The terms ‘Absolute poverty’ and ‘Relative poverty’ can be defined thus:
Absolute poverty measures the number of people living below a certain income threshold or the number of households unable to afford certain basic goods and services.
Relative poverty measures the extent to which a household's financial resources falls below an average income threshold for the economy. Although living standards and real incomes have grown because of higher employment and sustained economic growth over recent years, the gains in income and wealth have been unevenly distributed across the population.
In 1998 Nick Davies, an investigative journalist, wrote Dark Heart, an account of people’s experiences of poverty and its effects in the UK. While there has been academic work on poverty and its effects, Davies’ discussion of how people struggle is, in my opinion, one of the most relevant and explanatory (though it needs to be remembered he is writing polemically). His comments are particularly relevant to the issues of ‘absolute’ and ‘relative’ poverty, and how relative poverty does not mean ‘doing ok‘, contrary to some political representations of the term:
“… Beyond the small minority who lack even the basic necessities of life, it turns out that there are numerous people in this community who live in real need and who avoid disaster only by living in the social equivalent of an iron lung, surviving only because they allow themselves to be encased in rigid self-discipline - to control themselves and their instincts, to measure every penny and plan every action, so that they never give in to temptation by spending the evening in a pub or giving their children new toys or buying new clothes or going out to the cinema. If they control every detail of their lives and strap themselves down within strict limits, then they can cling to the four essentials of life. But these lives of quiet desperation are always on the edge of disaster. One mistake, one weakness or one extra problem: that is all it takes to plunge them into trouble. An unexpected bill, a crime, a physical sickness, a mental illness, a violent partner, an aggressive neighbour, and accident at home, a bereavement or an addiction. Some stumble over the edge accidentally, like the old lady with her phone bill. Some deliberately jump, like the ones who drink knowing that they are blowing an entire week’s money in a single night but preferring six days of trouble to a lifetime without laughter. Common sense demands that the circumstances of these people should be described as poverty. So why can’t the Duke of Edinburgh and the others see it?
Apart from the fact that that they have never entered the lives of these people, the larger obstacle is the very idea of ‘absolute poverty’. These people use the term to indicate the state of complete material deprivation in which people once lived on the streets of Victorian England and in which they continue to live on the streets of Calcutta or in the deserts of Ethiopia, conditions in which men and women have none of the essentials of life. On this definition, there is no poverty in Britain. But is that a fair way to think of poverty? What would happen, for example, if they took a similar approach to the idea of prosperity? Following the same line of argument, they would have to say that since absolute prosperity involves a state of complete material fulfilment, it can be found only in the palaces of Saudi Arabia or in the heights of Hollywood, where men and women live conditions in which they lack absolutely nothing. On that definition, they would be compelled to say that despite all that has been claimed on behalf of the British economy in the 1980s and 1990s, there is, in fact, no prosperity in Britain. The idea of poverty is being stretched by these people to a point where it loses its meaning….
… Of course, it is complicated. There are some people, including many families, who suffer from poverty yet manage to survive without collapsing. A few individuals not only survive but also manage to prosper and to escape. Others are forced to stay but nevertheless manage to hold their lives together. They have that much more inner strength, moral or physical or spiritual, than their neighbours. They have luck. They have relatives with savings who will bail them out of a bad time. But most are unable to defend themselves, perhaps because they have been weakened by one problem too many, perhaps because they are simply unlucky, and so poverty’s assault finds out some weaknesses in their armour and penetrates their lives in all its destructive force.
(Davies, 1998: 113-114)
Monday, 31 December 2012
Saturday, 29 December 2012
New years honours? This one's a head-scratcher...
I have no personal feelings about Professor Simon Wessely's character whatsoever. I must also say he is not the only person whose actions I and many others have good reason to critique. Nevertheless, the man has been dogmatically and aggressively promoting fallacious pet theories, informed by prejudicial beliefs about patients, for many years. This has led to institutionalised abuse, in various ways, of patients, and has caused huge levels of catastrophic harm to many people. In recent years he and his supporters have engaged in nothing short of a smear campaign, using his privileged access to the press, against those who make reasonable objections to his actions. To see him awarded a knighthood in these circumstances is demoralising and odd, to say the least, although it perhaps points to how such a system is often not properly scrutinised. There will be a lot of alienated UK citizens shaking their heads in dismay over this.
