Monday, 31 December 2012

Nick Davies' "Dark Heart" and the issue of relative and absolute poverty

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)

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:


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:

Also available via the APK-Papers link (See right hand column here).

Please note a PDF of this statement also available here: 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 and below. It will also be available through various other outlets in the coming weeks.


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)

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.”

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:

Here is also one email from me to the BBC re the above complaint, for clarity:

Friday, 17 February 2012

My email to Guardian corrections/clarifications re article on John Walker Smith on Monday

Dear Madam or Sir,
I refer to the article in Monday's Guardian "Doctor struck off over MMR controversy appeals against ruling":
The article at one points reads:
“The judge asked Miller whether the alleged link between MMR and the vaccine “has now been utterly disproved” in the opinion of “respectable medical opinion”.
Miller said that was “exactly” the position.
Asked whether that was also the case in relation to autism and some types of bowel disorder, Miller said: “There are still doubters and believers on that.”
MMR is a vaccine. Did the judge actually say that a link between one named vaccine and another (un-named but called 'the) vaccine has been 'utterly disproved'? And did Walker-Smith's QC say that was 'exactly' the position?
It is like saying the link between a named dog (let's call her Daisy) and another, un-named (but called 'the') dog, had been 'utterly disproved'.
Either the journalist has misquoted the judge and QC, in which case you should correct, or the judge and QC made these mistakes in court, in which case you should clarify. There may even be another explanation I have not thought of.
It makes a difference because Guardian Readers cannot know confidently what has been allegedly 'utterly disproved', or how these relate to what might have been said, by the judge and the QC, about autism and bowel disorder (as mentioned above).
There is already so much confusion and misinformation (not to mention ideology) inherent in the various discourses around the MMR vaccine. I believe it is the Guardian's duty to establish the correct quotes so as not to add to this woeful quagmire.
Please do not hesitate to contact me if you require more information/clarification.
Best wishes
Angela Kennedy

Tuesday, 10 January 2012

7 Reasons ME advocates cannot unilaterally discard the term ‘CFS’ (or ‘ME/CFS’) just yet!

The term ‘CFS’ (denoting Chronic Fatigue Syndrome) is a problem for various reasons. However, current attempts to completely separate it from ME in the medical and lay lexicon are premature, because:

1. Most important biomedical research on ME has actually used ‘CFS’ criteria. The International Consensus Criteria demonstrates this thoroughly. Clearly there are times when the term ‘CFS’ needs to be understood as synonymous with ME.

2. The World Health Organisation’s ICD-10 has CFS as synonymous with ME in the neurological chapter at G93.3. Clearly there are times when  the term ‘CFS’ IS synonymous with ME.

3. Psychiatrists and others promoting psychogenic explanations for ME benefit from the insistence that CFS is not ME per se. It allows them to (incorrectly) conflate Chronic Fatigue Syndrome with Chronic Fatigue - a perennial problem/fallacy in the research literature! With ME out of the picture as far as CFS is concerned - the conflation with CF can become more entrenched. This also allows them to conflate CFS (even though it may denote an ME patient) with neurasthenia, something psychiatrists promoting psychogenic explanations for ME have been attempting to do for years, and was prevented from doing so by the actions of advocates in the early 2000’s, when psychiatrists claimed (incorrectly) in official forums that Chronic Fatigue Syndrome was classified in the mental disorder chapter at F48 (with neurasthenia) as well as at G93.3. It should also be noted that certain psychiatrists treat ME as if it were merely a belief system by patients and/or an archaic historical diagnosis. In addition, Peter White has claimed that PACE was not studying ME or ’CFS/ME’, indicating the psychiatrists are attempting to separate ME from CFS - but for their own reasons as above.  By unilaterally insisting ME and CFS are NEVER synonymous, advocates facilitate the painting of ME out of the picture by psychiatrists - meaning patients will be given CFS diagnoses to be conflated, by doctors, with Chronic Fatigue, a different illness entity altogether.

4. The Canadian Consensus Criteria (Carruthers et al, 2003) are peer reviewed in their own right, validated in published studies (by Leonard Jason) and operationalised (used in published studies) so currently the most ‘progressive’ of the ME criteria (in a research context) to highlight the inadequacies of Fukuda, Reeves, and Oxford Criteria. To insist they must not be used, or that findings from them must be discarded because of the term ‘ME/CFS’, is cutting off the community’s nose to spite its face, in effect.

