- Messages
- 26
MYALGIC ENCEPHALOMYELITIS (ME), RETROVIRUSES, GAMBLING & MEDICAL TAXONOMY.
If I wasn't living in grinding poverty due to having ME and having been forced into years of self-defending campaigning, I would give lots of money to new retroviral research - it is so important - save perhaps for a few bucks reserved for indulgence on a speculative wager (if I could find a taker in the book-making fraternity). My bet would be this: that classic Myalgic Encephalomyelitis (ME) LONG pre-dates widespread patient affliction with the recently discovered retroviruses published in the journals Science/PNAS and that they are, like HIV, relatively new kids on the block (at the very least, in terms of widespread incidence in human beings) that undermine immune and other body systems and make it likely that an afflicted individual develops A WHOLE RANGE OF possible illnesses, NOT just ME.
A second part of my bet would be that the 1980s relative upsurge in the incidence of ME, neurodegenerative diseases generally and other illnesses would be largely (but not exclusively) explained by the arrival or spreading of these malevolent 'new kids on the block'. It is early days, but the sooner LARGE numbers of other, non-ME, patient groups (multiple sclerosis, lupus, etc, etc) are investigated for presence of various new retroviruses the better. I firmly believe we need to know how widespread retroviral infection is likely to be within broader patient/population groups and not just assess ME patients with healthy controls in isolation.
Moreover, it would be a travesty upon travesty if, in future, some new-fangled insurance-industry-driven patient sub-grouping test/initiative declared that genuine ME patients without proven retroviral infection are somatising mental-cases that are not worthy of medical attention or welfare support. Call me a cynic, but vested-interest is the mother of persistent perverse outcomes: to quote Professor Bruce Charlton, "In terms of the classical theory of science; bogus theories should be readily demolished by sceptical competitor(s)... However, in practice, it seems that even the most conclusive 'hatchet jobs' done on phoney theories will fail to kill, or even weaken, them when the phoney theories are backed-up with sufficient economic muscle in the form of funding."[1] A timely statement if ever there was one and whilst maybe, just maybe, the wider self-interest of society in removing pesky retroviruses from blood-transfusion banks will ultimately mean the 'all ME is somatisation, etc' assertions of the Wessely School[2] will be finally laid to rest, you can bet your bottom dollar that questionable psychiatry will broadly continue in many alternative forms.
If they are to maintain any semblance of scientific credibility however, the new retroviral findings and subsequent international moves to protect blood supplies simply MUST now have fundamental and radical revising effects upon ALL official health bodies with regard to ME: both those that have already been questionably guided/influenced by psychiatric/insurance-industry lobbying (such as those in the UK like NICE, the DWP, the MRC and Department of Health[3]) and those who are currently subject to such ongoing powerful lobbying (e.g the ICD Revision Team of the World Health Organisation examining ME/CFS medical taxonomy). The ME community clearly must use the new retroviral discoveries to the maximum medico-political effect and the Whittemore Peterson Institute deserve a medal and every penny we can pass their way in my view.
For what it's worth however, I personally think, particularly in these early days, we should be cautious when it comes to assertions over what we claim 'causes' ME - especially where such claims involve causal-exclusivity/primacy - and, for the time being at least, simply use recent retroviral findings to augment and draw attention to the large body of existing biomedical evidence that indicates ME is no somatisation disorder and that it needs proper recognition, funding and research on at least an equal footing to that given to HIV/AIDS.[4] As one of the authors of the recent PNAS MLV-related retrovirus paper[5] said way back in 2006: there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. Its not an illness that people can simply imagine that they have and its not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over.[6] Quite.