Monday, 19 November 2012
Statement regarding ongoing campaign by Simon Wessely claiming 'harassment' by ME/CFS sufferers
** UPDATE RE LINKS **: Due to problems with establishing publicly accessible files, the files below are now available via a public access facebook group, on a list of uploaded files: https://www.facebook.com/groups/797839010288334/files/
----------------------------------------
There has been a sustained and ongoing media campaign, for some years now, claiming ME/CFS sufferers and supporters are criminally harassing researchers.
There are key problems with these articles/radio programmes:
1. The allegations themselves are unsafe. For example, an anonymous comment that "you will all pay" was deemed a 'death threat' last summer, when no threat was actually made, and the comment appeared to denote instead a prediction of eventual accountability for mistreatment of ME/CFS sufferers. Ironically, David Cameron used the phrase "you will pay" towards rioters a few days later, without it being deemed a 'death threat'.
2. There has also been a false categorisation of legitimate, non-criminal action by ME/CFS sufferers and their supporters (such as requests under FOI legislation, official complaints through various public agencies etc.) as 'malicious harassment', or 'abuse' or 'intimidation’. Legitimate actions are cynically juxtaposed with alleged acts of criminal harassment to construct non- criminal parties as harassers.
3. These articles/programmes then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. Reasonable objectors have been falsely deemed 'extremist', even ‘criminal‘, but no chance is given to such objectors to put forward their reasonable positions.
I am a social sciences researcher and lecturer, and the parent of a person previously (but no longer) diagnosed with ME/CFS. In 2007 I was once falsely accused of 'personally harassing' Professor Wessely by a Wikipedia administrator, claiming Professor Wessely had told him this himself. I publicly oppose and critique psychogenic explanations for ME/CFS, on both a political and academic level. I have NEVER harassed Professor Wessely or contacted him, though he once wrote an unsolicited email to me, after a critical comment I made about flaws in psychogenic explanations was quoted in a parliamentary debate in 2004. When I wrote to Professor Wessely's employers, asking that he clarify he had no part in the false claims made on Wikipedia in 2007, they sadly refused to provide that clarification. Last year in the British Medical Journal, I found that people who wrote to employers were being falsely juxtaposed with alleged 'death threat' makers, as harassers.
I have written an academic book critiquing psychogenic explanations for physical illnesses. I am therefore an academic critic of Wessely's and others' claims about ME, CFS and other conditions. This is a legitimate practice, and to be falsely accused of harassment is repugnant. People are quite right in asking for substantiation of highly problematic claims, especially as these claims are being used by various parties to wage hate speech against the ME community and innocent advocates.
As I have done many times, I am more than happy to repeat that I condemn any actual harassment of researchers.
The correspondence I had with Professor Wessely's employers is reproduced here:
http://mywikibiz.com/images/7/71/Correspondence_with_Peter_McGuffin_and_John_Williams_over_Profes
sor_Wessely_and_claims_of_harassment.pdf
Also available via the APK-Papers link (See right hand column here).
Please note a PDF of this statement also available here: PDF: http://mywikibiz.com/images/2/2b/Statement_re_Simon_Wessely_and_claims_of_harassment.pdf
----------------------------------------
There has been a sustained and ongoing media campaign, for some years now, claiming ME/CFS sufferers and supporters are criminally harassing researchers.
There are key problems with these articles/radio programmes:
1. The allegations themselves are unsafe. For example, an anonymous comment that "you will all pay" was deemed a 'death threat' last summer, when no threat was actually made, and the comment appeared to denote instead a prediction of eventual accountability for mistreatment of ME/CFS sufferers. Ironically, David Cameron used the phrase "you will pay" towards rioters a few days later, without it being deemed a 'death threat'.
2. There has also been a false categorisation of legitimate, non-criminal action by ME/CFS sufferers and their supporters (such as requests under FOI legislation, official complaints through various public agencies etc.) as 'malicious harassment', or 'abuse' or 'intimidation’. Legitimate actions are cynically juxtaposed with alleged acts of criminal harassment to construct non- criminal parties as harassers.
3. These articles/programmes then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. Reasonable objectors have been falsely deemed 'extremist', even ‘criminal‘, but no chance is given to such objectors to put forward their reasonable positions.
I am a social sciences researcher and lecturer, and the parent of a person previously (but no longer) diagnosed with ME/CFS. In 2007 I was once falsely accused of 'personally harassing' Professor Wessely by a Wikipedia administrator, claiming Professor Wessely had told him this himself. I publicly oppose and critique psychogenic explanations for ME/CFS, on both a political and academic level. I have NEVER harassed Professor Wessely or contacted him, though he once wrote an unsolicited email to me, after a critical comment I made about flaws in psychogenic explanations was quoted in a parliamentary debate in 2004. When I wrote to Professor Wessely's employers, asking that he clarify he had no part in the false claims made on Wikipedia in 2007, they sadly refused to provide that clarification. Last year in the British Medical Journal, I found that people who wrote to employers were being falsely juxtaposed with alleged 'death threat' makers, as harassers.
