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MMR Vaccine,
Thimerosal And Late-Onset
Briefing Note David Thrower July 2004
Contents
Executive Summary
Part A: A Novel Syndrome
1. What Is Acquired Autism/Autistic Enterocolitis 2. The New Syndrome
Part B: The Costs of Autism
3. The Financial Costs - Autism Is Costing The Taxpayer £$Billions 4. Overall Cost Estimates 5. Failure to Monitor Increases In UK Autism Numbers 6. “Now Almost Everyone Knows Someone Who’s Autistic” 7. Is Autism Increasing Due To Changes In Criteria? 8. Autistic Disorder 9. Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) 10. Asperger’s 11. University of Cambridge Research 12. University of Sunderland Research 13. UK National Autistic Society Estimates 14. Report by Fiona Loynes for UK All Party Parliamentary Group, Dec. 2001 15. Report, “Autism In Schools”, UK National Autistic Society May 2002 16. Is Autism Increasing? - Some Recent Official UK Pronouncements 17. Autism In The USA 18. Autism Elsewhere
Part C: MMR
19. The Introduction of MMR 20. Recognised Adverse Reactions to MMR 21. US Vaccine Adverse Events Reporting System 22. Contraindications To Receiving MMR 23. The UK Department of Health’s Position over MMR and Autism 24. Single Vaccines In The UK 25. Measles In The UK 26. Promotion of MMR In The UK After The Wakefield “Early Report” Controversy 27. Position of the US Center For Disease Control on MMR/Autism 28. The Parents Have Seen What They’ve Seen.....
Part D: The Thimerosal/Thiomersal* Issue (*the two terms are interchangeable)
29. Thimerosal’s Possible Role 30. Joint Statement by American Acad. Of Ped./Public Health Service, July 1999 31. Removal of Thimerosal 32. Waters & Kraus Press Release, 2002 33. US Use of Thimerosal - Statement by Dr. Geier, 2004 34. UK Vaccines With Thimerosal 35. UK Medicines and Healthcare Regulatory Agency Position on Thimerosal 36. UK Joint Committee on Vaccination * Immunisation Position on Thimerosal 37. US CDC Thimerosal Studies 38. Report, “Mercury In Medicines”, US Committee on Government Reform 2003 39. Letter to Congress by the US Office of Special Counsel, 2004 40. California Votes To Ban Thimerosal, June 2004
Part E: Reviews Questioning the Autism Epidemic
41. Paper by Fombonne, UK Medical Research Council, Pediatrics, January 2001 42. Paper by Wing, Centre for Social & Communication Disorders, London 2002 43. Position of Dr. B. S. Siegal, University of California, 2002 44. Study by Croen et al, July 2002 45. Editorial by Fombonne, Journal of the American Medical Asscn., January 2003 46. Paper by Jick et al, Boston Un. Sch of Medicine, Pharmacotherapy, Dec 2003
Part F: Evidence That Autism Increases Are Real
47. Close-Up On California 48. The MIND Study, California 49. Close-Up On New Jersey 50. Atlanta Study, 2003 51. Paper by Gurney, Fritz et al, Trends on ASD In Minnesota, 2003 52. Paper by F. E. Yazbak, Autism In The US - A Perspective, J of A Phs & Surg 2003 53. Paper by F. E. Yazbak, Autism In Quebec, 2004
Part G. Studies Used To Disprove Any MMR/Thimerosal/Autism Link
54. Limitations of Epidemiology - A Preface 55. Stokes et al paper, Journal of American Medical Association (JAMA), Oct. 1971 56. Study by Peltola and Heinonen, Lancet, April 1986 57. Paper by Miller, Miller et al, The Practitioner, January 1989 58. Gillberg Study, Sweden, British Journal of Psychiatry, 1991 59. Commentary by Gillberg and Heijbel, Autism, 1998 60. Letter by Fombonne, Pediatrics, March 1998 61. UK Committee on Safety of Medicines Study, June 1999 62. Paper By Taylor, Miller and Farrington, Lancet, June 1999 63. Paper by Miller & Farrington to US Government Reform Committee, April 2000 64. Patja, Peltola et al Study, Finland, Pediatric Infectious Disease Journal Dec. 2000 65. Kaye, Melero-Montez and Jick Study, British Medical Journal, 2000 66. Dales, Hammer and Smith Study, JAMA, March 2001 67. De Wilde, Carey & Richards Study, Br. Journal of General Practice, March 2001 68. Davis et al study, Archive Pediatrics Adolescent Medicine, 2001 69. Further Paper by Farrington, Miller and Taylor, Vaccine Journal, 2001 70. Fombonne & Chakrabarti Study, Pediatrics, October 2001 71. Further Paper by Taylor, Miller et al, BMJ.com, February 2002 72. Review by Donald and Muthu, Bazian Limited, pub British Medical Jnl June 2002 73. Study