Engaging w ith M.E. Engaging w ith M.E. Prof. Malcolm Hooper - - PowerPoint PPT Presentation
Engaging w ith M.E. Engaging w ith M.E. Prof. Malcolm Hooper Emeritus Professor of Medicinal Chemistry University of Sunderland Sparshalt College 14 November 2005 Arranged by Invest in M.E. in conjunction with Eastleigh & Winchester M.E.
Arranged by Invest in M.E. in conjunction with Eastleigh & Winch Arranged by Invest in M.E. in conjunction with Eastleigh & Winchester M.E. Support Group ester M.E. Support Group
N A P S B A T S THE MOST TOXIC WAR IN WESTERN MILITARY HISTORY
VACCINES
IoM 2000 >40 MAJOR EXPOSURES USA-UK CONGRESS-PARLIAMENTARY HEARINGS 2000,2002, 2004 (LLOYD REPORT Nov 2004)
OPs Carb OCs Pyreth DEET CWs N M E U R S V T E A A R g D
SYNDROMES OF UNCERTAIN ORIGINS Merck Manual 1999, 17th Edition GULF WAR SYNDROME GWS/I MILITARY ME MULTIPLE CHEMICAL SENSITIVITY ME-CFS FMS SOMATISATION- PSYCHIATRIC- IN THE MIND OPs NEUROLOGICAL- ANS, PNS, CNS CARDIOVASCULAR IMMUNE SYSTEM GASTROINTESTINAL RESPIRATORY ENDOCRINE SYSTEM “Considering the extent of the patients’ complaints and disability, the results of ROUTINE laboratory tests were strikingly NORMAL” S Straus
Evidence from Garth Nicolson, 1996. There is a close coincidence between the 30 symptoms of GWS and ME-CFS.
S Y M P T O M S O P s G W S M C S F M S C F I D S M S A I D S J O I N T P A I N + + + a r o u n d j o i n t a r e a + + + F A T I G U E + + + + + + + H E A D A C H E + + + + + + + M E M O R Y P R O B L E M S + + + + + + + S L E E P D I S T U R B E D + + + + + ? ? d u e t o m e d i c in e s + S K I N P R O B L E M S + + + + + b u r n in g s k i n + P R O B L E M S C O N C E N T R N + + + + + + + D E P R E S S I O N + + + + + + + M U S C L E P A I N + + + + + + + D I Z Z I N E S S + + + + + + + G .I . - I r r . B o w . + + + + + + + P E R I P H P A R E S T H E S / T I N G L I N G + + + + + + + C H E M / E N V I R S E N S I T I V I T Y + + + + + R e p o r t e d _ E Y E P R O B L E M S + + + + + + + A N X I E T Y + + + + + + + T A C H Y & / O R C H E S T P A I N + + + + + + + B R E A T H I N G P R O B L E M S + + + R e p o r t e d + + + L I G H T S E N S I T I V I T Y + / - + + R e p o r t e d + + _
+ L it e r a t u r e . R e p o r t e d = A n e c d o t a l
A d a p t e d f r o m J a c k i e B u r k h e a d
LINKS TO MODERN CHRONIC LITTLE-UNDERSTOOD ILLNESSES.
Letter from MAP to GP responsible for care of GWV-2001
MOST VETERANS DO NOT HAVE A FORMAL PSYCHIATRIC DISORDER Wessely et al BMJ 2002;325;576-9 THERE IS NOT AN EXCESS OF PTSD AMONG GWVs ~ 1-3% EXPLANATION - 2 SOMATISATION! ILLNESS DRIVEN BY A DISTURBED PSYCHE NO ORGANIC CAUSE(S) EXPLANATION - 1 WAR SYNDROMES - CRIMEA, BOER AND AMERICAN CIVIL WAR
Hyams KC, et al Annals Internal Med. 1996;125:398-405. Jones E, et al. BMJ 2002;324:324-4. Hooper M. 2002. http://bmj.com/cgi/eletters/324/7333/321.
LINK WITH OTHER CHRONIC ILLNESSES ESPECIALLY ME-CFS, MCS, OPs etc Hooper M http://bmj.com/cgi/eletters/325/7364/576
FUNCTIONAL SOMATIC SYNDROMES: ONE OR MANY? Wessely et al Lancet 1999;354:936-9 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 CANNOT EXPLAIN BY CONVENTIONAL PARADIGMS CONVENTIONAL THERAPY INEFFECTIVE MORE COMON IN WOMEN THAN MEN SHARE NON-SPECIFIC SYMPTOMS CLAIMED ALL THESE SYNDROMES RESPOND TO SAME THERAPIES, CBT/GRE.
