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Mind Games: ME-dical malPRACTICEs ? 28th May 2010 Bispebjerg Hospital, Copenhagen

Mind Games: ME-dical malPRACTICEs ? 28th May 2010 Bispebjerg Hospital, Copenhagen 1 st Danish ME/CFS Association Conference with The European Society for ME (ESME) . Malcolm Hooper PhD, B Pharm, ARIC, C Chem Emeritus Professor of Medicinal Chemistry, University of Sunderland, UK.

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Mind Games: ME-dical malPRACTICEs ? 28th May 2010 Bispebjerg Hospital, Copenhagen

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  1. Mind Games: ME-dical malPRACTICEs ? 28th May 2010 Bispebjerg Hospital, Copenhagen 1st Danish ME/CFS Association Conference with The European Society for ME (ESME) Malcolm Hooper PhD, B Pharm, ARIC, C Chem Emeritus Professor of Medicinal Chemistry, University of Sunderland, UK ME (female) 4 vs CFS (male) 1 With thanks to Michael Maes for the title

  2. THE BIG DIVIDE SOMATISATION ALL IN THE MIND PSYCHOSOCIAL COMPLEX CHRONIC MULTI-SYSTEM CONDITION BIOMEDICAL BASIS • CLAIMS • EVIDENCE • POLICY

  3. MYALGIC ENCEPHALOMYELITIS IS A –COMPLEX - CHRONIC - MULTI-SYSTEM ILLNESS [MUS, PUPS, MUPS – ‘UNEXPLAINED’ ILLNESSES- VANISH] “Everything that cannot be understood does nevertheless not cease to exist.” Blaise Pascal (1623-1682) “I might be criticised for presenting alarming material [about ME] but I have tried to present the truth and this in perspective” Dr John Richardson (1915-2002 50 years study)

  4. Compiled by Natalie Boulton

  5. www.jivalobo.com/invisibleME Making the invisible – visible LISTEN TO PATIENT VOICES History- History- History Listen to Patient and to Patient’s Parents – especially the Mother. John Richardson -1999 John Chia 2010

  6. LINDA – VERY SEVERE ME - >20 YEARS. TOUCH, LIGHT, SOUND - ARE AGONY PHOTO/ PAINTING BY HUSBAND GREG PAIN PARALYSIS

  7. SYNDROMES OF UNCERTAIN ORIGINS Merck Manual 1999, 17th Edition GULF WAR SYNDROME GWS/I MILITARY ME MULTIPLE CHEMICAL SENSITIVITY OPs MULTI-SYSTEM & ORGAN NEUROLOGICAL- ANS, PNS, CNS CARDIOVASCULAR IMMUNE SYSTEM GASTROINTESTINAL RESPIRATORY ENDOCRINE SYSTEM ME-CFS FMS “Considering the extent of the patients’ complaints and disability, the results of ROUTINE laboratory tests were strikingly NORMAL” S Straus SOMATISATION- PSYCHIATRIC- THEY ARE ALL IN THE MIND

  8. ME/CFS AND OTHER OVERLAPPING SYNDROMES.

  9. Decreasing objective information clinical, diagnostic, scientific, aetiological. WHAT’S IN A NAME? ME vs CFS WHO - ICD 10 - G93.3 (FROM 1969) IS CLEAR MYALGIC ENCEPHALOMYELITIS IS A NEUROLOGICAL DISORDER MUSCLE PAIN WITH INFLAMMATION OF THE BRAIN AND SPINAL CORD [THE ONLY ALLOWED ALTERNATIVE NAMES ARE POST-VIRAL FATIGUE SYNDROME, PVFS, CHRONIC FATIGUE SYNDROME, CFS] ME DESCRIBES A PATHOPHYSIOLOGICAL CONDITION WITH CLEAR MEANING FOR CLINICIANS AND ALLIED SCIENTISTS PVFS DESCRIBES AETIOLOGY (VIRUS INDUCED) + A SYMPTOM - FATIGUE CHRONIC FATIGUE DESCRIBES A SYMPTOM – SUBJECTIVE – PROVIDES NO OBJECTIVE CLINICAL SIGNS FOR DIAGNOSIS- MAKES MISCHIEF POSSIBLE NOT ENCEPHALOPATHY (NOT CLASSIFIED) –MYALGIC ENCEPHALOMYELITIS