into Childhood Gastrointestinal Disorders and Autism, August 2002 74. Madsen et al, Population-Based study, MMR/Autism, Denmark, Nov 2002 75. Study on Mercury by Pichichero, Lancet, November 2002 76. Study by Makela et al, Finland, Pediatrics November 2002 77. Commentary by Nelson & Bauman, Pediatrics March 2003 78 Paper, Madsen et al, Thimerosal and Autism in Denmark, Pediatrics, Sep 2003 79. Paper by Hviid, Stellfeld et al, Denmark, J of American Med Assoc Oct 2003 80. Paper by Miller, Taylor et al, Archives of Diseases in Childhood 2003 81. Paper by Taylor et al, Archives of Diseases in Childhood, 2003 82. Article by Verstraeten et al, Pediatrics, Nov 2003 83. Paper by Stehr-Green et al, American J of Preventative Medicine 2003 84. Paper by DeStefano, Yeargin-Allsopp, Boyle et al, Pediatrics, January 2004 85. Paper by Williams et al, Aberdeen University, Neuroimage June 2004
Part H: Reviews Concluding There Is No Evidence Of A Vaccine/Autism Link
86. Medical Research Council Ad-Hoc Review, March 1998 87. Presentation by Miller to UK All Party Parl. Group on Primary Health Care, 2000 88. Medical Research Council Sub-Committee Report, March 2000 89. Review by US Institute of Medicine, 2001 90. Review by Strauss and Bigham, Health Canada/Un. Of British Columbia, 2001 91. Elliman, Bedford and Miller Review, Arch. of Diseases in Childhood, Oct. 2001 92. Medical Research Council Review, July-December 2001 93. Further Review by US Institute of Medicine, February 2002 94. Review of the Scottish Executive MMR Expert Group, April 2002 95. Review by Wilson, Mills et al, Arch. of Pediatric & Adolescent Med., July 2003 96. Review by US Institute of Medicine, Washington, February 2004
Part J: The MMR Original Safety Trials Debate
97. Wakefield & Montgomery “Through A Glass Darkly” MMR safety-studies pa per 98. Dr. Peter Fletcher Commentary, Journal of Adverse Drug Reactions, 2001 99. Dr. Stephen Dealler Commentary, Journal of Adverse Drug Reactions, 2001 100. Dr. F. Edward Yazbak Commentary, Journal of Adverse Drug Reaction, 2001 101. The Wakefield/Watson/Shattock Rebuttals 102. The UK Department of Health’s Repudiation of “Through A Glass Darkly”.
Part K: Studies That Point Towards The Plausibility Of Gut/Autism, MMR/Gut/Autism, Thimerosal/Autism and Autoimmunity/Autism Links
103. Paper by Nelson & Gottshall, Applied Microbiology, May 1967 104. Paper by Eggers, Klinical Paediatrics, March 1976 105 Weizman, Weizmann, Szekely et al Study, Am. Journal of Psychiatry, Nov. 1982 106. Delgiudice-Asch and Hollander Study 107. Paper by Dr. H. Fudenberg 108. Paper by Dr. Reed Warren 109. Warren and Singh Study, Immunogenetics, 1992 110. Singh, Warren, Odell, Warren and Cole Paper, March 1993 111. Singh, Warren, Odell et al Study, Brain Behaviour, March 1993 112. Oleske and Zecca paper 113. Binstock paper 114. Anne-Marie Plesner Letter, Lancet, February 1995 115. Paper by Thompson, Montgomery, Pounder & Wakefield, Lancet, April 1995 116. Gupta, Aggarwal and Heads Study, Journal of Autism and Dev. Disorders, 1996 117. Montinari, Favoino and Roberto paper, Naples conference May 1996 118. Auwaerter and Griffin paper, Clin Immunology and Immunopath., May 1996 119. Cook, Courchesne et al Paper, Molecular Psychiatry, May 1996 120. Griffin and Hussy Study, Journal of Infectious Diseases, June 1996 121. Martinez et al Study, Proceedings of National Academy of Sciences, 1997 122. Paper by Zecca, Graffino et al, Meeting of National Inst. of Health, Sept. 1997 123. Weibel, Caserta and Evans Study, March 1998 124. Wakefield et al “Early Report”, Lancet, February 1998 125. Paper by Montgomery, Morris et al (publication date/details not yet known) 126. Sabra, Bellanti and Colon letter, Lancet, July 1998 127. Further Paper by Singh and Yang, Pharmaceutical Journal, October 1998 128. Uhlmann, Sheils et al Paper 129. Bitnun et al Study, Clinical Infectious Diseases Journal, October 1999 130. Paper by Horvath, Papadimitriou et al, Journal of Pediatrics Nov 1999 131. Paper by Dr. Singh to the US Committee on Government Reform, April 2000 132. O’Leary Paper Presented to US Congressional Oversight Committee, April 2000 133. Kawashima, Takayuki et al Study, Digestive Diseases and Sciences, April 2000 134. Confidential Review by Centers for Disease Control, Simpsonwood, June 2000 