Friday, May 30, 2008

Pathway to Work ENDNOTES (2)

[22] To Quote Harvard's Professor Anthony Komaroff:

"there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over".

[Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006.] www.cdc.gov/od/oc/media/transcripts/t061103.htm

For an excellent regularly updated peer-reviewed overview paper - see: Myalgic Encephalomyelitis: a Review With Emphasis on Key Findings in Biomedical Research. Professor M Hooper. J Clin Pathol 2007; 60:466-471. Doi: 10.1136/jcp.2006.042408. http://jcp.bmj.com/cgi/content/abstract/60/5/466

For a biomedical research overview up to 2005 see: Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Malcolm Hooper, Eileen Marshall, Margaret Williams (For Gibson Inquiry): www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc

For updates on ME and related research - including downloadable pdf abstracts/comments on all published papers see: M.E. Research UK (MERUK): A Scotland based biomedical ME research/ information organization led by Dr Vance Spence, Honorary Senior Research Fellow, University of Dundee Medical School: www.meresearch.org.uk/

Also, for international research & ME issues updates see Co-Cure at: www.co-cure.org/

Seven Genomic Subtypes of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME): a detailed analysis of gene networks and clinical phenotypes. Jonathan Kerr et al. Journal of Clinical Pathology. 5 Dec 2007. Doi: 10.1136/jcp.2007.053553. http://jcp.bmj.com/cgi/content/abstract/jcp.2007.053553v1

Review: Chronic Fatigue Syndrome. L D Devanur & J R Kerr. Journal of Clinical Virology xxx (2006) xxx-xxx; JCV-1120; doi:10.1016/j.jcv.2006.08.013. www.cfids-cab.org/rc/Devanur.pdf

Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome of disease. Peckerman A, Lamanca JJ, Dahl KA, et al. Am J Med Sci. 2003; 326:55-60. www.cfids-cab.org/MESA/Peckerman.pdf

CFS: The Heart of the Matter - 2006 Dr Paul Cheney Seminar DVD www.dfwcfids.org/videos/video200609cheney_about.shtml  Overview document of Dr Cheney's DVD presentation: www.dfwcfids.org/medical/cheney/heart04.part1a.htm

CFS is Low Output Heart Failure Secondary to Mitochondrial Failure. Dr Sarah Myhill www.drmyhill.co.uk/article.cfm?id=381

Oxidative Stress Levels are Raised in Chronic Fatigue Syndrome and are Associated with Clinical Symptoms. Gwen Kennedy, Vance Spence et al. Free Radical Biology & Medicine: 39 (2005) 584-589. DOI: 10.1016/j.freeradbiomed.2005.04.020. www.cfids-cab.org/rc/Kennedy.pdf

Nitric Oxide Synthase Partial Uncoupling as a Key Switching Mechanism for the NO/ONOO- Cycle. Professor Martin Pall. Medical Hypotheses (2007) 69, 821-825. Doi: 10.1016/j.mehy.2007.01.070. www.cfids-cab.org/rc/Pall-1.pdf

Book: Explaining "Unexplained Illnesses". Prof. Martin Pall. ISBN: 978-0-7890-2389-6: www.haworthpress.com/store/PDFFiles/ForReps/Pall-Unexplained.pdf

Chronic Fatigue syndrome is Associated with Chronic Enterovirus Infection of the Stomach. John K S Chia & Andrew Y Chia. Journal of Clinical Pathology 2007, 0:1-6. DOI: 10.1136/jcp.2007.050054. http://press.psprings.co.uk/jcp/september/cp50054.pdf

Use of Valganciclovir in Patients with Elevated Antibody Titres against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue. Jose G Montoya et al. Journal of Clinical Virology; 37 Suppl. 1 (2006) S33-S38. www.cfids-cab.org/rc/Kogelnik.pdf

Chronic fatigue Syndrome: The Need for Subtypes. Professor Leonard A Jason et al. Neuropsychology Review, Vol. 15, No.1, March 2005. DOI:10.1007/s11065-005-3588-2. http://condor.depaul.edu/~ljason/