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. 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
“I AM NO LONGER A PSYCHIATRIST. I RENOUNCE IT BECAUSE I BELIEVE CRUELTY IS AT THE CORE OF THE PROFESSION (AND ) I BELIEVE THAT THERE IS SOMETHING INHERENT IN THE PROFESSION THAT TENDS TO BRING OUT ANY CRUELTY LURKING WITHIN. I HAVE LONG WONDERED WHY THIS PROFESSION……WHICH OUGHT TO BE SO COMPASSIONATE …HAS IT SEEMS TO ME, TURNED ITS BACK ON HUMANITY” Facets of Diamond, 2003
DR JOHN DIAMOND- FORMER PSYCHIATRIST
Quoted in Mental Health Movement: Persecution of Patients? Hooper et al 2003
DEFINITIONS AND NAMES ARE CRITICAL PROGRESSIVELY ME HAS COME TO BE DEFINED AS CHRONIC FATIGUE SYNDROME WHICH IS A DIAGNOSIS OF EXCLUSION AND CRUCIALLY DEPENDS ON FATIGUE OF > 6 MONTHS ALL PHYSICAL SYMPTOMS AND BIOCHEMICAL MARKERS HAVE BEEN GRADUALLY REMOVED AND EVERYTHING DIRECTED TOWARDS A PSYCHIATRIC DEFINITION WHO - ICD 10 - G93.3 IS CLEAR MYALGIC ENCEPHALOMYELITIS IS A NEUROLOGICAL DISORDER ALLOWED ALTERNATIVE NAMES
POST-VIRAL FATIGUE SYNDROME, PVFS, CHRONIC FATIGUE SYNDROME, CFS
MANY DIFFERENT ILLNESSES AND CONDITIONS ARE ASSOCIATED WITH SIGNIFICANT FATIGUE- SO A CONFUSING “RAG BAG” OF ILL DEFINED PATIENTS HAVE BECOME LABELLED WITH FATIGUE
CANDIAN DEFINITION INSERT
1000 COPIES SOLD. http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
PRICE £4-00 p&p MY ATTEMPT TO MAKE SENSE OF OVERLAPPING SYNDROMES AND OFFER A COMPREHENSIVE UNDERSTANDING OF THESE COMPLEX CHRONIC ILLNESSES
DIRTY TRICKS AND DECEPTIONS! ONE SIMPLE STEP FROM NEUROLOGY TO MENTAL DISORDERS ICD-10 G93.3 TO ICD-10 F.48 SOMATISATION - MUNCHAUSEN MBP PSYCHIATRIC HEGEMONY AND THE MANUFACTURE OF MENTAL ILLNESS
Slingshot Publications, 2003 ISBN 0-9519646-4-X. £12-OO
MENTAL HEALTH MOVEMENT : PERSECUTION OF PATIENTS? Briefing paper for Countess of Mar House of Lords Debate 22-1-04 House of Commons Select Committee on Health
DOCUMENT: http://www.satori-5.co.uk/ word_articles/me_prof_hooper_3.html DEBATE: http://listserv.nodak.edu/scripts/wa.exe?A2=ind0401d&1=co- cure&F=&S+&P+1313
ACCORDINGLY- LORD NORMAN WARNER, PARLIAMENTARY UNDER SECRETARY OF STATE FOR HEALTH, WROTE TO THE COUNTESS OF MAR ON 11 FEBRUARY 2004 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. STATED CATEGORICALLY THAT THIS WAS NOT POSSIBLE OR ACCEPTABLE “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 WHO GUIDE TO MENTAL HEALTH AND NEUROLOGY IN PRIMARY CARE WILL HAVE ONLY ONE ICD-10 CODE FOR CFS- THIS IS G93.3
STILL IT GOES ON! 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 ! STEPHEN RALPH -12/6/04 www.meactionuk.co.uk
SAME COMBINING OF ME-CFS & FMS SAME OBSCURANTIST LANGUAGE OF VARIOUS COMBINED FUNCTIONAL SOMATIC SYNDROMES - USED IN ME, GWS, IBS, PMS - ALL ARE DISTURBED MENTAL & BEHAVIOURAL STATES. CLASSED UNDER WHO F.48.0 ALL CAN BE TREATED BY CBT, GET, PACING WITH ANTIDEPRESSANTS -Family Magazine Mar 2004 p.1-4 ALL PUT BLAME ON PATIENT AND REDUCE INSURANCE CLAIMS FOR BENEFITS AND SUPPORT
THE BATTLE CONTINUES ! 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 Psychoneuroendocrinology 2005;30:990-5 CURRENT CLINICS STILL WEIGHTED TOWARDS PSYCHIATRIC THEORIES AND PACING, CBT, GET WITH PSYCHIATRISTS IN CHARGE AT MENTAL HOSPITALS.