Useful overviews of such biomedical findings have been provided by Professor Malcolm Hooper, for example, and contain information which no medical practitioner treating, assessing or commenting upon ME patients should be without.[7] Questions of ME/CFS medical taxonomy and diagnostic criteria do indeed need to be readdressed, but not in the increasingly obvious unscientific way the insurance-industry-linked Wessely-School psychiatric lobby would like. A good start to such questions comes from that excellent psychologist/scientist, Leonard Jason, in his recent, must-read, peer-reviewed paper entitled 'The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic fatigue Syndrome Case Definition'.[8] It may take a long time, but one gamble I am certain will not pay off is by those who, for various reasons, thought they could effectively ignore what has been known by the enlightened for a long, long time: that ME is a serioius PHYSICAL disease. Dr Melvin Ramsay[9] WILL have his day.
Anglia ME Action.
contact@angliameaction.org.uk
[Permission to repost].
ENDNOTES:
[1] Professor Bruce Charlton Zombie Science a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018: See:
http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html
[2] Note, for example, Professor Simon Wessely's assertion that "ME is simply a belief, the belief that one has an illness called ME" amongst others in his presentation to the 9th UK Elliot Slater Memorial lecture. See:
http://www.meactionuk.org.uk/wessely_speech_120594.htm
For further evidence of Wessely School misrepresentations of ME/CFS see 'QUOTABLE QUOTES' Compiled by Margaret Williams on behalf of the UK charity 'Invest in ME', April 2007, at:
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf
[3] Note, for example the comments of the Parliamentary Group on the Scientific Research into ME (GSRME) with regard to the DWP: There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical expert in a field of high controversy requires a different methodology of benefit assessment. See page 30 of The Report of the UK Group on the Scientific Research into ME (GSRME), entitled: Inquiry into the Status of CFS/ME and Research into Causes and Treatment. November 2006. At the GSRME House of Commons Website:
www.erythos.com/gibsonenquiry/index.html
And see various professionals' High Court witness statements at:
http://www.angliameaction.org.uk/nicejr/
And see:
Magical Medicine: How to make a Disease Disappear and Ethical and Scientific Concerns about the MRC PACE Trial, both by Professor Malcolm Hooper, at:
www.meactionuk.org.uk/magical-medicine.htm
www.meactionuk.org.uk/MREC-complaint.htm
And see:
CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A MUST READ document.
www.meactionuk.org.uk/Corporate_Collusion_2.htm
And see:
Proof Positive? Evidence of the deliberate creation via social constructionism of psychosocial illness by cult indoctrination of State agencies, and the impact of this on social and welfare policy. Eileen Marshall, Margaret Williams 30th August 2005. At:
www.meactionuk.org.uk/PROOF_POSITIVE.htm
And see:
Concerns About Commercial Conflict of Interest Underlying the DWP Handbook Entry on ME/CFS. Hooper, Marshall & Williams.
www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.htm
[4] Such parity is well justified given the numbers afflicted with ME and its seriousness as indicated, for example, by Professor Nancy Klimas: "I hope you are not saying that CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV." Professor Nancy Klimas, University of Miami, reported in the New York Times, 15th October 2009.
[5] 'Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood donors'. Shyh-Ching Lo et al; PNAS, August 2010; Doi: 10.1073/pnas.1006901107. Available online at:
www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
[6] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006. See:
http://www.cdc.gov/media/transcripts/t061103.htm
[7] See Professor Hooper's peer-reviewed overview paper 'Myalgic Encephalomyelitis: a review with emphasis on key findings in biomedical research'. Professor M Hooper. J Clin Pathol 2007; 60:466471. Doi: 10.1136/jcp.2006.042408.
