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

©K. Short, September 2007

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], as a serious physical illness, has yet again been augmented by peer-reviewed science (see: www.meresearch.org.uk). This time it is 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" nor "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 not science; 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:

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, "An Inconvenient Truth." 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. Ramsay, 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. 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 to his 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-Enlightement, 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.

[1] Professor Anthony Komaroff: Speaking at the USA CDC press conference on 3 November 2006. See: www.cdc.gov/od/oc/media/transcripts/t061103.htm.

[2] ME has been in the medical literature since the 1930s and recognised by the WHO since 1969. See: www.who.int/classifications/icd/en/.

[3] "Chronic Fatigue Syndrome is Associated with Chronic Enterovirus Infection of the Stomach" John K S Chia & Andrew Y Chia, J Clin Pathol 2007;0:1-6. doi:10.1136/jcp.2007.050054 - downloadable at: http://press.psprings.co.uk/jcp/september/cp50054.pdf. And see BBC News report online at: http://news.bbc.co.uk/1/hi/health/6990957.stm.

[4] See: Peckerman A, Lamanca JJ, Dahl KA, et al. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome of disease." Am J Med Sci. 2003; 326:55-60.

[5] Several studies have demonstrated this. See for example: Schwartz et al AJR (1994)162:943-951, and www.meresearch.org.uk, and www.nightingale.ca.

[6] Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms. Gwen Kennedy, Vance Spence et al. Free Radical Biology and Medicine (2005) 39:584-589. See also www.meresearch.org.uk and Dr Sarah Myhill, "CFS is Low Output Heart Failure Secondary to Mitochondrial Failure." www.drmyhill.co.uk/article.cfm?id=381

[7] Dr Sarah Myhill. "CFS is Low Output Heart Failure Secondary to Mitochondrial Failure." www.drmyhill.co.uk/article.cfm?id=381 And see: "CFS: The Heart of the Matter" - Dr Paul Cheney DVD Seminar 2006 at: www.dfwcfids.org/videos/video200609cheney_about.shtml. See: "Causes of Death Among Patients With Chronic Fatigue Syndrome." Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams, and Susan Torres-Harding. DePaul University, Chicago, Illinois. USA Health Care for Women International, 27:615-626, 2006. Routledge. Copyright C Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: doi: 10.1080/07399330600803766 www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005?crawler=true

[8] See: "A New and Simple Definition of Myalgic Encephalomyelitis and a New and Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis And An Irreverent History of Chronic Fatigue Syndrome." Dr Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at: www.nightingale.ca. See: "What is ME? What is CFS? Information for Clinicians and Lawyers." Malcolm Hooper, Eileen Marshall, Margaret Williams. At: www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

[9] See: Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment on Section 3 of: The diagnosis, treatment and management of chronic fatigue syndrome (CFS)/(ME) in Adults and Children, Work to support the NICE Guidelines, carried out by Anne-Marie Bagnall, Susanne Hempel, Duncan Chambers, Vickie Orton and Carol Forbes, Centre for Reviews and Dissemination, University of York October 2005'
Comment by Professor Malcolm Hooper & Horace Reid, January 2006. At: www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html.

[10] See: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols ('Canadian Criteria' - Full Version)." Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir, Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested, Pierre Flor-Henry, Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey, Marjorie I. van de Sande. Journal of Chronic Fatigue Syndrome. Volume 11, Number 1, 2003. At: http://fm-cfs.ca/CFS-Protocol.pdf.

[11] See: "What is ME? What is CFS? Information for Clinicians and Lawyers." Malcolm Hooper, Eileen Marshall, Margaret Williams. At: www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm.

[12] See SHS Box on page 10 of (and indeed the whole document): "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document" by Professor Bruce M. Carruthers and Dr Marjorie I. Van de Sande. UK - NHS Clinician Endorsed/A4 Format - Version: http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf.