  10. FUNCTIONAL SOMATIC SYNDROMES: ONE OR MANY? Wessely et al Lancet 1999;354:936-9 PSYCHOSOCIAL SCHOOLPARADIGM CANNOT EXPLAIN BYCONVENTIONAL PARADIGMS Gastroenterology – IBS, Non-ulcer dyspepsia Gynaecology – PMS, chronic pelvic pain Rheumatology – Fibromyalgia Cardiology – Atypical or non-cardiac pain Respiratory medicine – hyperventilation Infectious Disease – PVFS- ME-CFS Neurology – Tension headache Dentistry – TMJ dysfunction, Atypical facial pain ENT – Globus syndrome ALLERGY - MCS CONVENTIONAL THERAPY INEFFECTIVE MORE COMON IN WOMEN THAN MEN SHARE NON-SPECIFIC SYMPTOMS SYNDROMES RESPOND TO SAME THERAPIES, CBT/GET, PACING, PARTLY SUPPORTED– PATIENT SELECTION/DEFINITION CRUCIAL.

  11. MISREPRESENTATION AND WORSE FITNESS FOR WORK - OUP-2004 REPRINT £50-00 IN ASSOCIATION WITH RCP FACULTY OF OCCUPATIONAL MEDICINE WESSELY et al p.132 - incl, Maurice LIPSEDGE Consultant Psychiatrist KCL. BRIEF INFECTION (USUALLY VIRAL) >>> VULNERABLE PERFECTIONIST PERSONALITY + PRESSURE AT WORK EMPLOYEE SICKNESS ABSENCES>>> FATIGUE >>>> PROLONGED BED REST >>>> MALADAPTIVE BELIEFS >>> CHRONIC INVALIDISM>>> TERMINATION OF SERVICE ON MEDICAL GROUNDS. ALL LAZY CHILDREN - INACTIVE >>>> +/- PENSION ! Twisk & Maes 2009; Wessely & Wood , 1999! supply EVIDENCE SHOWING SOME OF THESE CLAIMS TO BE IN ERROR. STEPHEN RALPH -12/6/04 - www.meactionuk.org.uk

  12. Efficacy of CBT & GET - FROM THE “HORSES MOUTH”. “They reduce disability, & enhance control over symptoms”. “Modestly effective”. “Not remotely curative”. “These interventions are not the answer to CFS”. Why then spend £8.2 million on clinics etc ? Professor Simon Wessely, Journal American Medical Association Vol. 286, #11 Sept. 19, 2001. Read your own papers please! Twisk & Maes 2009 make same point

  13. A Psychiatric Condition? CHAPTER 7 Psychiatry and neuropsychiatry 7.6 “Nearly all studies find that between one-quarter to one-third of those who fulfil criteria for CFS do not fulfil ANY criteria for psychiatric disorder. Any simple equation of CFS with psychiatric disorder is thus erroneous”.

  14. SOMATIC MEDICINE ABUSES PSYCHIATRY – AND NEGLECTS CAUSES An almost TOTAL lack of SCIENTIFIC support Reclassifying BODILY symptoms as MENTAL problems…where CONVENTIONAL medicine is at a loss for an explanation. LACK OF firm KNOWLEDGE is converted into SPECULATIVE ASSERTIONS without any CRITICAL voices being heard. PD, MS, Diabetes Causal explanation for illnesses .. go with predominantly somatic symptoms [that] lack any basic similarity to known mental disorders. An evasive argument…with its lamentably poor record of research into causes, particularly where environmental factors are concerned. Industrial interests are actively influencing the course of what is ostensibly a scientific discussion. What makes an individual human being ill cannot be determined by statistics Lack of knowledge is a considerable handicap in the treatment of chronic diseases Per Dalen (Psychiatrist) http:art-bin.com/art/dalen_en.html Mercury, Lyme’s disease, placebo effect, toxicology, epidemiology