http://jcp.bmj.com/cgi/content/abstract/60/5/466
And for a more extensive overviw see 'ME/CFS (WHO ICD-10 G93.3) BIOMEDICAL EVIDENCE SUMMARIES', Extracts from 'Magical Medicine: How to Make a Disease Disappear...' at:
http://www.angliameaction.org.uk/docs/biomedical-evidence-summaries.pdf
[8] 'The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic fatigue Syndrome Case Definition'. Leonard Jason et al, American Journal of Biochemistry and Biotechnology 6 (2): 120-135, SN 1553-3468. Available at:
www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf
www.scipub.org/scipub/c4p.php?j_id=ajbb
[9] MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. Published 1986. See:
http://www.meactionuk.org.uk/ramsey.html
- ENDS -
If I wasn't living in grinding poverty due to having ME and having been forced into years of self-defending campaigning, I would give lots of money to new retroviral research - it is so important - save perhaps for a few bucks reserved for indulgence on a speculative wager (if I could find a taker in the book-making fraternity). My bet would be this: that classic Myalgic Encephalomyelitis (ME) LONG pre-dates widespread patient affliction with the recently discovered retroviruses published in the journals Science/PNAS and that they are, like HIV, relatively new kids on the block (at the very least, in terms of widespread incidence in human beings) that undermine immune and other body systems and make it likely that an afflicted individual develops A WHOLE RANGE OF possible illnesses, NOT just ME.
A second part of my bet would be that the 1980s relative upsurge in the incidence of ME, neurodegenerative diseases generally and other illnesses would be largely (but not exclusively) explained by the arrival or spreading of these malevolent 'new kids on the block'. It is early days, but the sooner LARGE numbers of other, non-ME, patient groups (multiple sclerosis, lupus, etc, etc) are investigated for presence of various new retroviruses the better. I firmly believe we need to know how widespread retroviral infection is likely to be within broader patient/population groups and not just assess ME patients with healthy controls in isolation.
Moreover, it would be a travesty upon travesty if, in future, some new-fangled insurance-industry-driven patient sub-grouping test/initiative declared that genuine ME patients without proven retroviral infection are somatising mental-cases that are not worthy of medical attention or welfare support. Call me a cynic, but vested-interest is the mother of persistent perverse outcomes: to quote Professor Bruce Charlton, "In terms of the classical theory of science; bogus theories should be readily demolished by sceptical competitor(s)... However, in practice, it seems that even the most conclusive 'hatchet jobs' done on phoney theories will fail to kill, or even weaken, them when the phoney theories are backed-up with sufficient economic muscle in the form of funding."[1] A timely statement if ever there was one and whilst maybe, just maybe, the wider self-interest of society in removing pesky retroviruses from blood-transfusion banks will ultimately mean the 'all ME is somatisation, etc' assertions of the Wessely School[2] will be finally laid to rest, you can bet your bottom dollar that questionable psychiatry will broadly continue in many alternative forms.
If they are to maintain any semblance of scientific credibility however, the new retroviral findings and subsequent international moves to protect blood supplies simply MUST now have fundamental and radical revising effects upon ALL official health bodies with regard to ME: both those that have already been questionably guided/influenced by psychiatric/insurance-industry lobbying (such as those in the UK like NICE, the DWP, the MRC and Department of Health[3]) and those who are currently subject to such ongoing powerful lobbying (e.g the ICD Revision Team of the World Health Organisation examining ME/CFS medical taxonomy). The ME community clearly must use the new retroviral discoveries to the maximum medico-political effect and the Whittemore Peterson Institute deserve a medal and every penny we can pass their way in my view.
For what it's worth however, I personally think, particularly in these early days, we should be cautious when it comes to assertions over what we claim 'causes' ME - especially where such claims involve causal-exclusivity/primacy - and, for the time being at least, simply use recent retroviral findings to augment and draw attention to the large body of existing biomedical evidence that indicates ME is no somatisation disorder and that it needs proper recognition, funding and research on at least an equal footing to that given to HIV/AIDS.[4] As one of the authors of the recent PNAS MLV-related retrovirus paper[5] said way back in 2006: there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. Its not an illness that people can simply imagine that they have and its not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over.[6] Quite.
Useful overviews of such biomedical findings have been provided by Professor Malcolm Hooper, for example, and contain information which no medical practitioner treating, assessing or commenting upon ME patients should be without.[7] Questions of ME/CFS medical taxonomy and diagnostic criteria do indeed need to be readdressed, but not in the increasingly obvious unscientific way the insurance-industry-linked Wessely-School psychiatric lobby would like. A good start to such questions comes from that excellent psychologist/scientist, Leonard Jason, in his recent, must-read, peer-reviewed paper entitled 'The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic fatigue Syndrome Case Definition'.[8] It may take a long time, but one gamble I am certain will not pay off is by those who, for various reasons, thought they could effectively ignore what has been known by the enlightened for a long, long time: that ME is a serioius PHYSICAL disease. Dr Melvin Ramsay[9] WILL have his day.