WHAT ARE WE DEALING WITH ? CHRONIC ILLNESSES - OFTEN SEVERELY DEBILITATING. 25% GROUP- SIMON LAWRENCE. OFFICIAL OBFUSCATIONS, DENIALS AND SOMETIMES DOWNRIGHT LIES ME- MYALGIC ENCEPHALOMYELITIS - CHRONIC FATIGUE SYNDROME - CFS- POST-VIRAL FATIGUE SYNDROME - PVFS EXCLUSIVELY UNDER WHO ICD-10 G 93.3 -NEUROLOGICAL ILLNESSES DECEPTION CLASSIFY UNDER WHO ICD-10 FATIGUE SYNDROMES
THE TRAP HAS BEEN SPRUNG WITH THE ESTABLISHMENT OF NEW CENTRES FOR THE TREATMENT OF ME BY PSYCHIATRIC TECHNIQUES- CBT, GRT AND PACING - TIED TO BENEFITS AND
M.E. = MYALGIC ENCEPHALOPATHY AUSTRALIA AND OTHERS Myalgic encephalopathy is not a classified disease/disorder and therefore places the patient outside the widely used internationally agreed systems- ICD -10 (WHO), DSM (USA)
CHRONIC FATIGUE SYNDROME 1994 Case Definition: Fukuda et al Ann Int Med Dec 1994 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 With 4 of the following: impaired memory/concentration Sore throat Tender cervical lymph nodes Myalgia Headaches of new type Unrefreshing sleep Post-exertional malaise Multi joint pain without swelling or redness
MAJOR COMMON FEATURES CANADIAN CONSENSUS PANEL CRITERIA FOR M.E. - 2003 POST-EXERTIONAL MALAISE & FATIGUE SLEEP DISORDERS PAIN NEUROLOGICAL /COGNITIVE MANIFESTATIONS 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 - Thermostatic instability- heat/cold intolerance, Anorexia
/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.
1992- Byron Hyde, Jay Goldstein, Paul Levine (Eds) ISBN 0-9695662-0-4-Nightingale Research Foundation 74 Chapters covering all aspects
Modern Techniques- SPECT , PET, MRI (MRS) Numerous Clinical Studies Multi system effects Effective Treatments
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 STUDY AND PATIENT CARE.
Brain blood flow by PET Scans differentiates ME/CFS from depression ISBN 0-7890-1127 Haworth Medical Press, 2001
CLASSICALLY ME IS AN ENTEROVIRAL INFECTION COXSACCHIE B IS A MAJOR CAUSATIVE AGENT IN ME. IRVING SPURR ANNUAL RESEARCH GROUP MEETING OCT 18TH 2005 “ENTEROVIRAL MYALGIC ENCEPHALO – MYELITIS”
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 , muscles 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-α, pleconaril [JR –pooled immunoglobulins early, choline + ascorbic acid.] 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
VARIOUS REPORTS AND STUDIES HAVE FOUND THAT SOME SUPPLEMENTS ARE HELPFUL NADH, SUCCINATE, CoQ 10 Dr Sarah Myhill BSAENM – www.drmyhill.co.uk ME/CFS is low grade heart failure arising from mitochondrial dysfunction Support mitochondrial functions – CoQ10 300-360 mg daily, L-carnitine 2000- 3000 mg daily, D-Ribose – 15 grams daily, Magnesium 400-800mg daily after Sinatra Coupled with MMMs, broad vitamin supplement,
A COMMON IMMUNOLOGICAL MECHANISM FOR M.E.
