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PARLIAMENTARY INQUIRY, CHAIR Dr I Gibson MP NORWICH NORTH ORAL HEARING TO THE GROUP ON SCIENTIFIC RESEARCH INTO ME HOUSE

PARLIAMENTARY INQUIRY, CHAIR Dr I Gibson MP NORWICH NORTH ORAL HEARING TO THE GROUP ON SCIENTIFIC RESEARCH INTO ME HOUSE OF COMMONS 10 TH JULY 2006. Malcolm Hooper PhD, B Pharm, MRIC, CChem Emeritus Professor of Medicinal Chemistry University of Sunderland, UK

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PARLIAMENTARY INQUIRY, CHAIR Dr I Gibson MP NORWICH NORTH ORAL HEARING TO THE GROUP ON SCIENTIFIC RESEARCH INTO ME HOUSE

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  1. PARLIAMENTARY INQUIRY, CHAIR Dr I Gibson MP NORWICH NORTH ORAL HEARING TO THE GROUP ON SCIENTIFIC RESEARCH INTO ME HOUSE OF COMMONS 10TH JULY 2006 Malcolm Hooper PhD, B Pharm, MRIC, CChem Emeritus Professor of Medicinal Chemistry University of Sunderland, UK Chief Scientific Advisor to the UK Gulf War Veterans Terms of reference 1. Increase Public Understanding of Scientific Research into ME/CFS. 2. Evaluate progress in the Development of a full programme of research into ME/CFS. 3. Identify Research and Funding Requirements in Establishing the Cause(s) of ME/CFS.

  2. SYNDROMES OF UNCERTAIN ORIGINS Merck Manual 1999, 17th Edition GULF WAR SYNDROME GWS/I MILITARY ME MULTIPLE CHEMICAL SENSITIVITY OPs COMPLEX MULTI-SYSTEM & MULTI-ORGAN ILLNESSES 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

  3. 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

  4. 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

  5. THE NAME CASE DEFINITION & CLASSIFICATION CRUCIAL MYALGIC ENCEPHALOMYELITIS = MUSCLE PAIN, INFLAMMATION OF THE BRAIN AND SPINAL CORD [1969] ICD-10 G93.3 DISORDERS OF THE NERVOUS SYSTEM. (Allowed Alternatives - Chronic Fatigue Syndrome, CFS [1988] Postviral Fatigue Syndrome, PVFS) LATEST ICD-10 6TH REVISION 2006 G93.3 INCLUDES ONLY POSTVIRAL FATIGUE SYNDROME (BENIGN) MYALGIC ENCEPHALOMYELITIS Prof Anton Komaroff (MERGE DVD) “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.” CHRONIC FATIGUE SYNDROME HAS BEEN DROPPED FROM G.93.3 (2006)

  6. ME CASE DEFINITION, CLASSIFICATION AND NOMENCLATURE (Cont) ME is NOT Fatigue Syndromes ICD-10 F.48.0 Mental and Behavioural Conditions ICD-10 6TH REVISION –F.48.0 Mental & Behavioural includes Neurasthenia / Fatigue Syndrome EXPRESSLY EXCLUDES ME PVFS G.93.3. MALAISE AND FATIGUE R. 53. NOT Chronic Fatigue - many causes, Amer Med Assoc 1990 NOT Deconditioning – cortisol responses differ –Mommersteeg et al & Burnett. NOT Clinical Depression fails clinical tests – eg. blood flow in the brain – Richardson, Hyde, Carruthers. A study from Harvard, 1990, was unable to correlate an immunologic abnormality with the degree of depression.

  7. NOT SOMATISATION - somatic symptoms [that] lack any basic similarity to known mental disorders. Reclassifying BODILY symptoms as MENTAL problems…where CONVENTIONAL medicine is at a loss for an explanation. Dalen. NOT Biopsychosocial BPS, model NO CREDIBLE INTELLECTUAL FOUNDATIONS based on fraud and ignorance and a complete misunderstanding of the origins of the idea. It is a myth. McLaren

  8. CONFUSION AND DECEPTION AROUND CASE DEFINITION BEDEVILS PATIENT CARE & UNDERSTANDING, CARERS AND THEIR NEEDS, SUPPORT SYSTEMS BENEFITS, INSURANCE, CLINICAL TREATMENT AND RESEARCH STUDIES.

  9. MENTAL HEALTH MOVEMENT : PERSECUTION OF PATIENTS? Briefing paper for Countess of Mar, Dec 2003 House of Lords Debate 22-1-04 House of Commons Select Committee on Health http://www.satori-5.co.uk/ word_articles/me_prof_hooper_3.html -DOCUMENT http://listserv.nodak.edu/scripts/wa.exe?A2=ind0401d&l=co-cure&F=&S=&P=1313 - DEBATE.