135. Hagenbuch, Kullak-Ublick et al Study, Journal of Pharm. Exp. Ther., July 2000 136. Wakefield et al Paper, American Journal of Gastroenterology, September 2000 137. Statement by Professor Walter O. Spitzer, December 2000 138. Furlano, Anthony et al Study, Journal of Pediatrics, 2001 139. Study by Jyonouchi, Sun and Le, J. Allergy & Clinical Immunology, Feb. 2001 140. Study by Jyonouchi, Sun and Le, J of Neuroimmunology, 2001 141. Paper by Spitzer, Aitken et al, Journal of Adverse Drug Reactions & Tox., 2001 142. Paper by Dr. Ken Aitken to the Scottish Society for Autism, 2001 143. Paper by Imani and Kehoe, Clinical Immunology, September 2001 144. Paper by Dr. Timothy Buie, Oasis 2001 Conference for Autism, Portland, US 145. Paper by Uhlmann, Wakefield, O’Leary et al, J. of Clinical Pathology, Feb. 2002 146. Paper by Singh and Nelson, February 2002 147. Review by Wakefield, Pulestone, Montgomery et al, Aliment Pharm. Ther. 2002 148. Report of Study by Comi et al, Johns Hopkins Hospital, Baltimore, April 2002 149. Paper by Torrente, Ashwood, Day et al, Lancet, May 2002. 150. Paper to 102nd GM of American Soc for Microbiology by Singh et al, May 2002 151. Study by O’Leary et al, to be presented to Path Soc of GB and Ireland July 2002 152. Wakefield Paper Presented to US Government Reform Committee, June 2002 153. Paper to US Government Reform Committee by Dr Krigsman, June 2002 154. Unpublished Research by Dr Paul Shattock, University of Sunderland, June 2002 155. Paper by Sheils, Smyth, Martin & O’Leary, Trinity College Dublin, 2002 156. Paper by Dr. Vijendra Singh, Utah State University, August 2002 157. Paper by Finegold, Molitoris, Song, J. Of Clinical Infectious Diseases, Sept 2002 158. Further paper by Jyonouchi, Sun & Itokazu, University of Minnesota, Oct 2002 159. Paper, Treatment of Late Onset Autism, Matarazzo, Univ. of Sao Paulo, Nov 2002 160. Paper by Makani, Gollapudi et al, Genes & Immunity, 2002 161. Paper by Westphal, Asgari et al, Arch of Toxicology, August 2002 162. Unpublished letter by Dr. Wakefield to the New Eng. J. of Medicine, Nov 2002 163. Study by Croonenberghs et al, University of Antwerp, December 2002 164. Paper by Singh and Jensen, Pediatric Neurology 2003 165. Paper by Geier and Geier, Society for Experimental Biology & Medicine 2003 166. Study by Geier and Geier, International Pediatrics, May 2003 167. Further Paper by Geier and Geier, Pediatric Rehabilitation, Apr-June 2003 168. Further Paper by Geier and Geier, Journal of Am Phys and Surg, Spring 2003 169. Paper by Bradstreet, Geier, Kartzinel et al, J of Am Phy and Surg Summer 2003 170. Letter by Geier and Geier, J of Am Physicians and Surgeons, Summer 2003 171. Paper by Via, Nguyen et al, Environmental Health Perspectives August 2003 172. Paper by Sweeten, Bowyer et al, Pediatrics, November 2003 173. Paper by Ashwood, Murch et al, J of Clinical Immunology, November 2003 174. Study by Ueha-Ashibishi, Oyama et al, Toxicology, Jan 2004 175. Paper by Singh, presented to the Institute of Medicine, Washington, Feb 2004 176. Paper by Bradstreet presented to the Inst of Medicine, Washington, Feb 2004 177. Paper by Bradstreet, O’Leary, Sheils et al to the Inst of Medicine, Feb 2004 178. Further Paper by Bradstreet, presented to the Institute of Medicine, Feb 2004 179. Presentation by Geier and Geier to the Institute of Medicine, Feb 2004 180. Paper by De Water, Ashwood et al, MIND Institute, U of Calif at Davis May 2004 181. Paper by Hornig, Chian, Lipkin et al, Molecular Psychiatry June 2004 182. Study by Waly, Olteanu, Deth et al, J of Molecular Psychiatry April 2004 183. Paper by Torrente, Anthony et al, American J of Gastroenterology, April 2004 184. Presentation b Prof. Boyd Haley, Canada Autism Conference, April 2004 185. Paper by Bradstreet, Dahr, Anthony et al, J of Am Phy & Surg Summer 2004
Part L: Other Relevant Papers
186. US Developmental Delay Registry Report, 1994 187. Stratton et al Study, National Academy Press, 1994 188. Paper by Carbone. 189. Iizuka, Saito et al Study, Gut, May 2001 (Mumps Study) 190. Statement by Spitzer, US House of Repres. Govt Reform Committee, April 2001 191. Statement by Dr. Jefferson, Cochrane Collaboration, Oxford, October 2002 192. Paper by Sweeten et al, Pediatrics 2003 193. Paper by Blaycock, JANA, Winter 2003 194. Paper by Singh and Rivas, Jan 2004