  15. N McLaren THE (BIO)PSYCHOSOCIAL MODEL and FRAUD This model is based on fraud and ignorance and a complete misunderstanding of the origins of the idea. It is a myth. “I see psychiatry under attack from all quarters. Some people see a great future for us. I don’t share that view. I believe there is a serious risk that psychiatry as we know it will no longer exist in as little as fifteen years. The reason is simply a lack of anything approximating an adequate intellectual framework for our efforts.” The myth of the biopsychosocial model.Australian and New Zealand Journal of Psychiatry 2006; 40 (3), 277-278 http://www.futurepsychiatry.com/Chapters 7 and 9 This model was the basis for the rejection of the Class Action brought by GWVs and persists still- see Phil Trans Royal Soc 2006;631:689-695.

  16. CHRONIC SYNDROME PSYCHIATRY/PSYCHOLOGY F48.0 NEUROLOGY G93.3 THE DECEPTION ! MYALGIC ENCEPHALOMYELITIS – CHRONIC FATIGUE SYNDROME AT G93.3 [NEUROLOGICAL DISORDERS] FATIGUE SYNDROMES CHRONIC FATIGUE [MENTAL & BEHAVIOURAL DISORDERS – F48.0] DUAL CLASSIFICATION IS NOT ALLOWED UNDER RUBRICS OF WHO

  17. NIH-CFS DEBATE, 2007 -19 YEARS AFTER DECISION • Dr Donna Dean • ME/CFS carries significant STIGMA for PATIENTS • MEDICAL COMMUNITY bears some responsibility for invalidating ME/CFS as a REAL condition. • PATIENT ADVOCACY bears come some responsibility – working at cross-purposes even among themselves. • NIH Panel MEMBERSHIP is SIGNIFICANTLY BIASED towards the BEHAVOURAL side of research. Prof Anton Komaroff “None of the participants in creating the 1988 CFS case definition and name ever expressed any concern that it might TRIVIALISE the illness. We were insensitive to that possibility and WE WERE WRONG. THE NAME DIVIDES – The medical community that has tried to abandon the use of ME, replacing it by CFS. Patients INSIST on using ME. BIGGEST DIVIDE: PSYCHIATRY, ALL IN THE MIND. SOMATISATION/SOMATOFORM DISORDER vs BIOLOGICAL- ORGANIC ILLNESS.

  18. 25% ME GROUP [THE SEVERELY AFFECTED-1/3/O4 RANDOM SAMPLE -437 = 66% OF MEMBERSHIP COMMENTS ON TREATMENTS GIVEN H% UNH% PERSON-CENTRED COUNSELLING 54 46 PSYCHOTHERAPY 10 90 CBT* 7 93 GET* 5 95 PACING* 70 30 ALTERNATIVE THERAPIES 60 40 SYMPTOMATIC CARE MANAG 73 30 PAIN MANAGEMENT 75 25 * £8.2 MILLION GOVERNMENT FUNDING HAS BEEN COMMITTED TO CLINICS OFFERING ONLY THESE TREATMENTS. WHY?

  19. Hooper, Williams with Members of the ME Community – 2010. Download www. meactionuk.org • Interventions – CBT, GET, Pacing, Stand Med Care • NO OBJECTIVE CRITERIA WERE USED- Exercise or Biological (White- Chief Investigator of the Trial, lead among Principal Investigators White, Sharpe, Chalder. In 2004, White showed raised levels of TNF-a sustained at least 3 days after exercise. He needs to read his own papers! )