I have written an academic book critiquing psychogenic explanations for physical illnesses. I am therefore an academic critic of Wessely's and others' claims about ME, CFS and other conditions. This is a legitimate practice, and to be falsely accused of harassment is repugnant. People are quite right in asking for substantiation of highly problematic claims, especially as these claims are being used by various parties to wage hate speech against the ME community and innocent advocates.
As I have done many times, I am more than happy to repeat that I condemn any actual harassment of researchers.
The correspondence I had with Professor Wessely's employers is reproduced here:
http://mywikibiz.com/images/7/71/Correspondence_with_Peter_McGuffin_and_John_Williams_over_Profes
sor_Wessely_and_claims_of_harassment.pdf
Also available via the APK-Papers link (See right hand column here).
Please note a PDF of this statement also available here: PDF: http://mywikibiz.com/images/2/2b/Statement_re_Simon_Wessely_and_claims_of_harassment.pdf
Thursday, 6 September 2012
My book "Authors of our Own Misfortune: The Problems with Psychogenic Explanations for Physical Illnesses' has been published
My book 'Authors of Our Own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses' has been published! It is available on Amazon.co.uk and Amazon.com below. It will also be available through various other outlets in the coming weeks.
http://www.amazon.co.uk/Authors-Our-Misfortune-Psychogenic-Explanations/dp/0857181017/ref=sr_1_fkmr1_3?s=books&ie=UTF8&qid=1346412380&sr=1-3-fkmr1
Also:
http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952
From the back cover:
"Since the advent of 'medicine' as a discrete practice, beliefs that bodily illness can somehow be caused by psychological, emotional, and behavioural ‘disorder’ have been claimed by many in the discipline. Such beliefs became less creditable as scientific methods of detecting disease developed, with discoveries such as the physiological and anatomical abnormalities in Parkinson’s disease and Multiple Sclerosis, for example, and the organisms causing syphilis and duodenal ulcers. Nevertheless, psychogenic explanations for illnesses still appear frequently within medical and academic literature, in 'common sense' public discourses, and in medical diagnoses of patients. But how plausible are these explanations?
Authors of our Own Misfortune? proposes that psychogenic explanations for physical illnesses are subject to a complex mix of confusing concepts, accompanied by certain moralistic and ideological assumptions about people and their illnesses. Most crucially, such explanations are also, almost always, fatally flawed, both scientifically and logically. Furthermore, the widespread, uncritical acceptance and use of such explanations has had serious and specific adverse effects on the people upon whom they are used.
This is a timely, groundbreaking book about a critical theme in medicine. It provides rigorous analysis of the claims made about ‘mental disorder’ and bodily illness, using current ‘medical controversies’ (such as, but not limited to, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome) to demonstrate the problems with and adverse effects of such claims. Authors of our Own Misfortune? is essential reading for academics, health professionals, and those directly or indirectly affected by psychogenic explanations for illness.
Angela Kennedy is a social sciences lecturer and researcher at a number of universities in London, and author of numerous articles, papers and books in lay, professional and academic media over a 30 year career. Her academic research interests include: the social stratification, scapegoating and social exclusion of disadvantaged groups, and the effects of these; constructions of moral panics; and the sociology of science and medicine, including manifestations of the 'science wars'. "
http://www.amazon.co.uk/Authors-Our-Misfortune-Psychogenic-Explanations/dp/0857181017/ref=sr_1_fkmr1_3?s=books&ie=UTF8&qid=1346412380&sr=1-3-fkmr1
Also:
http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952
From the back cover:
"Since the advent of 'medicine' as a discrete practice, beliefs that bodily illness can somehow be caused by psychological, emotional, and behavioural ‘disorder’ have been claimed by many in the discipline. Such beliefs became less creditable as scientific methods of detecting disease developed, with discoveries such as the physiological and anatomical abnormalities in Parkinson’s disease and Multiple Sclerosis, for example, and the organisms causing syphilis and duodenal ulcers. Nevertheless, psychogenic explanations for illnesses still appear frequently within medical and academic literature, in 'common sense' public discourses, and in medical diagnoses of patients. But how plausible are these explanations?