Part M: Future Papers Investigating A Link/Increased Prevalence
195. Fombonne et al Study, London 196. Charman et al Study, London 197. Study by Professor Andrew Hall, London 198. Study by Takahashi et al, Tokyo 199. Study by Rall, Fox Chase Cancer Center, US 200. Studies Commissioned by the US Center for Disease Control 201 UK National Institute for Biological Standards and Control Study 202. Study by University of California at Davis into Environmental Factors 203. Study by Afzal et al, February 2003 204 . Other UK Studies funded by the Medical Research Council 205. Study by Autism Center, University of Medicine & Dentistry, New Jersey, US 206. Study by Center for Disease Control, New Jersey, US 207. Study by Robert Wood Johnson Medical School, New Brunswick, US 208. Survey by New Jersey Answers for Autism 209. Columbia University (Lipkin et al) Autism Birth Cohort Study
Part N: Flawed UK Regulatory and Monitoring Systems
210. Fighting Measles, Missing Autism, Overlooking Damage? 211. Has the UK Medicines Control Agency Missed the Syndrome? 212. Further Statement by Dr. Thomas Jefferson, Cochrane Collaboration, Mar 2004 213. Has The UK Committee on Safety of Medicines Modified The MMR Vaccine? 214. UK Department of Health Re-Launch of MMR, January 2001 215. The Search For Alternatives To MMR
Part P: UK and US Political Initiatives
216. UK House of Commons Health Committee, Westminster 217 UK All Party Parliamentary Group on Autism, Westminster 218. Scottish Parliament, Edinburgh 219. UK Liberal Democrats 220. UK Conservatives 221. US House of Representatives Government Reform Committee
Part Q: Litigation
222. UK Legal Action 223. UK Vaccine Damage Payment Scheme 224. US Vaccine Injury Compensation Scheme (VICP) 225. Families Taking Legal Action in the US over Thimerosal and Autism 226. US Government Attempts To Block The Thimerosal/Autism Litigation 227. MMR Litigation In Ireland 228. MMR Litigation in Japan 229. Litigation Elsewhere
Part R: Some Conclusions and Some Unanswered Questions
230. Some Broad Conclusions 231. Some Unanswered Questions
EXECUTIVE SUMMARY
? This note - which has been put together by the parent of a child who became autistic after immunisation - sets out the concerns of parents whose children have degenerated into an acquired-autistic state after MMR or other vaccines, and attempts to summarize the debate over thimerosal (or thiomersal) preservative used in vaccines other than MMR, and to highlight possible links between this mercury-based preservative and autism. It is possible that the MMR and thimerosal factors overlap in the cause of late-onset degenerative autism.
? These are immense and complex subjects. This briefing does not attempt to cover every single piece of the available scientific literature for or against an MMR/autism or thimerosal/autism link, but it reviews about one hundred of the most recent, most pivotal, or most frequently-quoted studies and papers.
? Its key finding is that there has not been a single credible study that can robustly refute the claims of the parents that their children’s acquired autism has been caused by MMR or related vaccines. Each of the studies that seeks to “disprove” an MMR/autism link can be argued to be flawed in design or ambiguous in results. These flaws are discussed in detail in the text.
? It also notes that all but one of the studies that seek to disprove an MMR/autism or a thimerosal/autism link did not look at the actual children themselves, but rather were based upon statistical analyses of the medical records of the wider population. Such epidemiological studies are not appropriate to the identification of relatively-rare adverse outcomes.
? Such studies also fail to address the problem - what was it that damaged the specific children that became autistic after MMR or thimerosal-containing vaccines?
? The one MMR study that has both claimed there is no MMR/autism link and also actually looked at information extracted from the medical records of a sub-set of UK damaged children was unable to prove or refute the suggested association with MMR on the basis of the information available - although it went on, despite this, to insist that MMR was safe. And - note - this was still not a clinical study. No children were actually examined.
