Welfare Reform and ME/CFS

(The word ‘parasitic’ is frequently used to describe all sorts of people and behaviour from benefit claimants to tax havens.  So it seemed appropriate to ask an expert. The interview began by asking a retired parasitologist for a definition of a parasite.  After a lot of head scratching, the parasitologist agreed for the purposes of this interview, to define a parasite as 1) an organism that lives in or on another organism (its host) and benefits by deriving nutrients at the host’s expense, or 2) a person who habitually relies on or exploits others and gives nothing in return.)

 

Interviewer:  So, you say that you think that the study of parasites should be taught in schools as a core subject. Why is that?

Parasitologist:  I would have thought that the answer was obvious but since you ask, I will spell it out.  The majority of people seem to comprise a host population, and the few, form ‘a power elite’, who could be viewed as essentially parasitic on the majority.  Like most parasites, they are a ‘hidden’ group.  There seems to be an unwritten rule that the ‘power elite’ collude with each other to maintain a silence about their connections, and to protect each other’s interests.  Hence, the majority needs a knowledge base about parasitism for self-protection.  For me, the most significant feature of Nick Davies’ Guardian expose of the phone hacking scandal was that it made overt the links between the upper echelons of the police, the media, the politicians and the interests of neoliberal capitalism.  Doubtless, this temporary exposure will be short-lived and soon forgotten.

Interviewer: Can you give me an example of how it would be protective?

Parasitologist:  In order to demonstrate the usefulness of parasitology, let me tell you about a fluke parasitic in freshwater fish. The cercariae (swimming infective stages) mimic a favourite fish food, mosquito larvae … you know the wriggly things that you can see in pools of still water.  The fluke larvae not only look like mosquito larvae, but can also exaggerate the mosquito style of movement, and are larger than most mosquito larvae.  Any fish seeing ‘super-mosquito’ would do well to stop before eating it and ask why the ‘mosquito larva’ looks so ‘super’.  Is it really a mosquito mutant destined for rapid extinction or does it have some investment in being eaten?

The majority, the human ‘host’ population, is also offered all sorts of tempting morsels that we are invited to ‘swallow’ but which will infect us to our collective detriment … the Big Society and Evidence-Based Medicine immediately spring to mind, but there are many other examples.

Interviewer:  I see what you mean about the Big Society, which seems to be nothing but a cover for privatization of public services … a money-spinner for the city and the private care providers … but I don’t understand about Evidence-Based Medicine (EBM).  Surely, you as a scientist would be in favour of treatments being researched and evidenced?

Parasitologist:  Indeed I would, if that were the purpose of EBM…. I would of course want to mention the inbuilt caveats about any scientific research.  That we do not begin to know everything and that the current theory is only good until …

Interviewer But what do you think the real purpose of EBM is then?

Parasitologist:  Oh … it is for the private health insurance companies.  EBM is a way of controlling and de-skilling doctors, which is necessary in order to limit health insurance company pay-outs for patients… or in the case of government to limit the NHS and benefits bill. Strangely we, the ‘host’ population, never question the government line that the benefits bill is too high.  Strange, because in 2003, the OECD reported that Britain’s benefits gateway was ‘one of the toughest in the world’ (1).  It is the equivalent of not questioning whether a ‘super-mosquito’ larva is really a mosquito.

Interviewer I cannot get my head around this … surely it is in everyone’s interests to integrate the science and every bit of medical expertise to create the best possible outcome for patients.  Surely, the population overwhelmingly wants to support and protect people if they are ill, or have some vulnerability?

Parasitologist:  Come now, do you really think that the Welfare Reform bills of New Labour and now the Coalition, address anything to do with medical science or the realities of living with a disability, a long-term illness or a mental health problem?  I can assure you that any such reform would bear no resemblance to the current proposals.

In fact, the introduction of EBM was only partially effective in stopping doctors diagnosing inconveniently expensive long-term disorders like ME/CFS.  From the government’s point of view, too many individuals were still qualifying for benefit support.  So, in July 2006, Uber-blairite John Hutton published a second Welfare Reform Bill.