Authors of our Own Misfortune? proposes that psychogenic explanations for physical illnesses are subject to a complex mix of confusing concepts, accompanied by certain moralistic and ideological assumptions about people and their illnesses. Most crucially, such explanations are also, almost always, fatally flawed, both scientifically and logically. Furthermore, the widespread, uncritical acceptance and use of such explanations has had serious and specific adverse effects on the people upon whom they are used.
This is a timely, groundbreaking book about a critical theme in medicine. It provides rigorous analysis of the claims made about ‘mental disorder’ and bodily illness, using current ‘medical controversies’ (such as, but not limited to, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome) to demonstrate the problems with and adverse effects of such claims. Authors of our Own Misfortune? is essential reading for academics, health professionals, and those directly or indirectly affected by psychogenic explanations for illness.
Angela Kennedy is a social sciences lecturer and researcher at a number of universities in London, and author of numerous articles, papers and books in lay, professional and academic media over a 30 year career. Her academic research interests include: the social stratification, scapegoating and social exclusion of disadvantaged groups, and the effects of these; constructions of moral panics; and the sociology of science and medicine, including manifestations of the 'science wars'. "
Wednesday, 29 August 2012
Excellent exposition on community concerns about the Lipkin study ( by asleep on the People with ME Forum)
http://peoplewithme.com/thread-1271-post-7589.html#pid7589
28 June 2012
From asleep:
My view on the Lipkin "XMRV" study is one of strong suspicion and skepticism. I will preface this by saying that I am hopeful that he will produce a quality study that provides scientific answers and isn't swept into town in a tsunami of self-righteous political triumph. But I would be shocked if he actually does.
The main problem is that everything Lipkin has said and done to date with regard to this study is indistinguishable from astute politicking aimed at ensuring that this study seals off this line of research once and for all. I'm not saying that this is definitely the case, merely that Lipkin has yet to do anything to logically preclude this motivational possibility. Through a lens of such politics, all of his "maverick" actions are perfectly coherent:
** Carrying on with the study in defiance of criticism: The negative faux "replications" and the BWG didn't successfully put out the political fire, so another study is necessary. However, it must be carefully framed as the final word (an absolute nonsense concept in science) and conducted by someone who has delicately jockeyed themselves into a superficial position of agnosticism. Despite patients being admonished endlessly about "following scientists instead of the science," it is hoped that they will in fact follow someone down a path of corrupted science based solely on his appearance as caring and even handed.
** Getting Mikovits and Ruscetti involved: This is necessary to give the appearance of actually trying. Someone who accepts the carefully cultivated image of Lipkin's agnosticism would likely to a double-take at any attempt that entirely excludes the primary proponents. The narrative key is to have them "involved," even using their own tools and methods, but to remove crucial elements of the process from their control (in this case cohort selection; sample collection, processing, coding; overarching study design and analysis).
** Saying a number of "open minded" things about ME: Words are free and never warrant suspension of skepticism prior to actions (in this case the actual scientific quality Lipkin produces with his study). In fact, the use of hopeful words to prime the populace for destructive action is a timeless political tool, a "fig leaf."
Again, I must stress that I'm not accusing Lipkin of being motivated in this way, nor am I attacking him. I am simply pointing out a possible motivation that is entirely consistent with what has been said and done thus far. It won't be until his study is published that we will be able to evaluate the integrity of his actions and words. It is entirely in his hands to produce research that is rigorous, logical, and measured in its conclusions.
There are, however, a number of aspects to this study that would suggest this political motivation is more than a mere possibility:
** Requiring participants to pre-accept results in order to participate (i.e. gagging them): It's hard to imagine any legitimate reason why an honest study would require this. It reeks of a totalitarian attempt to control the message after publication and marks an effective continuation of gags on Mikovits.
** The very nature of the study: Why yet another "do-or-die" test under novel conditions? This is akin to demanding that because someone claims evidence of a novel phenomenon, they must immediately know enough about it to always reproduce it under any conditions presented to them. Yes, blinded and controlled reproducibility is crucial, but not at square one of understanding (unless, perhaps, your goal is to exclude additional understanding...). I think that the only honest approach to get to the bottom of things at this point is for Lipkin to sit down with Mikovits and Ruscetti and see what they are finding and then work closely with them to flesh out the many unknowns surrounding these possible viruses (e.g. better contamination controls, better understanding of viral life cycle and tropism and reservoirs, better understanding of the role of collection and processing, better understanding of methodological nuances and sequence variations). If they cannot find some agreed upon explanation such as contamination, they can at least acquire enough understanding to devise a blinded test that will reasonably control for these current unknowns, which necessarily plague this Lipkin study. Interestingly, this is the precise approach that DeFreitas recommended to the CDC, which they declined due to the cost of a plane ticket. Yet surprisingly the CDC found the funds to force upon her a series of eerily similar, premature, CDC-controlled "do-or-die" tests that "disproved" her finding.