? Parents who have scrutinised the studies quoted by the Department of Health as “proof” of there being no link between MMR or thiomersal and autism have found that such studies crumble away easily when pressed. To give just one example, the Finnish study by Patja, Peltola et al was very loudly heralded at the start of 2001 by the UK Department of Health as convincing and conclusive proof that MMR was safe. After intense critical scrutiny by parents and media, by the end of 2001 the Medical Research Council was forced to admit that Patja, Peltola et al’s original 1998 paper “did not examine the relationship of MMR and autistic spectrum disorders.....and does not therefore provide useful evidence on this point.” Of the subsequent paper by Patja, Peltola et al, the MRC admitted: “The findings need to be interpreted with some caution, as cases of autistic spectrum disorder or bowel disorders not considered at the time attributable to MMR would not necessarily have been reported”. Quite a retreat. Yet the study still continues to be regularly quoted by medical commentators and professionals as “proof” that MMR is safe.
? In contrast, the parents find that there is a considerable, and growing, number of studies that suggest that MMR and/or thimerosal preservative (routinely used in very many vaccines until very recently, and still in widespread use in 2004) could be causing acquired autism (or “autistic enterocolitis”) in significant numbers of children.
? Contrary to the claims of the authorities, particularly in the UK, not all of these studies originate from only one group of researchers (the former Wakefield team at the Royal Free Hospital London, and then Dr. Wakefield since his departure), as has sometimes been asserted by those who defend MMR. The studies that point to a link have involved a growing number of research teams, in several countries. Other studies, whilst not specifically targeting MMR or thimerosal-containing vaccines, offer further clues as to what may be happening, and are consistent with an MMR and/or thimerosal involvement.
? Furthermore, many of the studies that suggest that there is an MMR/autism or a thimerosal/autism link are based upon the scientific analysis of data gathered from detailed individual medical examination, and upon medical samples taken from the children concerned. These are the studies that actually seek to address the two key questions, “what is the damage sustained by this specific child, and what exactly precipitated the damage to this specific child?”.
? A “house of cards” has thus been constructed by the UK Department of Health, the US Government health system and by other authorities and commentators in the medical establishment over the past five years, with repeated assurances being given to the public, but with these being based upon a lop-sided, highly partisan and culpably selective gathering and interpretation of the available evidence.
? This briefing note also finds that there are other related concerns - from the regulatory bodies themselves - about the risk of permanent developmental damage from thimerosal-containing (or thiomersal-containing) vaccines, though it is not yet completely understood as to how these problems are directly interlinked biologically to the MMR/autism problems (we are told that MMR in itself does not contain thimerosal). Class-action lawsuits are now under way in the US (see later sections) over thimerosal/thiomersal and autism, just as they have been (or still are) in the UK and Ireland over MMR and autism.
? Although complete and precise scientific proof of how the children have been damaged by vaccines and become autistic is still emerging, there have been numerous vital clues over the past six years and more - clues that all too often have been ignored, or, worse still, have been rejected out of hand by the authorities.
? The medical establishment has repeatedly asked itself the wrong question. It has asked itself “Is MMR safe?”, and “is thimerosal safe?”, hoping for an affirmative answer. In contrast, researchers and parents have asked two very different questions: “What precisely is wrong with this child?”, and “Why did this child change from being healthy to being autistic?”. It is answering these latter two questions that should be the key issue.
? The safety trials of MMR were undoubtedly very poor. That is an established fact. For the thimerosal issue, the picture is even more stark. The product appears to have had no proper safety trials since its introduction about 75 years ago, and its use appears to have lacked any appropriate back-checks on safety.
? The children that have been damaged have had their lives ruined. They were previously completely healthy. They now have seventy or eighty years of mental handicap ahead. Whether their sacrifice is justified in the interests of wider public health is not the point at issue. What is at issue is, what changed for these children, through what processes, involving what susceptibility factors and trigger factors. And how can further cases of damage be headed-off?
? This briefing note also poses a number of unanswered questions about MMR, about thimerosal, and about the children that are believed to have been severely damaged by vaccine administration. The damage involved is not confined to regressive autism.
? Finally, it is emphasized that this note is the result of a search of the published (and sometimes unpublished) studies and other information. It does not offer medical advice. Parents considering vaccinating their children with MMR or with thimerosal-containing vaccines must form their own conclusions as to whether to proceed, and are urged to gather the maximum amount of hard information before making their own choice. It is hoped that this Briefing Note offers a useful start, and is useful for journalists.
PART A
A NOVEL SYNDROME
1: What Is Acquired Autism/Autistic Enterocolitis?
? Autism is not an illness in itself, so much as a manifestation of a dysfunction in certain parts of the central nervous system, particularly affecting language, cognitive and intellectual development and the ability to relate to others. It is an effect, and a consequence, not a cause in itself. Everything has a cause. Autism is not some mysterious illness that comes out of the sky, to strike children at random. It is a global term, all too loose, to describe a set of characteristics.