The aim was to radically reduce levels of worklessness amongst single parents, older citizens and those on Incapacity Benefit (IB), and a target was set of an 80 per cent employment rate amongst working age adults. (1)

Pathways to Work was rolled out across the country in 2008.  Mansel Aylward’s Personal Capability Assessment (PCA) replaced the ‘All Work Test’, and the task of administrating the PCA was contracted out to the US corporation Atos Origin who use a computer system, Logical Integrated Medical Assessment (LIMA), which neatly side steps any inconvenient medical opinion.  Unsurprisingly, a computerized tick-list compiled by medically untrained staff, consistently fails to adequately assess the complexity of patient’s needs, and 50% of appeals against claims refusals are won by the claimant.

InterviewerI still do not understand. Why would all this be happening?

Parasitologist:  I think you are forgetting what you just said about the real purpose of the Big Society which is to privatize public services … well, what other reason could there be for Lansley’s health reforms or the Osborne cuts to what used to be called incapacity benefits? They are simply to facilitate a two tier health provision with anyone who can afford it opting for a US style insurance based health care provider.  EBM is a necessary pre-condition for the private health, private health commissioners, private employment insurance and private welfare service providers; and of course it is implicit in the underlying assumptions of the bio-psychosocial model of ‘illness’.  The bit that amuses me, is that there is no research evidence that evidence-based medicine is more effective … so evidence-based medical practice is not evidence based!

InterviewerThe ‘what’ model of illness?

Parasitologist:  The bio-psychosocial model.  I can see that I’m going to have to teach you some history before you will fully understand.

It all dates back to that fateful day in 1979, when Margaret Thatcher came to power. In fact, most of our present problems date back to that woman!  She swept aside the old economic order and implemented the crazy de-regulation of the markets proposed by the maverick economist Friedman (2) which ‘set the parasites free’.  Globalisation and neo-liberal capitalism have since become the ‘norm’, the unquestioned assumption of our politicians and media.  Every issue is framed as if ‘there is no alternative’…. this is the collusion of the ‘power elite’.  Unsurprisingly, the ‘host’ population, particularly the younger generation have been indoctrinated by this ‘false consciousness’ because no other views are ever considered by the mainstream purveyors of information.

The most important piece of legislation was the GATS treaty, which was set in motion by the Thatcher government, but finally signed in Uruguay, in1994, by the Major government.  This created legally binding global rules to ensure free competition between different nations.  Significantly, the US private health providers and insurers complained that there was not a level playing field because they were not able to gain access to the trillions of dollars that were spent in the different national health and welfare systems that operated across Europe and the UK… Hence, a gradual process of breaking down and breaking up of the UK’s welfare state was begun.  It was recognized that the public would not accept a fast and radical privatization of the popular NHS and public services, particularly on top of the selling off of the nationalised industries, so a stealth, hidden agenda was implemented.  The introduction of a ‘market’ into the NHS, legislation requiring councils to outsource services and so on, were all part of the ‘softening up’ process… a deliberate ‘worsening’ of the NHS and its financing, so that privatization could be justified (3).

There were hopes, in 1997, that New Labour would reverse these trends but it is now generally accepted that the ‘Third Way’ was little more than a thinly veiled front for an accommodation with Thatcherism, and a continuation with increasing privatization (4).

The ‘tasty’ morsels offered to the public by New Labour were in terms of ‘choice’… whereas the Tories vacillate between ‘the dire economic position’, the Big Society and ‘freedom to choose’…. but it is all part of the same process of ‘hiding’ the real agenda which is the opening up of public services to facilitate enormous profits for transnational companies and global management consultancies.  Furthermore, public services that will be underwritten by the UK government … privatization of profit and socialization of the risk.

Going back to New Labour and their Welfare Reforms …

InterviewerStop!  How do you know all this?

Parasitologist:  Oh lots of sources …  as you know I have kept up with the ME patient’s groups over the last 22 years and they have been a particular target group for these reforms but a good overview is Jonathan Rutherford’s Soundings article (1)  ‘New Labour, the market state, and the end of welfare’ (2007).