Anglia ME Action.
contact@angliameaction.org.uk
[Permission to repost].
ENDNOTES:
[1] Professor Bruce Charlton Zombie Science a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018: See:
http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html
[2] Note, for example, Professor Simon Wessely's assertion that "ME is simply a belief, the belief that one has an illness called ME" amongst others in his presentation to the 9th UK Elliot Slater Memorial lecture. See:
http://www.meactionuk.org.uk/wessely_speech_120594.htm
For further evidence of Wessely School misrepresentations of ME/CFS see 'QUOTABLE QUOTES' Compiled by Margaret Williams on behalf of the UK charity 'Invest in ME', April 2007, at:
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf
[3] Note, for example the comments of the Parliamentary Group on the Scientific Research into ME (GSRME) with regard to the DWP: There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical expert in a field of high controversy requires a different methodology of benefit assessment. See page 30 of The Report of the UK Group on the Scientific Research into ME (GSRME), entitled: Inquiry into the Status of CFS/ME and Research into Causes and Treatment. November 2006. At the GSRME House of Commons Website:
www.erythos.com/gibsonenquiry/index.html
And see various professionals' High Court witness statements at:
http://www.angliameaction.org.uk/nicejr/
And see:
Magical Medicine: How to make a Disease Disappear and Ethical and Scientific Concerns about the MRC PACE Trial, both by Professor Malcolm Hooper, at:
www.meactionuk.org.uk/magical-medicine.htm
www.meactionuk.org.uk/MREC-complaint.htm
And see:
CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A MUST READ document.
www.meactionuk.org.uk/Corporate_Collusion_2.htm
And see:
Proof Positive? Evidence of the deliberate creation via social constructionism of psychosocial illness by cult indoctrination of State agencies, and the impact of this on social and welfare policy. Eileen Marshall, Margaret Williams 30th August 2005. At:
www.meactionuk.org.uk/PROOF_POSITIVE.htm
And see:
Concerns About Commercial Conflict of Interest Underlying the DWP Handbook Entry on ME/CFS. Hooper, Marshall & Williams.
www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.htm
[4] Such parity is well justified given the numbers afflicted with ME and its seriousness as indicated, for example, by Professor Nancy Klimas: "I hope you are not saying that CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV." Professor Nancy Klimas, University of Miami, reported in the New York Times, 15th October 2009.
[5] 'Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood donors'. Shyh-Ching Lo et al; PNAS, August 2010; Doi: 10.1073/pnas.1006901107. Available online at:
www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
[6] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006. See:
http://www.cdc.gov/media/transcripts/t061103.htm
[7] See Professor Hooper's peer-reviewed overview paper 'Myalgic Encephalomyelitis: a review with emphasis on key findings in biomedical research'. Professor M Hooper. J Clin Pathol 2007; 60:466471. Doi: 10.1136/jcp.2006.042408.
http://jcp.bmj.com/cgi/content/abstract/60/5/466
And for a more extensive overviw see 'ME/CFS (WHO ICD-10 G93.3) BIOMEDICAL EVIDENCE SUMMARIES', Extracts from 'Magical Medicine: How to Make a Disease Disappear...' at:
http://www.angliameaction.org.uk/docs/biomedical-evidence-summaries.pdf
[8] 'The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic fatigue Syndrome Case Definition'. Leonard Jason et al, American Journal of Biochemistry and Biotechnology 6 (2): 120-135, SN 1553-3468. Available at:
www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf
www.scipub.org/scipub/c4p.php?j_id=ajbb
[9] MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. Published 1986. See:
http://www.meactionuk.org.uk/ramsey.html
- ENDS -