? The “classic” form of autism was first described by Dr. Leo Kanner. These children were different from normally-developing children from birth.
? However, a very different form of autism, formerly a minority variant, has now begun to predominate. In this, children develop normally, passing all their developmental milestones, and then later acquire an autistic-like condition. They lose their previously-demonstrated speech, learned behaviour and social skills. In effect, they dissolve into a state of mental impairment, of varying severity. Often the damage is severe or very severe, and usually the damage appears to be permanent, although some remedial treatments are claimed to be able to reverse some aspects of damage to a modest degree.
? This late onset of autism typically follows the receipt of MMR vaccination, but also appears to sometimes follow measles-containing vaccines such as monovalent (so-called “single”) vaccine, or measles-rubella (MR) vaccine, and sometimes other vaccines such as DPT (diptheria-pertussis-tetanus).
? It does not necessarily occur immediately after MMR - onset of autism is not in any case an “acute” reaction - and there are now grounds for believing that onset following vaccination may be very gradual indeed, spread over at least many weeks, more probably several or many months, or even in some cases several years. The rate of deterioration seems to vary considerably. It has been a consistent error of the medical authorities to view autism as an alleged acute, immediate, reaction, although many parents have certainly reported than some form of immediate or near-immediate (within 24 hours) adverse reactions, such as high-pitched screaming and high temperatures, have occurred. Some parents have reported a rapid change in their child’s behaviour, whereas others have seen a slower decline. Typically, the child’s mood has changed, they have become quiet and withdrawn, speech has been lost and skills have vanished. Sleep patterns have often disintegrated.
? Crucially, the onset of this acquired form of regressive autism is accompanied by other visible and associated physical manifestations of problems. These include bright red ears and dark rings under the eyes after certain foods, acute gluten and casein intolerances, prolonged hyperactivity, night sweating and loss of temperature control, and chronically poor sleep patterns.
? The arrival of these problems and the degeneration of the child into autism as a “package” strongly suggests that they are interconnected
? The timing of onset following vaccination - not just MMR - is described by the UK Department of Health as a coincidence. Their argument is that autism is “noticed” around this time, because this is a time when child development is most rapid, and therefore any failure most noticeable. The thinking behind this stance appears to be that either autism was always there, all along, or that it is akin to some sort of delayed-action genetic “bomb”, primed in certain individuals to detonate just after receipt of MMR or thimerosal-containing vaccines, or around that time.
? The gross implausibility of this argument, that it is highly unlikely in the extreme that previous problems would have been missed, and at a time where children receive constant devoted attention and close scrutiny regarding their development, is ignored. The concept that genetics alone could be responsible for sudden devastating decline in a developing infant is equally implausible.
? Photographic and video evidence, together with child health and developmental records and the accounts of relatives, friends and visitors, that contradicts the authorities’ arguments, is also routinely ignored, without even a superficial investigation to verify their accuracy.
? However, very significantly, much older children have also degenerated into autism after MMR or other vaccination. If degeneration in affected children always follows immunisation with MMR or measles-containing vaccine, regardless of the age of the child, then it implies that the link is not coincidental.
? Also, no cases are known, at least to campaigning parents, of any children who have rapidly become autistic just before MMR or thimerosal-containing vaccines. This clearly implies that such cases are much fewer in number.
? Also, it is not simply a failure to develop. The children have developed normally, then inexplicably acquired their autistic state. This protracted event has been directly observed by parents and relatives, and in many cases recorded on photographs and video footage.
? There is also the issue of double-regression, where children have been normal, have been vaccinated, have regressed, have made some remedial progress, have been re-vaccinated (as a booster) and have severely regressed again. This principle is known as challenge-rechallenge. The US Institute of Medicine has stated that evidence of challenge-rechallenge would constitute powerful support for a causal link between vaccines and regressive autism. There are many UK children (and presumably US children, too) who offer such evidence, but the IoM has not yet accepted that its self-declared criteria has been fulfilled.
? No credible alternative explanation for why a previously-healthy child should become severely autistic has been put forward. The unheralded acquisition of a state of severe disability, in a substantial number of hitherto-healthy children, has to have a significant causal trigger. A growing number of scientists, as well as parents, believe that the trigger is either MMR, or thimerosal, or both acting in synergy.
? Undoubtedly there are other factors involved, pointing to a predisposition of certain children to be vulnerable to damage, of varying severity. Research should be trying to pinpoint those factors, but patently is not. Research is being held up by the refusal of the medical establishment in the UK and US to recognise the problem, or even to recognise the reality of a steep increase in autism.
? Also coinciding with the late onset of autism in many of the children (or other severe damage - autism is not the only manifestation of there being a problem), has come gastrointestinal problems such as alternating bouts of diarrhoea and constipation, chronic abdominal pains and bloating.