  20. CFS – CBT - GET CBT IS NOT HARMLESS – TO IGNORE SYMPTOMS IS TO INVITE SERIOUS CLINICAL PROBLEMS- MISSED DIAGNOSES- MISDIAGNOSES see BYRON HYDE’S LATEST BOOK. GET IS POSITIVELY DANGEROUS LEADING TO EXTENSIVE RELAPES AND EVEN DEATH! BRYNMOOR JOHN MP ME + EXERCISE DIED ON WESTMINSTER BRIDGE IMMEDIATELY AFTERWARDS. SHORTENED LIFE EXPECTANCY/DEATH – HEART FAILURE 20.1% (58.7)[83.1]; CANCER19.4% (47.8)[72.0]; SUICIDE 20.1% (39.3)[48.0]

  21. CHRONIC FATIGUE SYNDROME – DEFINITIONS DETAILS 1994 Case Definition: Fukuda et al Ann Int Med Dec 1994 – this the most widely used clinically/Research. Oxford also still employed by some. • Characterised by: • Medically unexplained • Of new onset • At least 6 months duration • Not the result of ongoing exertion • Not substantially relieved by rest • Substantial reduction in previous activities OXFORD 1. Disabling fatigue of uncertain cause. 2. Psychiatric disorders not necessarily excluded. 3. Any identifiable biomedical illness excludes. SELECTS ONLY PSYCHIATRIC PATIENTS NOT ME-CFS. • With 4 of the following: • impaired memory/concentration • Sore throat • Tender cervical lymph nodes • Myalgia • Headaches of new type • Unrefreshing sleep • Post-exertional malaise (Some with ME-CFS) • Multi joint pain without swelling or redness

  22. 1994 FUKUDA CDC classification found wanting symptoms[number (%)] Kennedy, Spence et al Ann Epidemiol. 2004;14:95-100

  23. CANADIAN CONSENSUS PANEL CRITERIA FOR M.E. - 2003 MAJOR COMMON FEATURES • FATIGUE • POST-EXERTIONAL MALAISE & FATIGUE • SLEEP DISORDERS • PAIN • NEUROLOGICAL /COGNITIVE MANIFESTATIONS (2 or more) AT LEAST ONE SYMPTOM FROM 2 OF FOLLOWING CATEGORIES AUTONOMIC - NMH, POTS, Delayed Postural Hypotension, Low plasma and/or RBC volume, Vertigo, Light Headedness, Extreme pallor, Intestinal or Bladder, disturbances with IBS or Bladder dysfunction, Cardiac Arrhythmias, Vasomotor Instability, Respiratory Irregularities NEUROENDOCRINE - Thermostaticinstability- heat/cold intolerance, Anorexia or Abnormal Appetite, Marked weight change, hypoglycaemia, loss of adaptability /tolerance to stress and slow recovery from stress, emotional lability IMMUNE - tender lymph nodes, sore throat, flu-like symptoms, general, general malaise, development of new allergies or change in status of old ones, hypersensitivity to medications and/or chemicals.

  24. CANADIAN CRITERIA, 2003, SUB-GROUPS ESSENTIAL AND CHARACTERISED. Jason et al, 2005 showed need for sub-groups Roberto Patarca-Montero. JCFS 2000:7(4):1 “the sorting of patients into subpopulations….is helping in the design and interpretation of clinical trials for therapeutic interventions aimed at particular disease manifestations”. De MEIRLEIR –FROM RNase L etc IDENTIFIES 3 MAJOR SUB-GROUPS 1999- 2005. KERR et al 2005, 2007, 2010 - GENETICS - 8 CLINICAL PHENOTYPES, SNPs NEWTON et al. 2007 2 SUB-GROUPS - 75% ME-CFS patients have DYSAUTONOMIA WITH THEIR FATIGUE ALL HAVE DIFFERENT TESTING & TREATMENT IMPLICATIONS

  25. ME CLASSIFICATION AND NOMENCLATURE WHAT ME IS NOT! NOT a Fatigue Syndrome/Neurasthenia. ICD-10 G.93.3 NOT F.48.0 NOT Chronic Fatigue - many causes, Amer Med Assoc 1990 NOT Burnout – cortisol responses differ Mommersteeg et al NOT DECONDITIONING - Burnett, Newton. NOT CFS - Spence et al, Olanoet al NOT Clinical Depression fails clinical tests –Richardson et al and many others