[13] "Corporate Collusion." Hooper, Marshall, Williams, 2007. Available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm

[14] Invest in ME comments on the August 2007 NICE CFS/ME Guidelines, available at: http://www.investinme.org/IIME%20Campaigning-NICE-Guidelines%20IiME%20Response.htm

[15] "The Late Effects of ME -Can they be distinguished from the Post-polio syndrome?" available at www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html. And see: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies. Dr John Richardson. The Haworth Press, 2001. ISBN: 0-7890-1128-X.

[16] See: SKEWED: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by Martin J Walker, Slingshot Publications, ISBN: 0-9519646-4X. And see: "The Mental Health Movement: Persecution of Patients? ..Background Briefing for the House of Commons Select Health Committee." Professor Malcolm Hooper. At: www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

[17] See: "Inquest Implications?" Eileen Marshall, Margaret Williams, 16th June 2006 at: www.meactionuk.org.uk/Inquest_Implications.htm See: "The Inquest of Sophia Mirza." Sue Waddle, Invest in ME at: www.investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.htm See: "New Scientist: Sophia Mirza: Official UK death from chronic fatigue syndrome" at: www.newscientist.com/channel/health/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome-.html.

[18] See: "Causes of Death Among Patients With Chronic Fatigue Syndrome." Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams, and Susan Torres-Harding. DePaul University, Chicago, Illinois, USA Health Care for Women International, 27:615-626, 2006. Routledge. Copyright C Taylor & Francis Group, LLC. ISSN: 0739-9332 print/1096-4665 online DOI: 10.1080/07399330600803766 : www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005?crawler=true

[19] See: "NICE - 'Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy)' diagnosis and management guidelines" at: http://guidance.nice.org.uk/CG53.

[20] See BRAME statement on NICE, August 2007 at: www.brame.org/contact2.html.

[21] Peter White et al, British Medical Journal 2007:335:411-412. Also see the very telling BMJ 'Rapid Responses' to this article.

[22] See: Noam Chomsky. Profit Over People - Neoliberalism and the Global Order. Seven Stories Press, 1999. ISBN: 1-888363-82-7. See: Noreena Hertz. The Silent Takeover - Global Capitalism and the Death of Democracy. Arrow Books. 2002. ISBN: 0-09-941059-1. See: David C Korten. When Corporations Ruled the World. Earthscan Publications Ltd. 1997. ISBN:1-85383-434-3. See: Michael Moore's new film: Sicko. Information at: www.michaelmoore.com/sicko/index.html. See: The award winning film: The Corporation. Information at: www.thecorporation.com/.

[23] See: "Corporate Collusion" Hooper, Marshall, Williams, 2007. Available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm. And see: New Scientist Magazine, 26 February 2005. "Editorial: Which Scientists Can We Trust? Industry and Academia have become Entwined, Eroding Trust in Science - How Can We Restore it?" www.newscientist.com/article/mg18524883.100.html

[24] See: "Corporate Collusion" Hooper, Marshall, Williams, 2007. Available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm And generally visit www.meactionuk.org.uk, and www.investinme.org, and www.25megroup.org, and www.meresearch.org.uk.

[25] See: "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research." Professor M Hooper. J Clin Pathol 2007; 60:466-471. Doi: 10.1136/jcp.2006.042408. And see: "The Complexities of Diagnosis." Byron Hyde. In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003. And for a concise overview and history of ME & CFS see: "A New and Simple Definition of Myalgic Encephalomyelitis and a New and Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis And An Irreverent History of Chronic Fatigue Syndrome." Dr Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at: www.nightingale.ca.
For an overview of the clinical signs and research findings see: "Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome." Malcolm Hooper, Eileen Marshall, Margaret Williams (For Gibson Inquiry): www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc.
For interesting theoretical and research developments - with potential to unify biomedical findings and open up exciting new possibilities for a cure see: Professor Martin Pall, Washington State University: Explaining Unexplained Illnesses. Harrington Park Press, 2007. ISBN: 978-0-7890-2389-6.