Functional neuroimaging correlates of mental fatigue induced by cognition among chronic fatigue syndrome patients and controls. Dane B. Cook, Patrick J. O'Connor, Gudrun Lange, Jason Steffener. PII: S1053-8119(07)00127-9. DOI: 10.1016/j.neuroimage.2007.02.033. Reference: YNIMG 4490. NeuroImage: 2007. www.cfids-cab.org/rc/Cook-2.pdf

And see MERUK article: Non-invasive structural and functional neuroimaging in ME/CFS at: www.meresearch.org.uk/research/projects/neuroimage.html

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

The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003. www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf

The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Byron Marshall Hyde M.D. et al. The Nightingale Research Foundation. ISBN: 0-9695662-0-4. www.nightingale.ca/index.php?target=bookoffer

Book: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Other Organ Pathologies. Dr John Richardson. Haworth Press, 2001. ISBN: 0-7890-1128-X. http://www.haworthpress.com/books/default.asp

[23] See CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. Document available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm  And also see: The Mental Health Movement: Persecution of Patients? A Consideration of the Role of Professor Simon Wessely and Other Members of the "Wessely School" in the Perception of Myalgic Encephalomyelitis (ME) in the UK. Background Briefing for the House of Commons Select Health Committee. Professor Malcolm Hooper. At: www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

[24] CFS is Low Output Heart Failure Secondary to Mitochondrial Failure. Dr Sarah Myhill www.drmyhill.co.uk/article.cfm?id=381

Oxidative Stress Levels are Raised in Chronic Fatigue Syndrome and are Associated with Clinical Symptoms. Gwen Kennedy, Vance Spence et al. Free Radical Biology & Medicine: 39 (2005) 584-589. DOI: 10.1016/j.freeradbiomed.2005.04.020. www.cfids-cab.org/rc/Kennedy.pdf

Nitric Oxide Synthase Partial Uncoupling as a Key Switching Mechanism for the NO/ONOO- Cycle. Professor Martin Pall. Medical Hypotheses (2007) 69, 821-825. Doi: 10.1016/j.mehy.2007.01.070. www.cfids-cab.org/rc/Pall-1.pdf

Book: Explaining "Unexplained Illnesses". Professor Martin Pall. ISBN: 978-0-7890-2389-6: www.haworthpress.com/store/PDFFiles/ForReps/Pall-Unexplained.pdf

CFS: The Heart of the Matter - 2006 Dr Paul Cheney Seminar DVD www.dfwcfids.org/videos/video200609cheney_about.shtml Overview document of Dr Cheney's DVD presentation: www.dfwcfids.org/medical/cheney/heart04.part1a.htm

[25] Use of Valganciclovir in Patients with Elevated Antibody Titres against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue. Jose G Montoya et al. Journal of Clinical Virology; 37 Suppl. 1 (2006) S33-S38. www.cfids-cab.org/rc/Kogelnik.pdf

Chronic Fatigue syndrome is Associated with Chronic Enterovirus Infection of the Stomach. John K S Chia & Andrew Y Chia. Journal of Clinical Pathology 2007, 0:1-6. DOI: 10.1136/jcp.2007.050054. http://press.psprings.co.uk/jcp/september/cp50054.pdf

[26] On the highly questionable behavioural approach to ME (now officially adopted by NICE and others in the UK); Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected ME Clinical Case Definition, states: "Supporters suggest that 'ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes'. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of patient's symptoms, blame them for their illness and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS."

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

And the Parliamentary Gibson Group Inquiry Report unequivocally states:

"The Group found that the international criteria paid far greater attention to the symptoms of CFS/ME while the Oxford criteria focus very little on any symptoms other than long term tiredness. There is concern that the broad spectrum of patients who may be included in these criteria may lead to inaccurate results in patient studies of CFS/ME." [Page 12 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html ].