  26. SUMMARY OF BIOMEDICAL EVIDENCE

  27. Twisk & Maes, 2009

  28. PF SF RP RE MH VT BP GH SF-36 SCORES MEAN OF GENERAL POPULATIONS ME/CFS, OP & GULF WAR PF= Physical Functioning (10); SF = Social Functioning (2); RP= Role Limitations Physical Problems (4); RE= Role Limitations Emotional Problems (3); MH=Mental Health (5); VT= Vitality/Energy (4); BP = Pain (2); GH = General Health (5) OTHER CHRONIC ILLNESSES - SCORE < 72 HEART FAILURE, DIABETES, RECENT MI, COPD, DEPRESSION. Haley 2004 Lloyd Inquiry WESSELY et al UNABLE TO DISTINGUISH BETWEEN SICK AND ‘WELL’ GWVs - JOEM 2003;45:668-675.

  29. MAJOR CHAPTERS ON VIRUSES Cardiovascular Consequences Central Nervous System Glandular Effects Pregnancy Neoplasms Toxins OCs mimic ME Treatment Considerations THIS IS A MAJOR CLINICAL WORK THAT REPRESENTS A LIFE TIME OF DEDICATED STUDYAND PATIENT CARE. Brain blood flow by PET Scans differentiates ME/CFS from depression ISBN 0-7890-1127 Haworth Medical Press, 2001

  30. 1992- Byron Hyde, Jay Goldstein, Paul Levine (Eds) 74 Chapters covering all aspects of ME-CFS Modern Techniques- SPECT , PET, MRI (MRS) Numerous Clinical Studies Multi system effects Effective Treatments

  31. Chia JKS. The Role of Enteroviruses in Chronic Fatigue Syndrome- A Review J Clin Pathol 2005;58:1126-32 Enteroviruses are well known causes of acute respiratory and gastrointestinal infections, with tropism for the central nervous system, muscle, and heart. Initial reports of chronic enteroviral infections causing debilitating symptoms in patients with CFS were met with skepticism, and largely forgotten for the past decade…….Recent evidence not only confirmed the earlier studies but also clarified the pathological role of viral RNA through antiviral treatment. Ribavirin, interferon-a [JR –pooled immunoglobulins early, choline + ascorbic acid.]

  32. THE HEART AND ENTEROVIRUSES Reetoo KN, Osman SA, Illavia SJ, Cameron-Wilson CL, Bantavala JE, Muir P. Quantitative analysis of viral RNA kinetics in coxsacchie B3- induce murine myocarditis….with persitence of residual viral RNA throughout and beyond the inflammatory phase. J Gen Virol 2000;81:2755-62 Lane RJM, Soteriou BA, Zhang H, Archard LC. Enterovirus related metabolic myopathy: a postviral fatigue syndrome. J Neurol Neurosurg Psychiatry 2003;74:1382-6. Peckerman A, Lamanca JJ, Dahl KA, ChemitigantiR, Qureseishi B, Natelson BH. Abnormal Impedance Cardiography predicts Symptom Severity in Chronic Fatigue Syndrome. Am J Med Sci 2003;326:55-60.

  33. Twisk & Maes, 2009. Pall 2007 Klimas et al Spence et al

  34. This is the first time that raised levels of the gold standard measure of in vivo oxidative stress (isoprostanes) and their association with CFS symptoms have been reported.