An in-depth considerqtion
Synthetase pathway as the basis for persistent and aberrant responses to intracellular microbial infections underlying ME/CFS CRC Press 2002 ISBN 0- 8493-1046-6
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 -
Gwen Kennedy PhD Faisel Khan PhD David Newton PhD Christine Underwood MD Alexander Hill PhD Margaret McLaren PhD Jill Belch MD FRCP Gwen Kennedy PhD Faisel Khan PhD David Newton PhD Christine Underwood MD Alexander Hill PhD Margaret McLaren PhD Jill Belch MD FRCP
DR VANCE SPENCE PhD- HONORARY RESEARCH FELLOW - NINEWELLS HOSPITAL - UNIVERSITY OF DUNDEE COURTESY OF DR VANCE SPENCE
www.meresearch.org.uk
Exclusion criteria: Medical condition known to cause fatigue Significant psychiatric disorders: Melancholic or psychotic depression Bipolar affective disorder Schizophrenia or psychosis Dementia Eating disorder Alcohol or substance abuse Morbid obesity The Specificity of the CDC-1994 Criteria for Chronic Fatigue Syndrome: Comparison Of Health Status in Three Groups of Patients Who Fulfill the Criteria GWEN KENNEDY, PHD, NEIL C. ABBOT, MSC, PHD, VANCE SPENCE, PHD, CHRISTINE UNDERWOOD, MBCHB, AND JILL J.F. BELCH, MD Ann Epidemiol 2004;14:95–100.
DEMOGRAPHICS
Number Age Mean (Range) Sex F:M Smoking Y:Ex:N BMI [kg/m2] Mean (Range) CFS/ME patients 48 47.5 (19-63) 30:18 6:2:40 26.2* (16.3-39.6) CFS/ME controls 34 45.9 (19-63) 21:13 5:2:27 23.9 (18.9-32.9) OP patients 25 47.7 (33-64) 3:22 2:4:19 28.0** (22.9-35.2) OP controls 18 45.9 (30-59) 3:15 3:2:13 25.2 (20.6-29.9) GW patients 24 39.7 (29-52) 1:23 12:4:8 30.6 # (18.1-38.6) GW controls 18 40.6 (29-52) 1:17 8:0:10 25.3 (20.8-33.2)
Unpaired t-test patients vs controls *p=0.01, **p=0.002, #p=0.0001
CFS/ME n=48 OP n=25 GW n=24 Sore Throat 25 (52%) 12 (48%) 11 (46%) Concentration/Memory Problems 48 (100%) 24 (96%) 24 (100%) Glands 27 (56%) 6 (24%) 9 (38%) Muscle Pain 45 (94%) 6 (24%) 9 (38%) Joint Pain 37 (77%) 19 (76%) 23 (96%) Headaches 28 (58%) 17 (68%) 21 (88%) Sleep 43 (90%) 18 (72%) 23 (96%) Post Exercise Fatigue 48 (100%) 24 (96%) 23 (96%)
1994 FUKUDA CDC classification symptoms [number (%)]
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) ME/CFS, OP & GULF WAR PF SF RP RE MH VT BP GH
WESSELY et al UNABLE TO DISTINGUISH BETWEEN SICK AND ‘WELL’ GWVs - JOEM 2003;45:668-675. OTHER CHRONIC ILLNESSES - SCORE < 72 HEART FAILURE, DIABETES, RECENT MI, COPD, DEPRESSION. Haley 2004 Lloyd Inquiry SF-36 SCORES MEAN OF GENERAL POPULATIONS
Blood flow responses to acetylcholine in 48 ME/CFS Patients v Matched Controls
1 2 3 4 5 6 7 8 9 10 1 mC 2 mC 4 mC 8 mC
Relative increase in skin blood flow
CFS Controls § * +
(Spence et al Dundee in press)
Oxidative Stress ↑ isoprostanes ↑oxLDL ↓ GSH ↓ HDL