** The secrecy of the design: Obviously the details will be known upon publication, and any criticisms levied thereafter. Obviously the study cannot begin until the design has been worked out, so why not release the details ahead of time, especially if (with a straight face) you intend it to be "definitive"? Wouldn't you want to tidy up any overlooked loose ends before starting, as it would be laughable to genuine scientists to hear of a fatally flawed study being sold as the last word? The reason for the secrecy cannot be that Lipkin is ensured of producing a flawless study and therefore it would be pointless to air the details publicly, as that would imply that the whole peer review process is unnecessary. Is the canard about "that's not the way it's done" so deeply entrenched that it cannot be put aside to make sure this all-important study is robust? Or is it just easier for criticisms to be conveniently lost in the media frenzy that will accompany a negative study?
** The possibility of this study being used to discount all retroviral involvement: In Lipkin's letter from last December, he says the study will "address the question of whether a retrovirus is associated with disease." There are already serious questions about whether this study will even adequately look for relevant MRV sequences (see below), which is a small subset of all retroviruses. The question of whether a retrovirus is involved is far far beyond the scope of this study, esp if they don't do extensive testing for reverse transcriptase, extensive searching in non-blood tissues, and extensive, unbiased deep sequencing. If the study is negative, I fully expect many "lazy" media articles to "accidentally" state that the involvement of a retrovirus has been definitively ruled out in ME.
From the perspective of patients, there is only one outcome of this study that could be devastating. That is if MRVs are involved in ME and this study renders research into this area politically infeasible and scientifically suicidal, as it would mean there will never be full understanding of or a reliable treatment for the root cause. It's far worse to seal the only path to freedom than it is to wander a bit further down a dead-end. Unfortunately, the Lipkin study seems poised to deliver this nightmare.
I think it's also worth considering some of the extraordinary implications if this study is actually positive. It would mean that Fauci (who has presided over decades of government negligence in this disease), following years of successful legal, political, media, and pseudo-scientific attacks on this finding, has inexplicably allowed his star pupil to reveal the truth just before the political finish line. It would mean unavoidable realization by the public (in an election year no less!) that not only is there a new retrovirus loose in the population, but that it has been negligently allowed to spread and destroy lives for decades by the government health agencies. It would mean catastrophic cost escalation for health insurers. It would mean that the BWG and many of the negative studies would almost have to be investigated for fraud. It would mean a fall from respectability for many of the "top" retrovirologists. It would expose the psychobabblers for what they truly are. It would mean very uncomfortable questions about viral origin and government knowledge. It would force a re-evaluation of all of the previous "rumor viruses," thus exacerbating all of these other issues. Simply put, it cannot be allowed to happen.
Lastly, I want to enumerate just some of the open questions that would have to be left on the table if this study is negative and successfully sold as "definitive":
** What about issues of cohort selection, sample collection and processing, viral life cycle and tropism adversely affecting the study? After all, the BWG failed in its duty to better elucidate these issues, so they now represent unknown variables in Lipkin's study. When you don't even know what variables you should be controlling and accounting for, your conclusions are wholly unreliable.
** What about novel sequences found by Hanson, O'Keefe, the Lithuanians, and Grossberg? None of these are close enough to VP62 to be simply written off as contamination, so leaving them unexplained (and likely un-searched-for in Lipkin's study) shows an extreme lack of scientific ingenuity.
** What about Mikovits's unsequenced isolates? It seems laughably disingenuous to claim that something is not there when you haven't even bothered to take a small step (sequence the isolates) to identify precisely what you're even searching for (the ME virus sequences). Not even Judy knows at this point exactly what sequences she found originally.
** What about Dr. Snyderman's results? If Lipkin is the maverick some claim, and the deep sequencing expert some claim, and he's serious about getting to the bottom of this disease, how could he possibly not take on such a straightforward case that others have turned down out of fear?
** What about an ARV clinical trial? Putting aside all the disingenuous "concern" from non-patient onlookers, it would be completely trivial to find very willing volunteers. Dr. Snyderman's data alone is more than was necessary to launch trials of Rituximab, a far more dangerous drug.
** What about the PC and BPH results? If the ordained ministers of Science have proclaimed that MRVs don't exist in ME, it would be rather incongruous for these studies to persist.
** What about searching for reverse transcriptase? Seems odd to say you found no sign of RVs when your search was limited to specific--but unknown--sequences and never extended to more generic markers of RV infection.