Interviewer The Jonathan Rutherford that is tied up with Blue Labour and James Purnell? James Purnell, the former Secretary of State for Work and Pensions, who proposed charging the unemployed and pensioners huge amounts of interest on ‘crisis’ loans, and who has recently taken up a senior post in Boston Consultancy to advise private companies in taking over public services?

Parasitologist:  Yes, I believe that is so … but as I have already said the ‘power elite’ all know each other.  They are employed by and employ each other.  Many have known each other since their Oxbridge days.  So Professor Wesseley, who is so rabidly set against there being a physiological basis to ME/CFS, is married to Claire Gerada who worked for the Department of Health but who is now Chair of Council for the Royal College of General Practitioners.  Mansel Aylward, a friend of Wesseley, was Chief Medical Officer at the DWP but is now the Director of the £1.6m UnumProvident Centre for Psychosocial and Disability Research at Cardiff University. Unum Provident (now known as Unum) were brought in by the Major government, as consultants on reducing the numbers of Incapacity Benefit claimants, but are now also a major funder of the think-tank ippr, whose current Chair is James Purnell.  Unum also fund Demos, another think tank active in producing consultative papers on welfare reforms (5). I could go on about the breadth of Unum’s influence in all these spheres but let me read you the first paragraph of Rutherford’s article (1).

In November 2001 a conference assembled at Woodstock, near Oxford. Its subject was ‘Malingering and Illness Deception’. The topic was a familiar one to the insurance industry, but it was now becoming a major political issue as New Labour committed itself to reducing the 2.6 million who were claiming Incapacity Benefit (IB). Amongst the 39 participants was Malcolm Wicks, then Parliamentary Under Secretary of State for Work, and Mansel Aylward, his Chief Medical Officer at the Department of Work and Pensions (DWP). Fraud – which amounts to less than 0.4 per cent of IB claims – was not the issue. The experts and academics present were the theorists and ideologues of welfare to work. What linked many of them together, including Aylward, was their association with the giant US income protection company UnumProvident, represented at the conference by John LoCascio. The goal was the transformation of the welfare system. The cultural meaning of illness would be redefined; growing numbers of claimants would be declared capable of work and ‘motivated’ into jobs. A new work ethic would transform IB recipients into entrepreneurs helping themselves out of poverty and into self-reliance. Five years later these goals would take a tangible form in New Labour’s 2006 Welfare Reform Bill.

 

I should also add that Rutherford is not an uncritical associate of Purnell.  In 2008, he wrote in the Guardian (6) :  ‘James Purnell’s reforms of incapacity benefit are inspired by a US company with vested interests and a murky record. Now, that’s really sick.’

InterviewerOK I get the picture … All of these people are inextricably linked socially and/or financially and sit on each other’s committees advising each other… and also with the overarching influence of UnumProvident (who I’ve never heard of?).  Where does the Biopsychosocial model fit in?

Parasitologist:  Well done for remembering that mouthful.  This is the aspect that gets a bit creepy … George Orwell was prescient in so many ways. … ‘The cultural meaning of illness would be redefined’ could be straight out of ‘Animal Farm’.

In the early 1990’s, the ‘problem’ for private income protection schemes such as those of UnumProvident’s, was the growth in doctor’s diagnosing long-term illnesses with no clear biological markers or ‘cures’ … Fibromyalgia, Myalgic Encephalomyelitis (ME), Chronic Pain, Lyme Disease and so on.

Unum’s 1995 ‘Chronic Fatigue Syndrome Management Plan’ sounded the alarm: ‘Unum stands to lose millions if we do not move quickly to address this increasing problem’  (1)

 

Fortunately, there were psychiatrists and academics on hand, happy to draw on their moral authoritarianism and neo-liberal policy prescriptions (and unmentioned links with Unum) to produce a monograph, The Scientific & Conceptual Basis of Incapacity Benefits (TSO, 2005, Waddell and Aylward) which was published by the DWP, and provides the intellectual framework for the 2006 Welfare Reform Bill (1).