  10. IN THE DEBATE IT WAS CLAIMED THAT IT WAS ACCEPTABLE FOR ME-CFS TO BE PLACED IN TWO DIFFERENT CLASSIFICATIONS IN ICD-10 NEUROLOGY , G.93.3 AND MENTAL AND BEHAVIOURAL, F.48.0 THE W.H.O. DECLARED THAT THIS WAS NOT POSSIBLE NOR ACCEPTABLE ACCORDINGLY- LORD NORMAN WARNER, PARLIAMENTARY UNDER SECRETARY OF STATE FOR HEALTH, WROTE TO THE COUNTESS OF MAR ON 11 FEBRUARY 2004 “THE UK ACCEPTS ICD-10, AND THEREFORE AFTER IT WAS POINTED OUT THAT THE RELATIVELY NEW TERM CHRONIC FATIGUE SYNDROME HAS BEEN INDEXED TO THE NEUROLOGY CHAPTER, CORRESPONDING ADJUSTMENTS WERE MADE TO THE WEB VERSION OF THE FIRST EDITION OF THE GUIDELINES, AND AN ERRATUM NOTE HAS BEEN PLACED ON THE RSM WEBSITE.” “THE SECOND EDITION OF THE UK WHO GUIDE TO MENTAL HEALTH AND NEUROLOGY IN PRIMARY CARE WILL HAVE ONLY ONE ICD-10 CODE FOR CFS- THIS IS G93.3 DISCLAIMER ISSSUED

  11. There is clear EVIDENCE of PATIENT & CARER ABUSE to such an extent that it could be REGARDED AS INSTITUTIONALISED/EPIDEMIC. Child X Ean Proctor Sophia MSBP DENIAL OF BENEFITS & SUPPORT COERCION, FORCED REMOVAL, SECTIONING, SEPARATION, ISOLATION, DISBELIEF, INAPPROPRIATE TREATMENT WITH DANGEROUS CONSEQUENCES, ABANDONMENT. POST MORTEM FOUND EXTENSIVE (75%) INFLAMMATION OF DORSAL ROOT GANGLIA OF THE SPINE CONSISTENT WITH A VIRAL INFECTION

  12. McEvedy & Beard – ROYAL FREE – MASS HYSTERIA [PhD –BMJ 1970] TOTALLY BOGUS RESEARCH – NO PATIENTS EXAMINED – NO STAFF PHYSICIANS INTERVIEWED- NO IN-DEPTH EXAMINATION OF THE RECORDS

  13. Provides an abundance of CLINICAL SIGNS THAT VALIDATE PATIENTS’ SYMPTOMS. OBJECTIVE CRITERIA FOR CASE DEFINITION AND DIAGNOSIS

  14. 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.

  15. FUKUDA and EARLIER DEFINITIONS NOT ADEQUATE AND IGNORE VITAL RESEARCH STUDIES – Spence et al 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”. CFS-ME vs. CFS/ME with PSYCHIATRIC COMORBIDITY –MAJOR DEPRESSIVE DISORDER CURRENT CDC 1994 DEFINITION INADEQUATE – CANADIAN BETTER. NEUROCOGNITIVE FUNCTIONING MANY NEARLY NORMAL IN SOME TESTS- SF-36. SOCIODEMOGRAPHIC – LOWER RATING MORE DISABILITY MEDICAL – VIROLOGY – IMMUNOLOGY- NEUROENDOCRINOLOGY – ANS- NEUROLOGY – GENETICS- TREATMENTS. CBT – ZERO AFTER 3 YRS

  16. Dr M Sharpe Edinburgh International Science Festival, April 10th 2004 “Groups should be as mixed as possible – no definition” “we widened the terms of referral in order to ENHANCE RECRUITMENT” Inclusion/Exclusion Criteria MRC trial of Pacing, CBT, GET. (White & Wesseley) Dr A Pinching Did not accept that evidence existed to justify treating different sub-groups of patients differently…more appropriate ……to respond to their individual needs under the BROAD umbrella term (CFS?) “Our worries about names, causation, mechanisms which OK are FUN ….can be understood by others as a reason for inaction….over investigation can be harmful…..causing them to seek abnormal test results to validate their illness” “over-investigation can be harmful and counter-productive to the management of these patients, causing them to seek abnormal test results to validate their illness” [ROUTINE TESTS NORMAL] “patients avoid activity but then develop symptoms of deconditioning or excessive awareness of physiological changes” [NOT DECONDITIONING]

  17. “cognitive behaviour therapy can substantially optimise rehabilitation” [93% 25% GROUP FOUND IT UNHELPFUL, JASON 0 after 3 years] “complementary therapists sometime reinforce unhelpful illness beliefs” “the essence of treatment is activity management and graded exercise”. [95% 25% GROUP FOUND GET UNHELPFUL- INCREASES OXIDATIVE STRESS, SPENCE] “CFS is “not related to ongoing exertion”: [POST EXERTIONAL MALAISE] “It seems appropriate to regard CFS/ME as a single clinical entity…(the question of sub-groups) may be considered a matter of semantics and personal philosophy…”. [CANADIAN CRITERIA, JASON, SPENCE] THIS IS NOT SCIENCE- NO CLARITY - OBFUSCATION