** Why has no attempt been made to test tissues? Evidence from the macaque study as well as behavior of MRV-like viruses in other animals would strongly suggest that blood is not the ideal place to look, esp until more is understood about the virus.
** What about all of the still-unexplained non-PCR results (serology, IHC, FISH)? These cannot be simply written off as contamination, and the explanations to date (cross-reactivity, etc) have not be supported by anything other than desperation and guesswork.
** Philosophically and practically, could the axioms of modern retrovirology ever permit the discovery of a slowly replicating exogenous retrovirus with some vague semblance to human or animal ERVs? I believe this is essentially the question that anciendaze has been positing for some time. In essence, the axioms and assumptions that rule the field exclude any MRV-like virus from ever being "found" in humans as any MRV-like virus would have enough similarity to endogenous sequences and be close enough to limits of detection to always be reflexively dismissed as contamination.
28 June 2012
From asleep:
My view on the Lipkin "XMRV" study is one of strong suspicion and skepticism. I will preface this by saying that I am hopeful that he will produce a quality study that provides scientific answers and isn't swept into town in a tsunami of self-righteous political triumph. But I would be shocked if he actually does.
The main problem is that everything Lipkin has said and done to date with regard to this study is indistinguishable from astute politicking aimed at ensuring that this study seals off this line of research once and for all. I'm not saying that this is definitely the case, merely that Lipkin has yet to do anything to logically preclude this motivational possibility. Through a lens of such politics, all of his "maverick" actions are perfectly coherent:
** Carrying on with the study in defiance of criticism: The negative faux "replications" and the BWG didn't successfully put out the political fire, so another study is necessary. However, it must be carefully framed as the final word (an absolute nonsense concept in science) and conducted by someone who has delicately jockeyed themselves into a superficial position of agnosticism. Despite patients being admonished endlessly about "following scientists instead of the science," it is hoped that they will in fact follow someone down a path of corrupted science based solely on his appearance as caring and even handed.
** Getting Mikovits and Ruscetti involved: This is necessary to give the appearance of actually trying. Someone who accepts the carefully cultivated image of Lipkin's agnosticism would likely to a double-take at any attempt that entirely excludes the primary proponents. The narrative key is to have them "involved," even using their own tools and methods, but to remove crucial elements of the process from their control (in this case cohort selection; sample collection, processing, coding; overarching study design and analysis).
** Saying a number of "open minded" things about ME: Words are free and never warrant suspension of skepticism prior to actions (in this case the actual scientific quality Lipkin produces with his study). In fact, the use of hopeful words to prime the populace for destructive action is a timeless political tool, a "fig leaf."
Again, I must stress that I'm not accusing Lipkin of being motivated in this way, nor am I attacking him. I am simply pointing out a possible motivation that is entirely consistent with what has been said and done thus far. It won't be until his study is published that we will be able to evaluate the integrity of his actions and words. It is entirely in his hands to produce research that is rigorous, logical, and measured in its conclusions.
There are, however, a number of aspects to this study that would suggest this political motivation is more than a mere possibility:
** Requiring participants to pre-accept results in order to participate (i.e. gagging them): It's hard to imagine any legitimate reason why an honest study would require this. It reeks of a totalitarian attempt to control the message after publication and marks an effective continuation of gags on Mikovits.
** The very nature of the study: Why yet another "do-or-die" test under novel conditions? This is akin to demanding that because someone claims evidence of a novel phenomenon, they must immediately know enough about it to always reproduce it under any conditions presented to them. Yes, blinded and controlled reproducibility is crucial, but not at square one of understanding (unless, perhaps, your goal is to exclude additional understanding...). I think that the only honest approach to get to the bottom of things at this point is for Lipkin to sit down with Mikovits and Ruscetti and see what they are finding and then work closely with them to flesh out the many unknowns surrounding these possible viruses (e.g. better contamination controls, better understanding of viral life cycle and tropism and reservoirs, better understanding of the role of collection and processing, better understanding of methodological nuances and sequence variations). If they cannot find some agreed upon explanation such as contamination, they can at least acquire enough understanding to devise a blinded test that will reasonably control for these current unknowns, which necessarily plague this Lipkin study. Interestingly, this is the precise approach that DeFreitas recommended to the CDC, which they declined due to the cost of a plane ticket. Yet surprisingly the CDC found the funds to force upon her a series of eerily similar, premature, CDC-controlled "do-or-die" tests that "disproved" her finding.