? Examination of children, initially but not exclusively at the Royal Free Hospital, London, has identified a novel form of inflammatory bowel disease, ileal-lymphoid nodular hyperplasia. This has emerged after ileocolonoscopy of affected children and analysis of samples. The pioneer research the Royal Free has now been confirmed by researchers at other centres in Ireland and the US.
? The simultaneous onset of these problems after a normal early development suggests that it is highly likely that these other elements are linked into the biological explanatory sequence of autism, notably through the pathway of gut damage and either the penetration of the blood-brain barrier or the triggering of some other process, such as serious myelin damage (in basic terms, the myelin sheath is the “insulation” around the neurons or “wires” of the brain).
? Research reported by Dr. Jeff Bradstreet to the US Institute of Medicine on 9th February 2004 found that, when the cerebrospinal fluid of 28 regressive-autistic children was analysed, measles virus was found in 19 of the 28 cases. When 37 non-autistic control-group children were analysed, only one child was found to have measles virus. All 65 of these children had received MMR, and none had any recorded history of wild measles infection. This more recent research is powerful statistical evidence of a measles virus complicity in the pathogenesis of regressive autism. This research therefore strongly endorses the anecdotal evidence of the parents, that their children became autistic after MMR. For many children, MMR thus remains the prime suspect.
2: The New Syndrome
This is a very brief summary of the new syndrome of autistic enterocolitis:
? In a 200-strong cohort of children examined through ileocolonoscopy at the Royal Free Hospital, London, an almost 100% incidence of ileal-lymphoid nodular hyperplasia has been found. This condition manifests itself as swollen lumps throughout the intestinal tissue of autistic children. The condition is very rare in non-autistic children.
? The condition is believed to have developed in each case in the period following MMR immunisation
? Because of the swollen and hyperplasic condition of the intestinal wall, undigested toxins , having not been stopped by either the intestine or the liver (which can also be damaged) may then be able to attack the central nervous system. The evidence for the complete pathway of damage is uncertain at present, due to lack of research.
? An alternative pathway of damage may be that the virus(es) in the vaccine, or other constituents of the vaccine, may be inflicting the actual damage, or interfering with the brain’s further development by damaging myelinisation. Comprehensive studies to determine this have also yet to be undertaken.
? It is also possible that thimerosal, a mercury-based preservative that has been routinely used in a number of vaccines, may have played a role. The resultant damage closely resembles that of mercury poisoning. Again, adequate research has not yet been done.
? Damage may in the event be via a combination of these pathways.
PART B
THE COSTS OF AUTISM
3: The Financial Costs - Autism Is Costing The Taxpayer £££££££$$$$$$$$Billions
Quite apart from the immense social costs of autism for individual families, there are the huge financial costs. Autism effects every UK and US taxpayer, not just the families with the children. In the UK, the costs comprise:
? Health costs - specialist hospital visits, GP visits, prescriptions, exclusion diet costs - passed on to the taxpayer
? Major education costs - special schools, extra teachers, extra teaching assistants, extra training, management - passed on to the taxpayer
? Transport costs for schooling and respite - taxis plus drivers and escorts, plus local authority management costs, plus environmental/congestion costs of extra traffic - passed on to the taxpayer
? Significant childhood social services costs - respite care staff costs, management, inspection, reviews - passed on to the taxpayer
? Later special transport costs in adult life (during lifelong care) - funded by the taxpayer, as the person with autism will almost certainly have no income
? The immense costs of sheltered accommodation during adult life (lifelong costs), again including social services, management, inspection, and also including furniture and other allowances, all passed on to the taxpayer
? The immense loss of earnings of the affected person (lifelong)
? The loss to the Government of their national tax revenues (lifelong)
? The loss to local government of their Council Tax revenues (lifelong)
? Loss of earnings of parents whilst acting as carers
? Loss of the parents’ tax revenues whilst caring
? Carers allowances (paid to parents when they are acting as carers), the costs of which are passed on to the taxpayer
? Disability living allowances, often at the higher rate (lifelong), including care and mobility components, passed on to the taxpayer
? Incapacity benefit (lifelong beyond age 16), passed on to the taxpayer
? Wider economic costs - other losses of gross domestic product and other non-financial contributions to the national economy
It would be interesting to know if the UK (or US) Treasury had a view on these costs, and whether sufficient resources were being devoted to investigating acquired autism and other forms of autism, as they represent a massive loss to the local and national taxpayer and the national economy. These costs will grow as more and more children become autistic and as more of the existing children reach adulthood and leave home. The affected people almost certainly won’t be paying these costs as children, nor even as adults, as they almost certainly won’t have any income. And once the children reach adulthood, the parents won’t be paying them, either.
