Saturday, January 5, 2008

Blame the Patient



Clara Valverde RN, BSc

Aquo Health Professionals Training Team

Even though CDC's Dr James Jones' article "An extended concept of altered self: chronic fatigue and post-infection syndromes" is not a scientific article (mixing, as he does so esoterically, in the same sentence, "cytokines" with "philosophical self"), it is a very important piece of warning to anyone attempting to do serious scientific work in CFS and to PWCFS (people with CFS) about the direction that agencies and other goverment bodies are taking in order to dilute this bothersome and expensive illness.

Jones' blame-the-patient rhetoric is, to the untrained reader, well camouflaged under the pretense of being "psychoneuroendocrinology" with an extensive bibliography of other metanarrative builders like himself with blame-the-patient topics such as "the neurobiology of aggression and rage: role of cytokines". No one with any serious training in psychology, philosophy or immunology will think twice about this piece of rhetoric, unless they are concerned about the fact that the author, a virologist turned self-made-psychoanalyst, works for the CDC, payed by American tax-payers.

The whole article can be easily summarized in three points:

- CFS is not a disease.

- PWCFS make themselves sick.

- PWCFS bother those around them with their irritable behaviour.

To go into more detail, Jones says that "the current CFS case definition relies on self-reported symptoms and disability and specifies no standard measures". If Dr. Jones was not so busy playing philospher and psychologist, perhaps he could use some of his time at the CDC more usefully and do what many doctors with almost no budgets are trying to do: compile immune dysfunction and active viral infections amongst PWCFS with which to write up a proper case definition.

Jones says that the research findings have not been consistent on a possible ongoing cause and effect relationship between the syndrome and immunological processes. Actually, what have not been consistent are the studies. If long-term immunological studies were done, we surely would find some very interesting and useful information. But the more important question is: why are these studies not done after so many years of knowing that CFS is mostly an immunological alteration?

Dr Jones also seems very concerned by "sickness behaviour". This and his confused yet intense preocupation with what he calls the "unconscious" (it is "subconscious", Dr Jones,- do read Jacques Lacan, please) take him to the following interesting affirmation: "Most adults can conjure up the feeling and sensations they experienced when having an influenza infection, infeccious mononucleosis, or other systemic virus infection. Since infections and immunizations begin in early childhood, it is possible that such memories (conscious and unconscious) are stired indefinetly". This pathetic attempt to summarize the workings of the subconscious does little justice to Dr Freud and to PWCFS.

Jones, also in his article, repeats several times (a sign that his subconscious wants to say something) that a person with CFS's "physical and mental inactivity may be associated with irritability and aggressive behaviour leading to isolation from others". Here philosopher Jones's logic fails somewhat as it is usually the reverse: the isolation that the PWCFS suffers lead him or her to irritability (an even more if he or she spends his or her time reading "the experts").

Seeing as Dr Jones takes the liberty to psychoanalyze PWCFS, we feel a certain liberty to analyze what he is projecting himself.

Without going into details, one can clearly see that Dr Jones is suffering from the type of chronicity and frustration shown by many doctors who went into medicine with the idea of "curing" ("caring" they leave to nurses so as not to have to involve themselves with those uncomfortable parts of the human being which deal with the patient's own experience of disease). The lineal medical symptom-diagnosis-treatment-cure paradigm is challenged deeply by CFS and this frustration is projected by many doctors onto the patients (Absbring and Navaren 2002, Ware 1999). As Arthur Kleinman wrote: "The medical profession is dangerous for chronic patients".

Dr Jones' inability to deal with suffering is projected in his reiterated statements about the impact of the PWCFS' "behaviours" on "surrounding individuals". I.e. He is fed-up with PWCFS and he needs to discredit them (Alonzo and Reynolds 1995, Goffman 1963).

If Dr Jones' is fed up with PWCFS lack of "normal positive dynamic self-constraint", why does not he dedicate his career to other diseases?

We can only guess (the same way he does with PWCFS behaviours). But we see that in emerging diseases like CFS, there is a dangerous void which can easily be filled by an abuse of medical power and to deligitimize patients (Wendell 1996).

Doctors such as Jones, think that it is their role to define patients and their behaviour and they censor the patients' right to their definition, to their own narrative (Kleinman 1988), while they spout and publish rhetorics of domination, "professionality" and coercion. And they take things which are only probable and try to pass them as definitely true (Locke 1992).

CFS is a hard disease to work with. It takes a very skilled immunologist to work with dedication all the alterations that this disease creates. It is not a disease for those who have narrow and reductionist values (Ware and Kleinman 1992). Faced with the doubts and fears which are part of working with CFS, doctors like Jim Jones hide behind a shield of invicibility and forget that it is only a shield. Their views speak beyond the scientific evidence and grant themselves the status of a new priesthood (Raymond 1982). The fact that CFS is predominatly a woman's illness is not a small matter. A woman who has been ill with CFS for years but without a diagnosis, even after she is diagnosed, is very vulnerable and this attracts doctors who need to control and blame the patient, who need this type of power for their egos (Greenhalgh 2001).

This article is a warning. When virologists and the CDC start to "philosophyze" and to "psychoanalyze" CFS, we know that they are fullfilling any goverment's dream-come-true: to dilute this expensive disease and have it disappear by the magic of rhetoric. This is so needed by European and North American countries which are in a neo-liberal frenzy of privatizing any health care services which might still be public and accessible. These goverments know that increased immune-related emergent illnesses threaten their budgets and they will welcome Dr Jones' ideas and those of the pro-psy lobby in the UK and in other countries.

Today Dr Jones of the CDC is ranting on about PWCFS behaviour and tomorrow CFS is "a psychologial illness" and PWCFS will be in CBT groups working out their "sickness behaviour", while their Th1 and Th2 get more out of balance and their EBV, CMV and HHV6 skyrocket. The shape of things to come?

Perhaps Dr Jones and others at the CDC should know that PWCFS are watching them closely. Thousands of people with CFS who are ex (or not so ex) health workers, researchers, philosophers, psychoanalysts, policy makers, etc, and are not ready to accept this kind of article and will continue to denounce the coercion and incompetence of the likes of Jones.

PWCFS are ill, day after day, with very faulty immune systems, untreated infections, outrageously low aminoacid levels and other dysfunctions which Dr Jones does not care about (or is too busy with some useful activity, on tax-payers' time, such as trying to psychoanalyze the high levels of cytokines).

Patients are now turning away from these so-called "experts" who are only interested in the next congress to show off their cooked-up numbers, and instead, patients are collaborating with doctors who humbly work with micro-immunity, antivirals, etc, in order to stop the deterioration of the PWCFS.

And it is up to us, interested health workers, respectful health workers, informed health workers, who reject the coercion and labelling patient's behaviours and up to us, PWCFS to keep uniting and denouncing rhetoric and building networks of patients and health workers for truly scientific, respectful and efficient health services for CFS.


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One thing the detractors forget is that we have a lot of patients who used to be doctors and nurses. Whereas most patients just read the plain-English conclusion of research studies, there are those who can understand every word and point out the fictions (e.g., the researchers who load patient pools with depressed people who don’t meet CFS diagnostic criteria in order to prove CFS=depression) and lapses in logic.

Thank God for these medical experts within the CFS community who debunk the detractors’ prejudices with solid medical evidence and logic.

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