** The secrecy of the design: Obviously the details will be known upon publication, and any criticisms levied thereafter. Obviously the study cannot begin until the design has been worked out, so why not release the details ahead of time, especially if (with a straight face) you intend it to be "definitive"? Wouldn't you want to tidy up any overlooked loose ends before starting, as it would be laughable to genuine scientists to hear of a fatally flawed study being sold as the last word? The reason for the secrecy cannot be that Lipkin is ensured of producing a flawless study and therefore it would be pointless to air the details publicly, as that would imply that the whole peer review process is unnecessary. Is the canard about "that's not the way it's done" so deeply entrenched that it cannot be put aside to make sure this all-important study is robust? Or is it just easier for criticisms to be conveniently lost in the media frenzy that will accompany a negative study?
** The possibility of this study being used to discount all retroviral involvement: In Lipkin's letter from last December, he says the study will "address the question of whether a retrovirus is associated with disease." There are already serious questions about whether this study will even adequately look for relevant MRV sequences (see below), which is a small subset of all retroviruses. The question of whether a retrovirus is involved is far far beyond the scope of this study, esp if they don't do extensive testing for reverse transcriptase, extensive searching in non-blood tissues, and extensive, unbiased deep sequencing. If the study is negative, I fully expect many "lazy" media articles to "accidentally" state that the involvement of a retrovirus has been definitively ruled out in ME.
From the perspective of patients, there is only one outcome of this study that could be devastating. That is if MRVs are involved in ME and this study renders research into this area politically infeasible and scientifically suicidal, as it would mean there will never be full understanding of or a reliable treatment for the root cause. It's far worse to seal the only path to freedom than it is to wander a bit further down a dead-end. Unfortunately, the Lipkin study seems poised to deliver this nightmare.
I think it's also worth considering some of the extraordinary implications if this study is actually positive. It would mean that Fauci (who has presided over decades of government negligence in this disease), following years of successful legal, political, media, and pseudo-scientific attacks on this finding, has inexplicably allowed his star pupil to reveal the truth just before the political finish line. It would mean unavoidable realization by the public (in an election year no less!) that not only is there a new retrovirus loose in the population, but that it has been negligently allowed to spread and destroy lives for decades by the government health agencies. It would mean catastrophic cost escalation for health insurers. It would mean that the BWG and many of the negative studies would almost have to be investigated for fraud. It would mean a fall from respectability for many of the "top" retrovirologists. It would expose the psychobabblers for what they truly are. It would mean very uncomfortable questions about viral origin and government knowledge. It would force a re-evaluation of all of the previous "rumor viruses," thus exacerbating all of these other issues. Simply put, it cannot be allowed to happen.
Lastly, I want to enumerate just some of the open questions that would have to be left on the table if this study is negative and successfully sold as "definitive":
** What about issues of cohort selection, sample collection and processing, viral life cycle and tropism adversely affecting the study? After all, the BWG failed in its duty to better elucidate these issues, so they now represent unknown variables in Lipkin's study. When you don't even know what variables you should be controlling and accounting for, your conclusions are wholly unreliable.
** What about novel sequences found by Hanson, O'Keefe, the Lithuanians, and Grossberg? None of these are close enough to VP62 to be simply written off as contamination, so leaving them unexplained (and likely un-searched-for in Lipkin's study) shows an extreme lack of scientific ingenuity.
** What about Mikovits's unsequenced isolates? It seems laughably disingenuous to claim that something is not there when you haven't even bothered to take a small step (sequence the isolates) to identify precisely what you're even searching for (the ME virus sequences). Not even Judy knows at this point exactly what sequences she found originally.
** What about Dr. Snyderman's results? If Lipkin is the maverick some claim, and the deep sequencing expert some claim, and he's serious about getting to the bottom of this disease, how could he possibly not take on such a straightforward case that others have turned down out of fear?
** What about an ARV clinical trial? Putting aside all the disingenuous "concern" from non-patient onlookers, it would be completely trivial to find very willing volunteers. Dr. Snyderman's data alone is more than was necessary to launch trials of Rituximab, a far more dangerous drug.
** What about the PC and BPH results? If the ordained ministers of Science have proclaimed that MRVs don't exist in ME, it would be rather incongruous for these studies to persist.
** What about searching for reverse transcriptase? Seems odd to say you found no sign of RVs when your search was limited to specific--but unknown--sequences and never extended to more generic markers of RV infection.
** Why has no attempt been made to test tissues? Evidence from the macaque study as well as behavior of MRV-like viruses in other animals would strongly suggest that blood is not the ideal place to look, esp until more is understood about the virus.
