate-serving anti-science, anti-truth bias has tainted the Royal Colleges, the Chief Medical Officer’s Working Group, the MRC, the DoH, the DWP, the NHS, the (York) Centre for Reviews and Dissemination, the Cochrane Collaboration, the Science Media Centre (SMC) and more. Scientific establishment integrity and the historic 'enlightenment'  it was founded upon are rapidly diminishing in the UK and elsewhere. Inheritors and guardians of the enlightenment have become its subverters. Thankfully however, the genuine, independent science of many individual scientists is not dead - in spite of attempts to starve it of funds [23]. ME patients therefore have been unwittingly placed in the front line of a wider fundamental conflict. Upon close examination one will discover that they have found themselves doing more than just fighting for their own rights and good science, they are in fact part of a struggle to save our post-enlightenment society from a new vested-interest priesthood of power. Just like the ancient regime of our clerical past; modern day flat-earthers increasingly use political black arts in opposition to real science and knowledge to maintain their hold upon power and wealth. Even to the detriment of citizens’ health. A truly ‘enlightened’ society however is something that has to be constantly fought for because, as ever repeating history shows, power always tends to corrupt. Will humanity ever truly learn one wonders? Difficult, is it not, to avoid developing a certain feeling of Weltschmerz?

Make no mistake however; in ME, the psychiatric somatisation-in-place-of-proper-patient-assessment lobby will be exposed as the deceitful, anti-science cul-de-sac that it is: just as was the case with tuberculosis, multiple sclerosis, Parkinson’s, et cetera, et cetera. It is as inevitable as day follows night. The only question is when? And for how long will patient welfare - and lives - be sacrificed to avoid establishment egg-on-face and financial burden? What is clear however is that when citizens pay taxes and ‘insurance’ premiums – national or private – for science-based healthcare and welfare provision, they are entitled to get what they have paid for and not be fobbed-off in their hour of need. If publicly funded ministers, officials and doctors, as well as insurers, eschew good science and replace it with the spin of vested interest they should be called to account. Please help to do that. All the charges made in this article are backed up by documented fact; please verify this for yourself [24]. And pray that you or your children do not get ME. It can afflict anyone and is a terrible, debilitating and life-wrecking disease [25].

K Short. UK Myalgic Encephalomyelitis (ME) Sufferer. September 2007. contact@angliameaction.org.uk [Permission to repost.]

References:

* Note: the famous phrase "I see no ships" is in fact a misquote attributed to Admiral Horatio Nelson who, during the battle of Copenhagen in 1801, theatrically raised his telescope to his blind eye in order to ignore fleet signals and press on to attack his quarry: a very apt parallel for the world of ME politics

(Substantial footnotes in next post)

Tags: CFS, research, proof