… disease is the only objective, medically diagnosable pathology. Sickness is a temporary phenomenon. Illness is a behaviour – ‘all the things people say and do that express and communicate their feelings of being unwell’ (p39). The degree of illness behaviour is dependent not upon an underlying pathology but on ‘individual attitudes and beliefs’, as well as ‘the social context and culture in which it occurs’. Halligan and Wade are more explicit: ‘Personal choice plays an important part in the genesis or maintenance of illness’.

In other words, disease has concrete, physical aspects that can be demonstrated by medical tests.  Sickness is something like a cold which is self-limiting and from which you recover.  But ‘illness’ is a sort of psychological delusion mediated by the individual’s worldview and a ‘wanting to believe themselves to be ill’. Hence, the problem of being ‘ill’ is firmly located in the individual, and their beliefs and behaviour become the focus of moral judgment and action ie. scroungers, benefit cheats, malingerers, lacking in moral fibre, ‘learned helplessness’ and other such punitive terms.

InterviewerThat is terrible!  That must exclude any type of mental health problem … and what about sufferers from ME/CFS?  There are no biological markers for ME are there?

Parasitologist:  Well no there aren’t … but then there has been no MRC (Medical Research Council) research funding to find markers either.

InterviewerWhat!!!

Parasitologist:  The research that has been undertaken is all predicated on the assumption that ME/CFS is some sort of psychological somatoform disorder which adversely affects all 250k UK sufferers.  Look this is an enormous subject in its own right and I think that I have to be getting along home.  Suffice it to say that there is a huge body of international research, which indicates the physical nature of ME/CFS, but it has been ignored by all three medical Royal Colleges, NICE and the MRC to the detriment of ME/CFS sufferers for the last 20 or more years.  I remember a Harvard Professor likening severe ME/CFS to the terminal stages of heart failure … that is the scale of how shocking the situation really is, although I do detect slight chinks of doubt beginning to appear in the medical profession.

InterviewerThis is unbelievable!  Before you go … are there any more parasitological observations that would be useful?

Parasitologist:  Of course… my particular concern is that when a parasite becomes ‘too successful’ and overwhelms the ‘host’… both become extinct.  In my opinion, this is the very real danger of the present acceleration in privatization and lack of regulation.  On a more positive note, parasites are thought to have ‘fueled’ evolution, in that there is a selection pressure for the host to evolve strategies to avoid being parasitized.   In the meantime, I look forward to the day when the majority becomes sufficiently ‘immunized’ to reject neo-liberal capitalism.

(1)   http://www.lwbooks.co.uk/journals/articles/rutherford07.html

(2)  https://think-left.org/2011/07/21/red-labour-must-address-the-elephant-in-the-room/

(3) Pollock, A.M. (2004) ‘NHS plc – The privatisation of our health care’  publ. Verso, ISBN 1-84467-539-4

(4)  http://www.essex.ac.uk/ecpr/events/jointsessions/paperarchive/grenoble/ws6/barry_paterson.pdf

(5)  http://www.demos.co.uk/files/Mutual_benefit_-_web.pdf?1299256527

(6)  http://www.guardian.co.uk/commentisfree/2008/mar/17/epluribusunum

29 thoughts on “Welfare Reform and ME/CFS

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  2. Are you able to name this parasitologist or is he anonymous? Someone with all that knowledge and vision would be very useful fighting on M.E. patients’ behalf. Does he care enough to do so? Or does he think fighting against such widespread corruption is impossible as the elite all protect themselves? Is there any hope?

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    • DrDGreen The response to this article is such that a further piece seems very likely. Things are beginning to change. For example, the MRC has been calling for physiologically based research proposals, and increasingly individual GPs and consultants are making their voices heard against the peverse decisions of the benefits system and ATOS. The ME charities in spite of the various disputes have collectively created change. I believe that the situation is worse in many ways for ME sufferers in the US and Australia which is another reason to reject the privatisation which we are having imposed without mandate.

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  3. That was fantastic.