** What about all of the still-unexplained non-PCR results (serology, IHC, FISH)? These cannot be simply written off as contamination, and the explanations to date (cross-reactivity, etc) have not be supported by anything other than desperation and guesswork.
** Philosophically and practically, could the axioms of modern retrovirology ever permit the discovery of a slowly replicating exogenous retrovirus with some vague semblance to human or animal ERVs? I believe this is essentially the question that anciendaze has been positing for some time. In essence, the axioms and assumptions that rule the field exclude any MRV-like virus from ever being "found" in humans as any MRV-like virus would have enough similarity to endogenous sequences and be close enough to limits of detection to always be reflexively dismissed as contamination.
Sunday, 25 March 2012
Email to Metropolitan Police re incident at Stratford, 22/3/12
I have just submitted this to the Metropolitan Police (see link below):
“I am using this form to 'technically' complain because I wish to make sure my concerns here are addressed and taken seriously. I have various deep concerns about the conduct of police on Thursday, 22nd March, in the incident involving the dog 'Poison' in Albert Road, Stratford, including how it has been reported by police, and information fed to the press by police, especially about the alleged 'pit-bull' status of the dog. I write as an social science academic with an interest in these issues (and the owner of a small, NON-type dog), so do not have a personal stake in the incident itself, but am expressing concern in the public interest. I am writing to request that Commander Stephen Watson, who I understand is leading a review of the case, refrain from concluding his enquiry until I have had a chance to formulate the concerns I have (and indeed, any other members of the public). I also intend to make a number of requests for information under FOI from the Metropolitan police in the next few days also. I would be grateful for an email for Commander Watson, in order to express the points I think need to be considered for this review he is undertaking. In the interests of public safety, and concern by the dog-owning community for the way police handle 'civilian' dogs, especially bull-breeds (whether or not of 'pit bull type'), the police need to be seen to be acting responsibly and learning lessons from this incident, especially about animal welfare, and especially about the welfare of bull-breed dogs. I presume the Metropolitan Police agree this is a reasonable aim, and will take steps to co-operate in order to allow people like myself to express our reasonable concerns. I am publicising this small statement, and intend to do with any further information/correspondence, in the public interest. Many thanks in advance for your co-operation.”
https://secure.met.police.uk/complaints/
“I am using this form to 'technically' complain because I wish to make sure my concerns here are addressed and taken seriously. I have various deep concerns about the conduct of police on Thursday, 22nd March, in the incident involving the dog 'Poison' in Albert Road, Stratford, including how it has been reported by police, and information fed to the press by police, especially about the alleged 'pit-bull' status of the dog. I write as an social science academic with an interest in these issues (and the owner of a small, NON-type dog), so do not have a personal stake in the incident itself, but am expressing concern in the public interest. I am writing to request that Commander Stephen Watson, who I understand is leading a review of the case, refrain from concluding his enquiry until I have had a chance to formulate the concerns I have (and indeed, any other members of the public). I also intend to make a number of requests for information under FOI from the Metropolitan police in the next few days also. I would be grateful for an email for Commander Watson, in order to express the points I think need to be considered for this review he is undertaking. In the interests of public safety, and concern by the dog-owning community for the way police handle 'civilian' dogs, especially bull-breeds (whether or not of 'pit bull type'), the police need to be seen to be acting responsibly and learning lessons from this incident, especially about animal welfare, and especially about the welfare of bull-breed dogs. I presume the Metropolitan Police agree this is a reasonable aim, and will take steps to co-operate in order to allow people like myself to express our reasonable concerns. I am publicising this small statement, and intend to do with any further information/correspondence, in the public interest. Many thanks in advance for your co-operation.”
https://secure.met.police.uk/complaints/
Wednesday, 7 March 2012
My complaint to the BBC regarding claims of 'malicious harassment' in Summer 2011
Today I received this decision from the Editorial Standards Committee (ESC) of
the BBC, who tell me the following decision of theirs is 'final'. If possible, I
intend to take it further because I do not consider this a fair and impartial
decision (especially as it is the BBC policing themselves). Nor is it an
accurate reflection of the points I made. In the meantime I am publicising the
ESC's decision here:
http://tech.groups.yahoo.com/
Here is also one email from me to the BBC re the above complaint, for clarity:
http://
the BBC, who tell me the following decision of theirs is 'final'. If possible, I
intend to take it further because I do not consider this a fair and impartial
decision (especially as it is the BBC policing themselves). Nor is it an
accurate reflection of the points I made. In the meantime I am publicising the
ESC's decision here:
http://tech.groups.yahoo.com/
Here is also one email from me to the BBC re the above complaint, for clarity:
http://
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