AN ABSOLUTE MUST READ document on this matter is: Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment on Section 3 of: The diagnosis, treatment and management of chronic fatigue syndrome (CFS)/(ME) in adults and children, Work to support the NICE Guidelines... Anne-Marie Bagnall, et al, Centre for Reviews and Dissemination, University of York. 2005. Professor Malcolm Hooper & Horace Reid, January 2006. From: www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

Another MUST READ document is: Some Concerns about the National Institute for Health &Clinical Excellence (NICE) Draft Guideline issued on 29th September 2006 on Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in Adults and Children. M Williams/25% ME: www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf

And see: ADDENDUM to Some Concerns about the NICE Draft Guideline on "CFS/ME". Margaret Williams. At: www.meactionuk.org.uk/ADDENDUM_to_Response_to_NICE.htm

[27] There has been a great deal of sloppy science and downright dishonesty when it comes to categorizing and separating true ME patients (recognized as physical/neurological by the WHO at ICD-10-G.93.3) from psychiatric/idiopathic 'fatigue' patients (categorised completely separately by the WHO at ICD-10-F.48). This has led to skewed studies and outrageously misleading comment on patients' illness and disability. See for example: M.E. (Myalgic Encephalomyelitis) BASIC INFORMATION. Anglia ME Action. April 2008. At: http://www.meactionuk.org.uk/ME_BASIC_INFORMATION_-_Anglia_ME_Action_-_April _2008.htm http://www.meactionuk.org.uk/ME_BASIC_INFORMATION_-_Anglia_ME_Action_-_April _2008.pdf

Also see: What is ME? What is CFS? Information for Clinicians and Lawyers. www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

Note also that Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected ME Clinical Case Definition, states:

"Supporters suggest that 'ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes'. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of patient's symptoms, blame them for their illness and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS."

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

And the Parliamentary Gibson Group Inquiry Report unequivocally states:

"The Group found that the international criteria paid far greater attention to the symptoms of CFS/ME while the Oxford criteria focus very little on any symptoms other than long term tiredness. There is concern that the broad spectrum of patients who may be included in these criteria may lead to inaccurate results in patient studies of CFS/ME." [Page 12 of the joint Commons/Lords Gibson Parliamentary Inquiry Group (GSRME) Report into ME/CFS: www.erythos.com/gibsonenquiry/index.html ].

AN ABSOLUTE MUST READ document on this matter is: Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment on Section 3 of: The diagnosis, treatment and management of chronic fatigue syndrome (CFS)/(ME) in adults and children, Work to support the NICE Guidelines... Anne-Marie Bagnall, et al, Centre for Reviews and Dissemination, University of York. 2005. Professor Malcolm Hooper & Horace Reid, January 2006. From: www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

Another MUST READ document is: Some Concerns about the National Institute for Health &Clinical Excellence (NICE) Draft Guideline issued on 29th September 2006 on Diagnosis and Management of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis in Adults and Children. Margaret Williams / 25% ME: www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf

And see: ADDENDUM to Some Concerns about the NICE Draft Guideline on "CFS/ME". Margaret Williams. At: www.meactionuk.org.uk/ADDENDUM_to_Response_to_NICE.htm And see: See CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. Document available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm

[28] Consultant Microbiologist & ME specialist Dr Elizabeth Dowsett stated that some 10% of patients die early due to complications from ME - organ failure and other factors*. It is believed that a great number of ME-related early deaths due to end-organ failure etc are not picked up because they are simply put down to heart-failure etc per se and not properly connected with ME as the underlying cause. Moreover, it is arguable the majority of life-long ME patients have some life span reduction due to increased oxidative stress etc.

Professor Leonard Jason studied such factors and also discovered that the largest tragic joint killer was suicide: due to the appalling stress and lack of support such patients experience. Such factors can only increase under New Labour's/Unum Provident's Pathways to Work initiative. See: Professor Leonard Jason's et al paper entitled: Causes of Death Among Patients With Chronic Fatigue Syndrome. DePaul University, Chicago, Illinois, USA Health Care for Women International, 27:615-626, 2006. Routledge. Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: DOI: 10.1080/07399330600803766 www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005?crawler=true

Even more alarming was the tragic death by ME of 32 year old Sophia Mirza that was recently recorded by a UK coroner and was the result of organ failure and alleged psychiatric mistreatment/neglect. A large online archive of the papers of this case - including the death certificate - is now available at the following thanks to the courageous work of Sophia's family: The Sophia Mirza Memorial Website - Coroner's Comments/Death Certificate: http://www.sophiaandme.org.uk/index.html

Also see: Inquest Implications: www.meactionuk.org.uk/Inquest_Implications.htm

[* Dr Elizabeth (Betty) Dowsett. Addressing the Spring 2002 Annual General Meeting of ME Support Norfolk (UK). The lecture was filmed and put into the ME Support Norfolk resource library.]

[Permission to Repost].

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