HDL (mMmol/L) OxLDL (mU/mL) GSH (μmol/L) Isoprostanes (pg/mL) CFS/ME patients 1.32 (0.34)** 39.8 (13.9)# 1258 (260)* 462 (245)## CFS/ME controls 1.63 (0.46) 32.3 (10.9) 1370 (233) 332 (118) OP patients 1.20 (0.26)~ 35.8 (17.1) 1260 (299) 397(146) OP controls 1.46 (0.45) 35.0 (11.9) 1275 (183) 339 (118) GW patients 1.06 (0.20) 32.2 (12.0) 1209 (187) 367 (125) GW controls 1.22 (0.34) 34.2 (9.0) 1236 (211) 309 (106)
*p=0.05, ~p=0.025, #=p=0.02,**p=0.001, ##p=0.005
Chaudhuri A, Condon BR, Gow JW, Brennan D, Hadley M. Brain Imaging 2003;14:225-8. Chaudhuri A, Behan PO. In vivo magnetic resonance spectroscopy in chronic fatigue syndrome. Prostaglandins Leukot Essent Fatty Acids. 2004;71:181-3 Basant Puri et al Acta Psychiatr Scand 2002;106:224-6 Using MRS found Choline /creatine ratio was significantly higher in ME patients with loss of normal spatial distribution of Choline than controls. Abnormality of phospholipid metabolism in brain in CFS. Cf John Richardson
WURTMAN et al Biochem Pharmacol 2000;60:989-992
ORAL CDP-CHOLINE INCREASES MEMBRANE PHOSPHATIDE SYNTHESIS IN THE BRAIN AND RAISES LEVEL OF CIRCULATING CHOLINE AND URIDINE. NOW BEING MARKETED VIA M.I.T. AS AN EFFECTIVE TREATMENT THAT OPTIMISES NEURONAL FUNCTION AND STRUCTURE THE CHOLINE STORY- JR’s MIXTURE
Microarray RT-PCR Fold expression is comparable between microarray and RT-PCR 15 genes were upregulated, and one downregulated (IL-1RA)
ROBERTO PATACARA-MONTERO MD PhD HCLD
Christopher P - BCG, OSTEOPOROSIS/PAENIA 12 yrs
September 2005
RECOGNISES MULTISYMPTOM, MULTISYSTEM, MULTIORGAN ILLNESSES. APPENDICES- GWS, MCS, ME-CFS SENIOR CLINICAL EXPERT
RESPIRATORY MEDICINE, ALLERGY REPORT GENETICS PAPER
MAJOR TWO-PHASE POPULATION STUDY OF MCS. Atlanta Georgia. USA.Randon Sample 1582 12.6% Hypersensitivity 13.8% [1.8% total ] lost jobs 27.5% initiated by pesticides 27.5% initiated by solvents 1,4% emotional problems BEFORE exposures 37.7% emotional problems developed AFTER exposures
“SUGGESTS MCS HAS PHYSIOLOGIC NOT PSYCHOLOGIC ETIOLOGY”
Caress & Steinemann. Ehp 2003;111:1490-7
Messenger overlaps between the nervous, immune, and endocrine systems. Abbreviations: ACTH, adrenocorticotropic hormone; CRH, corticotropin-releasing hormone; TNF, tumor necrosis factor; VIP, vasoactive intestinal peptide. COMPREHENSIVE INTEGRATED DEFENCE SYSTEM NEI FOR MCS Rowat Ehp 1998;106(Suppl 1):85-109.
38% 27% 20% 13% 57% 0% 10% 20% 30% 40% 50% 60% TYPE OF AGE NCY Benefits Agency Social Services Primary Care Trust NHS Hospitals Alternative Practitioners
AGENCIES REGARDED AS ACCEPTING ME AS A LONG-TERM SERIOUS ILLNESS
61% 118 NO 39% 77 YES ADEQUATE CARE PACKAGE RECEIVED 55% 242 NO 45% 195 YES HAVE HAD COMMUNITY CARE ASSESSMENT 71% 310 NO 29% 127 YES HAVE A SOCIAL WORKER/CARE MANAGER % NOS. YES/N O COMMUNITY CARE ASSESSMENT
COMMUNITY CARE 61% FELT CARE PACKAGE INADEQUATE
Several people reported ONLY receiving an adequate care package following a HIGH COURT JUDGEMENT IN CLAIMANTS FAVOUR!.