5. People with ME get given a diagnosis of ‘CFS’ by doctors, in the UK, US and elsewhere, whether they like it or not. Insisting the two are separate in the minds of the media will not stop doctors from using that diagnosis. It means people with actual ME will be treated more often as if they have CFS, as being synonymous with Chronic Fatigue! The connection in people’s minds will become more entrenched (currently advocates can point out that is a discrepancy). Patients will still not get a ME diagnosis in the National Health Service, for example, and even in the US, the evidence suggests (bar claims that patients have been able to demand an ME diagnosis there) that the vast majority of evidence suggests people get diagnosed as ‘CFS’.

6. By keeping the two together under the WHO ICD-10 rubric FOR THE TIME BEING, we ironically allow some breathing space for patients given a CFS diagnosis when they should have an ME diagnosis, while people like Carruthers etc. can progress the science (for example the discusssion and refinement of ICC ME and its relation to the CCC), and for work by Judy Mikovits etc. to continue, and for advocates (including supporters of the community) to press the point about the instabilities and confusions and problems inherent in the various CFS criteria such as Oxford, Fukuda (with the Reeves 2003 refinement), Reeves 2005, and even the use of the London criteria in PACE, as well as how research cohorts differ from clinic attendees.

7. With all the above happening, advocates will sometimes find themselves needing to use the term ‘ME/CFS’ and even ‘CFS’ to denote ME in order to make sense in their arguments. To be repressed from doing so will render many of us ‘paralysed’ or ’tongue-tied’  - unable to construct a coherent argument in our advocacy, either to each other, or to others.

It must be emphasised this is not an argument to ‘keep’ CFS synonymous with ME per se. No-one who understands the organic nature of Myalgic Encephalomyelitis wants to ‘keep’ the name Chronic Fatigue Syndrome. Many people (myself included) use the term ME on its own whenever possible. But unilateral repression of the use of the term CFS by the ME community at this time can lead it into bigger problems.

Sunday, 8 January 2012

Gerwyn's concerns about the Lipkin Study

Gerwyn - ME advocate - has written below some key concerns about the Lipkin study. I think these are very interesting points which bear consideration, so am reproducing below:

"We all know that  a  mrv is only detectable by for a short time in the blood following innoculation thereafter it is readily found by PCR in lymphoid tissue notably spleen lymph nodes tonsilluar tissue lung tissue and intestines. We also know that for complex reasons the antibody response fades and also becomes undetectable.This is typical of the behaviour of many other gammaretroviruses. They infect B cells in the lymph nodes first and then spread to other secondary lymphoid tissues. They infect a class of B cell which ultimately resides in the peritoneal cavity..They also infect recycling CD20 B cells because those cells pass through the spleen and a very low percentage of them will become infected.The trouble is that these cells quite literally burst after a few  days. Memory B cells are also a target for infection but after a short time in the blood they home in on lymphoid tissues again. The basic message is that  multiple samples at multiple time points need to be taken from an infected patient to have any sort of chance of detecting a MRV in  blood samples.The lipkin study involves  samples taken from a patient on the same day.

 We also know that the people have been"trying" to find a MRV in people with ME have set their tests to dectect a synthetic clone which does not exist in nature.Obviously they have no chance of detecting  a real MRV in infected patients.They are going to be using this method again in the Lipkin study. Lipkin knows that XMRV does not exist in nature so 75% of the researchers will be using tests which have no chance of working.This will leave Dr Mikovits and Dr Ruscetti attempting to  detect a mrv in blood samples taken from chronically tired people on the same day!!.They are both brilliant scientists but contrary to their detractors views there is no evidence that they have magical powers!!Even if  by some incredible feat of ingenuity they are able to detect some virus in some people the difference between the number of ME positives and the numbers of CONTACT controlls is certain to be obscured. Either way we lose. Excellent design for governments and corporate interests but a dire design for people with ME."

APK-Papers Yahoo site

My complaint to the Lancet regarding the PACE trial (and related correspondence) is viewable now in full on the following Yahoo group:

This includes full complaint to Charles Warlow, and recent correspondence with Richard Turner.

I keep a number of responses, letters, short articles etc. I have written on that group for public access purposes, as well as records of key email correspondence such as the complaint to the Lancet, correspondence relating to the defamation I suffered on Wikipedia, etc.

Ange's blog.

I've started this blog as a place to share stuff, basically.

Twitter is too short. Facebook is too limited in what one can put up or write.

This is NOT a place for me to pour out my inner most thoughts, my take on every little thing, though I am still likely to write small articles here and there sometimes.

People who know me will know the things I am concerned about. People who don't and find themselves interested in one or more issues will come here and hopefully find something useful.

I'm pre-moderating comments - the reason for this is likely to become clear in time.

Not much else to say really! Yet.