  35. McArdle et al FRBM 2005;39:651-7 Showing free radical (reactive oxygen species) increasing with exercise.

  36. Chronic Fatigue Syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise. Jammes et al J Intern Med 2005;257:299-310 In CFS there is – increased oxygen uptake by exercising muscle - exercise-induced oxidative stress was enhanced. hsCRP correlates beset with clinical status of ME patients – Spence et al unpublished data This is why GET is damaging to people with ME/CFS They start with a high ROS load which is rapidly increased. Part of strong evidence for ENCAPHALOMYELITIS vs NOT -OPATHY debate

  37. PUPPET MASTER MANY STR I NGS Cancer (Prostate,) Thyroid, NHL- Hyde Inflammation Cardiovascular Disease Vance Spence et al XMRV Genetics – Kerr et al, Gow et al RNaseL Immune Dysregulation –Autoimmunity De Meirleir et al Virus Susceptibility Enteroviruses Coxsacchie B Herpes EBV etc Richardson, Chia, Lerner XMRV SUMMARY SLIDE – ITS MAKES SENSE! COMPLEX I LLNESS ME MANY SYMPTOMS

  38. POLTICAL CONTROL OF HEALTH COSTS OF CHRONIC CONDITIONS AND CONCERNS OF INSURANCE INDUSTRY ABOUT COSTS REQUIRE M.E. TO BE DISMISSED BY FALSE EVIDENCE AND PATIENTS TO BE IGNORED. POLICY-BASED EVIDENCE [PACING, CBT, GET] WITH NO CREDIBLE INTELLECTUAL OR CLINICAL FOUNDATION VS EVIDENCE-BASED POLICY [BIOMEDICAL WITH SOUND SCIENTIFIC FOUNDATION PROVIDING TARGETED HEALTH CARE &TREATMENT FAILURE OF NATIONAL AND INTERNATIONAL HEALTH AND INSURANCE AGENCIES

  39. VISIT THE SICK – DO NO HARM –MEDICAL NEGLIGENCE/DERELICITON OF DUTY

  40. American Psychiatric Association’s Diagnostic and Statistical Manual for MENTAL DISORDERS, DSM –V. PROPOSED REVISION OF DSM 4 Excuse? RATIONALISE REVISION OF 1CD-10 TO ICD-11 categories of Mental Disorders with DSM. NEW CATEGORY! COMPLEX SOMATIC SYMPTOM DISORDER, CSSD. A. Somatic Symptoms- multiple & Distressing or ONE severe symptom B. Misattributions, Excessive concerns or pre-occupation with symptoms andIllness. At least 2 of + High level of health-related anxiety + Normal bodily symptoms are viewed as threatening and harmful. + Tendency to Assume Worst – catastrophising! + Belief in medical seriousness of their symptoms – despite contrary evidence + Health concerns assume a central role in their lives. Examples Abound – Severe and persistent Gastric upset and pain – occasionally blood, vomiting- sometimes relieved by eating but some foods cause more pain. Feel weak and tired, worried. What is it?

  41. M.E. (G93.3) is NOT a Mental and Behavioural Disorder (F48.0) – repeat 3 times – morning, noon and night !- until THIS FALSE BELIEF clears. IT IS FALSE ILLNESS BELIEF TO ASSERT M.E.HAS A PSYCHOGENIC ORIGIN IT IS MEDICAL MALPRACTICE AND NEGLIGENCE [CRUEL AND PERVERSE] 1. NOT TO READ AND FULLY CONSIDER ALL THE BIOMEDICAL EVIDENCE ABOUT M.E. ( >4000 PEER-REVIEWED PAPERS). DATA, DATA, DATA- READ –MARK – LEARN – INWARDLY DIGEST – ACT IN THE LIGHT OF THIS KNOWLEDGE 2. TO DENY APPROPRIATE TESTS TO CONFIRM THE ILLNESS. NICE GUIDELINE IS USELESS, Gibson Report. Testing is not advised/ proscribed 3. TO USE SUCH WILFUL IGNORANCE TO LIMIT AND DENY APPROPRIATE TREATMENTS & INSURANCE BENEFITS. 1. THE NAME MUST BE CHANGED- DROP CFS AND ANY REFEENCE TO FATIGUE SYNDROME(S). KEEP ICD 11 G93.3 EXCLUDE FROM F48.0 & DSM V 2. EXPLORE OTHER POSSIBILITIES BASED ON BIOMEDICAL EVIDENCE eg. RETROVIRAL DISEASES Chap 0.?

  42. THANK YOU FOR LISTENING

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