44% 74% 76% 43% 0% 10% 20% 30% 40% 50% 60% 70% 80% Personal Care Preparation of Meals/Shopping Domestic Care Social Needs Service
PERSONAL CARE
58% 130 NO 42% 93 YES WAITED OVER 6 MONTHS FOR OT ASSESSMENT 47% 105 NO 53% 118 YES OTA FULFILLED DISABILITY REQUIREMENTS 49% 214 NO 51% 223 YES HAVE HAD OT ASSESSMENT CARRIED OUT % NOS. YES/NO OCCUPATIONAL THERAPY ASSESSMENT (OTA)
OCCUPATIONAL THERAPY ASSESSMENT
57% 70% 33% 43% 0% 20% 40% 60% 80%
Home Adaptations Mobility Equipment Specialist Disability Equipment Disability Support Services
DISABILITY AIDS REQUIREMENTS ONLY 20% OF CARERS HAD HAD THEIR NEEDS ASSESSED 87% DID NOT FEEL VALUED BY SOCIETY
53% 38% 9% GP HOME VISITS
Never Periodically Regularly
49% 9% 4% 8% 8% 22% ALTERNATIVE FORMS OF THERAPY 49% 12% 8% 6% 8% 18% COUNSELLING 46% 12% 8% 8% 7% 20% PHYSIOTHERAPIST VISITS 40% 6% 8% 10% 8% 27% CONSULTANT VISITS 26% 2% 3% 5% 12% 51% GP VISITS 41% 9% 8% 8% 11% 23% DISTRICT/PRACTICE NURSE VISITS 5 4 3 2 1 FORMS OF DOMICILIARY SERVICES REQUIRED
1 2 3 4 5 0 WHO WOULD YOU LIKE TO SEE MOST?
50% 2% 2% 5% 8% 35 % PAIN SPECIALIST 52% 2% 2% 6% 8% 29 % ENDOCRINOLOGIST 79% 10% 4% 3% 1% 4% PSYCHIATRIST/PSYCHOLOGIST 33% 1% 1% 3% 6% 56 % NEUROLOGIST 5 4 3 2 1 OUT-PATIENT VISITS/SPECIALIST REFERRALS
PREFERRED REFERRAL?
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 * SO WHY HAS £8.2 MILLION BEEN COMMITTED TO CLINICS OFFERING ONLY THESE TREATMENTS?
4 MAJOR SURVEYS AMONG ME-CFS PATIENTS ♦ MEA CBT/GET NO VALUE AND CAN MAKE SOME PEOPLE WORSE. ♦GET MOST COMMONLY MAKES PEOPLE WORSE ♦ PHYSICIANS WERE WARNED OF POSSIBLE LEGAL CONSEQUENCES OF PRESCRIBING CBT/GET THAT MIGHT LEAD TO CLAIMS AGAINST THEM FOR INAPPROPRIATE THERAPEUTIC INTERVENTION- MEDICAL WELFARE BULLETIN [CHARLES SHEPHERD?] DEATH IN GYM AFTER REFERRAL! 25% GROUP MEA (CHARLES SHEPHERD) AfME DORIS JONES - INDEPENDENT RESEARCHER INDEPENDENT RESEARCH STUDY - INEFFECTIVE CBT NO DIFFERENCE AFTER 17 MONTHS ( Dr M Sharpe) FROM “RAG BAG” OF PATIENTS SOME ARE HELPED TO A DEGREE BUT THESE ARE NOT ME PATIENTS
Assurances given that the new ME/CFS services would operate independently from the psychiatric service. THIS IS NOT THE CASE. Appointment letters headed “THE BIRMINGHAM AND SOLIHULL MENTAL HEALTH TRUST” WHOSE ADDRESS IS QUEEN ELIZABETH ALL MEETINGS OF THE ME/CFS STRATEGY GROUPHELD WITHIN THE LOCKED QEPH “Accordingly the ME Support Group has advised their patient representative TO DISENGAGE FROM FURTHER PARTICIPATION OR DIALOGUE UNTIL … SUCH TIME AS THE GROUP IS SATISFIED THAT SUCH ASSURANCES HAVE BBEN GIVEN”. STOP PRESS – THE DWP IS TO REVISE ITS PROCEDURES AND REGULATIONS HAVING RECOGNISED THE SERIOUS NATURE OF ME/CFS AS AN ORGANIC ILLNESS
+44 1603 74614 www.MEsupportNorfolk.org.uk/media DVD £3-50 HOOPER AND CARRUTHERS INFORMATION CONTACTS EXPERTS COMMENTS Home: 001 604 261 9320 Office: 001 604 224 1515 e-mail bcarruth@telus.net A PARLIAMENTARY INQUIRY Dr IAN GIBSON MP –NORWICH NORTH- HOUSE OF COMMONS LONDON SW1A 0AA SETTING UP A PARLIAMENTARY GROUP TO RECEIVE THE EVIDENCE. Des Turner, Richard Taylor, Ann Cryer, David Taylor WHO WILL GIVE EVIDENCE FROM HERE? TO 2 CASTLE MALL, CASTLE MEADOW, NORWICH NR1 3DD OR HOUSE OF COMMONS.