As these costs soar, the question becomes, “is autism too important to be left to the Department of Health, a Department that has done virtually nothing to investigate its causes”? - or to its counterparts in the US and elsewhere? Is this just a private matter for the medical community, or a matter for a wider audience? And, for the medical safety regulators, “who guards the guards”? Does a Minister control his/her advisers, or do his/her advisers control the Minister?
4: Overall Cost Estimates
In June 2000 a study for the UK Mental Health Foundation found that
? the annual costs of autistic disorder in the UK were at least £1 billion
? individual lifetime costs per child affected could run to £2.94 million each.
The full costs, taking into account wider economic costs, are probably considerably higher still.
If one reduces the £2.94m per child by an arbitrary 33%, to allow for the fact that many children are less severely damaged than the maximum, and will thus cost less to care for, one is still facing a bill of £2m for lifelong care, not counting other wider costs such as loss of tax revenues from the autistic person an (when their parents care for them) their carers, plus other costs such as carers’ allowances (a UK scheme). The degree of severity and precise costings could be debated at length, but are clearly extremely large for severe cases.
Another way of looking at it is to compare the UK with the US, which has hard State-collected data. According to the Individuals With Disabilities Education Act data, the US autism numbers (with four times the population) stood at 120,000 in early 2003 (amongst 6-21 year olds in full time education).
If UK cases currently run to around a quarter of this figure, 30,000 to 35,000, then total economic costs for the UK could be immense. A reasonable estimate would be that 35,000 cases would cost the UK taxpayer somewhere between £35 billion and £100 billion spread over perhaps seven decades, or between £500m and £1.4 billion per annum. A mid-range answer probably lies in the £20 billion to £40 billion-plus range, spread over five to six decades, and even that latter figure works out at £700 million per year. And that is only for the UK.
Even if these costs are being seriously overestimated here, they are still immense. And they could represent an underestimate, especially if there is economic damage from the milder cases that are probably not included in the statistics. There is also the prospect of cases being added to the total, all the time, now. Any annual increase in cases of, say, ten per cent would lead to all these estimates having to be re-doubled a decade on.
And this is wholly irrespective of any MMR-autism or thimerosal-autism link being proved, because the children already exist, even if the cause of their illness remains disputed. The children are out there, now, and these bills are being passed to the taxpayer, now, today. The costs meter is already running, but the immense scale of the bill is partly obscured by it being spread amongst many central and local government (or Federal and State) budget headings, and amongst numerous lesser authorities.
5. Failure To Monitor Increases In UK Autism Numbers
? There has been a consistent argument on the part of the authorities, and those seeking to defend MMR, that the apparent rise in autism may be largely a matter of better recognition. This has received some backing from autism researchers. But where hard UK or US data is available, increases are far too steep, and in far too short a timescale, to be credibly ascribed to better recognition alone..
? For this to be “better recognition” or “improved diagnosis”, this would have required these children to have been missed, simultaneously, by their parents, their relatives, their doctors and their teachers in the past This is simply not credible. For example, the increase in autism 1992-99 in Wakefield, West Yorkshire, UK, local education authority was from 5 cases to 111 cases. If increased autism is down to better recognition, it would mean that, back in 1992, there really were 111 cases, but only 5 were recognised, and the remaining 106 were missed, and by all the parties - parents, doctors, health visitors, teachers - concerned. This is completely implausible.
? Undoubtedly there has been some degree of better recognition and reclassification, following introduction of ICD-10 (international classification of diseases/disorders) criteria in 1992, and DSM-IV (diagnostic statistics manual) criteria in 1995. But this will account for only a minority of the growth.
? The UK Department of Health has failed to monitor autism, and is still failing to (despite a specific 1997 recommendation of the House of Commons Health Committee to do so). Is it now afraid of what it might find? If it does decide to monitor autism, will it find that numbers are high and then claim it has always historically been so?
? UK Health Boards/Authorities are also failing to monitor autism locally. Health Boards/Authorities have little data and no consistent approach. At the health authority level, official figures vary wildly, by factor of 300-fold, i.e. 300-times (not 300%). The data is an extraordinary mess.
? In fact, most UK data is actually non-existent. In the year 2000, only 1 in 6 UK Boards/Authorities had any credible figures at all. Most used estimates from textbooks.
? The Scottish schools census now includes autism. The census commenced in 1998. The 1998 figure was around 750, but by year 2000 this had climbed steeply to about 1,250, and by 2002 it stood at approaching 2,200.
? There are other indications of the level of increases: Kaye et al paper (see later) found a sevenfold increase 1988-99 in UK. An unpublished 1999 paper by Dr. Fiona Scott, Autism Research Unit, Cambridge, indicated autism at eleven times the expected level (1 in 174) - see later.
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