    It reminds me of the books Cleese and Skinner wrote – Life and how to survive them and Families and how to survive them. A great way to explain things.

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  4. Top post, Sue. What do you think of the ‘ME Patients Plot To Kill Wessely’ media frenzy? More or less credible than ‘Sooty Puts Paul Daniels In Hospital’ or ‘Freddie Starr Ate My Hamster’?

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  5. wisden Thanks … I think that the child who gets angry because it has been pinched under the desk is much more likely to be blamed by the teacher than the perpetrator who is playing the innocent victim… but sometimes the ‘innocent victim’ perpetrator makes the mistake of over egging their distress…. and ‘plot to kill’ comes into that category but then Wesseley has past form. I had never heard the nickname ‘creepy’ Crawley before that story broke, and that made me smile a lot.

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  6. Amazing piece which is based upon pure and unalloyed logic and historical and political knowledge.

    I am not a sufferer but interestingly I have come across a 1995 study showed variations in the spinal fluid proteins of ME patients – whilst others have a virus strain in common. Now that IS evidence. As for CfS – there are many causal factors and these need to be properly defined.

    I have a lot of time for Clare Gerada and the battle she has been fighting to preserve the NHS, but her spouse is beyond human description. Purnell is indeed a heretic.

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  7. http://www.ifaonline.co.uk/cover/news/2083156/unum-unveils-consumer-campaign

    “Unum has unveiled its marketing strategy which will include consumer focused television adverts later this year. The provider coincided the announcement, with research which revealed that workers fear the potential impact of long term sickness and highly value (IP).”

    NB “Unum has already begun its marketing initiative with a supplement and website partnership with the Guardian which will continue.”

    A clear motive, amongst others less clear, for the Guardian/Observer campaign to denigrate ME patients and activists.

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  8. http://dancingwiththesandman.blogspot.com/2011/08/professor-hoopers-extended-reply-to.html

    ‘For the Wessely School to ignore the scientific evidence that ME is a biomedical disorder is abusive of patients with the disorder; for them to advise the DWP decision-makers and to train ATOS examiners that ME is a mental disorder is abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious and significant medical disorder with reproducible multiple systemic abnormalities is abusive.’

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  11. a truly awesome article!
    Brilliantly assembled and coherent, despite the hugeness of the subject and the sheer amount of detail.
    Powerful, accurate and revelational of so much truth – this piece deserves to be widely read, and should be on the “required reading” list for new, young Labour MPs.

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  12. From Black Triangle

    A little bird has informed Black Triangle 😉 that the Financial Services Authority’s Enforcement and Financial Crimes Division is giving careful consideration to allegations that have been levelled against Unum for insider trading.

    The allegations are founded on them mounting a massive marketing campaign in the UK for their income protection products (disability insurance) while being advisors to the DWP on welfare reform.

    We are monitoring the situation with interest and will keep you informed of any further developments.
    http://blacktrianglecampaign.org/2011/10/11/fsa-investigates-unum/

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  13. Wisden. That is great news and please keep us informed. It will not be the first time that Unum have faced charges for acting unfairly or worse. I would like to hear similar action taken with regard to ATOS.

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  16. Good piece. But I would like to see included the question of why the last half century or so has seen the rise of illnesses like ME and other long-standing conditions. In my view this is at least partially due to the impact of the unhealthy economic system on our physical environment, our bodies and our psyches. I have ME myself and I’m certainly not saying it isn’t a physiological illness, but Wilkinson and Prickett in The Spirit Level showed how more unequal developed societies damage human health and wellbeing in many ways. I also read last year that a government funded survey (unsurprisingly not widely broadcast) had found that 80% of workers (ie those actually employed) in the UK were either obese nor had at least one chronic illness. Only 20% were entirely fit. In this situation it’s not surprising that the government wants to persuade us all that work is good for our health! But what isn’t being tackled is why there is this upsurge in ailments. We are being told we are becoming healthier and healthier and living increasingly long lives. Unfortunately I seriously doubt this – and the situation looks set to get much worse as climate change and the breakdown of capitalism speed up.

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