  18. SOUTH OF TYNE CFS SERVICE 28TH JUNE 2006- SERVICE PLANNING PROCESS “the Service WOULD OPERATE FROM AND BE BASED ON THE BIOPSYCHOSOCIAL FRAMEWORK” Dr Tony Wells- Clinical Consultant Psychologist ALL THE LOCAL/REGIONAL GROUPS INVOLVED IN THE PLANNING PROCESS HAD REJECTED THE BPS MODEL FOR THE SERVICE. BUT IT WAS STATED ON THE DAY THAT IT WOULD STILL BE THE BASIS OF THE SERVICE. THIS FRAMEWORK WAS REJECTED ON THE DAY! BY THE LOCAL GROUPS THIS IS DECEPTION AND IMPOSITION OF A PRE-PLANNED SERVICE WITHOUT LISTENING TO THE VOICE OF THOSE MOST INVOLVED.

  19. CMO Dr Colin Blakemore- “DO NOT NEED TO KNOW THE CAUSE OF ANY DISEASE IN ORDER TO TREAT IT” APPG [CANCER!, RA! MS! etc] MRC IS NOT INTERESTED IN FUNDING BIOMEDICAL ME RESEARCH DESPITE MAJOR ADVANCES IN HIGH QUALITY STUDIES. SPENCE et al, KERR RSM – PSYCHIATRY/NEUROLOGY Promoting Effectiveness, Cost, Acceptability, Health Interventions Effective Health Care Bulletin 2002;7:1-12 Interventions for the management of CFS/ME supports CBT NICE funded publication with acknowledgements to Hutchinson, Pinching, Clarke, White, Wessely

  20. MORE OF THE SAME Psychoneuroendocrinology 2005;30:990-5 “The theory is supported by recent research and may result in better handling of patients … DO NOT LISTEN TO YOUR OWN BODY’S SIGNALS DO NOT TRUST YOUR FEELINGS DO NOT TRUST YOUR THOUGHTS”

  21. CURRENT CLINICS AND THE TREATMENT OFFERED ARE FAILING AND CONDEMNED BY PATIENTS. THEY LARGELY RUN BY PSYCHIATRIST/PSYCHOLOGISTS AND ESPOUSE SOMATISATION & THE BIOPSYCHOSOCIAL MODEL AND OFFERING LARGELY PACING, CBT, GET, DESPITE PATIENTS PROTESTS AND REJECTION WHEN CONSULTED. West Kent Chronic Fatigue Service –CONFUSES PEOPLE WITH ME WITH OTHERS HANTS, SOUTHAMPTON, WINCHESTER & EASTLEIGH, BIRMINGHAM, SHROPSHIRE, LONDON, SURREY, LEICESTER, MANCHESTER, YORKS, SUFFOLK, DEVON, DORSET, SUSSEX, NORWICH, NORFOLK, SCOTLAND & WALES RiME www.erythos.com/RiME/Docs/NL0605.rtf ALL SAY NO!

  22. N E I NEUROENDOCRINEIMMUNE PARADIGM (NEI) PSYCHONEUROIMMUNE (PNI)- INTELLECTUAL FOUNDATION OF ME AND OVERLAPPING SYNDROMES MANY MESSENGER MOLECULES ARE INVOLVED IN THE COMMUNICATIONS BETWEEN THE BRAIN, NERVOUS SYSTEM, IMMUNE AND ENDOCRINE SYSTEMS. DISTURBANCE OF ONE SYSTEM WILL OFTEN LEAD TO DISTURBANCES IN ANOTHER.

  23. AREAS FOR RESEARCH- AETIOLOGY AND PATHOGENESIS IMMUNOLOGY – AETIOLOGY, INFLAMMATION, hs CRP, MARKERS FOR OXIDATIVE STRESS. ROLE OF TOXINS, SHARED MECHANISMS CARDIOVASCULAR – HEART AND VACULITIS, INCLUDING MITOCHONDRIAL ENERGY METABOLISM (SPENCE et al, MYHILL, McLAREN–HOWARD) ENDOCRINOLOGY – SLEEP, PROLACTIN & CORTISOL RESPONSES GENETICS (KERR) DIAGNOSIS- CANADIAN GUIDELINES EARLY ASSESSMENT FOR CHILDREN + Spence et al SIMPLE SINGLE TESTS- SPECT SCAN (HYDE) OTHERS MRI, PET, MRS (PURI, CHAUDHURI) MARKERS FOR OXIDATIVE STRESS –hsCRP, PROSTANES, etc SPENCE et al TREATMENTS-POOLED Hu IgG- ADOLESCENTS (RICHARDSON et al)ANTIVIRALS -VALGANCYCLOVIR (HERPES), PLECONARIL, DOXYCYCLINE, CLARITHROMYCIN (OTHER ORGANISMS-CHLAMYDIA, BORELIA, MYCOPLASMA) INTERFERONS (KERR), AMPLIGEN etc (DER MEIRLEIR) CHOLINE + ASCORBIC ACID (RICHARDSON) ANTI-OXIDANTS MITOCHONDRIAL SUPPORT (MYHILL) Mg, CARNITINE, NIACIN, CoQ10, RIBOSE

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