Where is the deception in M.E.?

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 24, 2008.

  1. tansy

    tansy New Member

    As animals living in a dangerous world, humans have to 'get it right' a lot
    of the time in order to survive. Misjudgments can lead to various dangers
    for people.

    Given this imperative it is not surprising that humans are very sensitive to
    being deceived. When people are deceived they 'get it wrong' and are put in

    When M.E. psychologizers (hereafter 'Meps') use terms like 'secondary
    gains', 'undeserving sick', people with M.E. (hereafter PWME) might feel
    they are being accused of deception. When Meps use terms like 'illness
    beliefs', 'scanning', 'hysteria', they are implying that PWME are deceiving
    themselves and are therefore (albeit unintentionally) deceiving other

    The common factor is that Meps perceive some kind of deception. Detection
    and denouncement of this perceived deception has many rewards and generates
    reasons to maintain this assertion. Meps may achieve a sense of superiority;
    the deceiver has been outsmarted. They may gain a sense of security; they
    are safe from being deceived. There is the secondary gain of gratitude from
    those they alert to the supposed deception. When people can convince others
    that a particular person or persons are deceiving them they may gain control
    of the energy generated by the inbuilt fear of being deceived, the fear of
    getting it wrong.

    The satisfaction of denouncing a deception is something that most people can
    identify with. In the children's story The Emperor's New Clothes
    (http://en.wikipedia.org/wiki/The_Emperor's_New_Clothes), I doubt that
    anyone identifies with the suckers in the crowd, they are with the child
    that sees clearly how things really are.

    The fear of getting it wrong is a phenomenon that can be exploited by
    convincing people that a deceit exists, i.e. accusing Jews in Nazi Germany
    of secret activities to undermine society or asserting that Saddam Hussein
    had control of weapons of mass destruction prior to the invasion of Iraq.

    False accusations of deception can give power to act in certain ways that
    might not otherwise be condoned and to manipulate mass-attitudes and
    behavior. Many PWME and those that know them are well aware of the abuse and
    neglect to which they have been subjected. This treatment of severely ill
    people would normally be unthinkable in a civilized society. The implication
    that PWME are self-decieved or decieving has fostered intolerance towards
    them in societies that are generally noted for their humane treatment of the

    When false accusations are disseminated and widely accepted a strange
    phenomenon can occur. When no weapons of mass destruction were found in
    Iraq neither President Bush nor Prime Minister Blair resigned nor were
    forced out of office. Both misled their countries into embarking on an
    illegal invasion but both survived the exposure of their false premise for

    Assertions about WMD's created anxiety which may have led people to accept
    their existence in the absence of evidence. In this way many people had
    unwittingly accepted a share in the falsity. This may have resulted in a
    reduced impetus to displace the misguiding leaders because some people
    protected their egos and sense of security. People were ready to grasp at
    the proffered notion that Saddam was an evil person and his regime had to go
    (despite the fact that other countries with unfit rulers have not been
    invaded). This justification which did not make the invasion legal,
    nevertheless saved people from confronting the frightening prospect that
    they had been misled by their leaders and they 'got it wrong'.

    In some circumstances it is an easy thing to say, 'I was wrong', but in
    certain situations such an admission can demand extraordinary courage and
    humility because it carries with it a profound sense of danger. The degree
    of danger is dependent on many factors which include the degree of
    ego-identity enmeshed with the mistaken belief and the level of certainty
    formerly espoused to others.

    This means that people whose egos and personas are highly associated with
    their opinions are less likely to change or modify their opinions according
    to available information. Believing their opinions are 'right' could be an
    imperative for them.

    Some people (including myself) that have remained with the same GP for many
    years may have noticed a gradual change in attitude towards a diagnosis of
    M.E. This is made possible because many GP's, although frustrated by the
    illness and sometimes by their patients, retained their open-mindedness and
    never settled on a fixed opinion. Remaining flexible has enabled them to
    accept new research findings and in some cases observe for themselves the
    process of the disease in their patients.

    Meps who voiced their opinions strongly are in a difficult position even
    though they have succeeded in disseminating their opinions into wider
    society. They cannot easily recant their opinions because of professional
    pressures. They must now strive to maintain their position as best they can
    or carefully reposition. Those that have to some degree colluded with their
    opinions may provide support and remain reluctant to refute Meps theories

    Asserting that CFS (a diagnosis that includes some PWME) is 'heterogeneous'
    offers a useful way out for Meps and those that accept their theories. CFS
    being 'heterogeneous' facilitates the possibility that some people diagnosed
    with CFS are deluding themselves and have confused everyone. This may
    create some justification for those powerful doctors that have forcefully
    espoused the view that M.E. is psychological.

    Other possible get-outs might include: rejecting Cartesian dualism;
    misdiagnosis; patients can develop new, serious illnesses; CFS is real;
    patients symptoms are real; etc. This type of wriggling and repositioning
    will probably continue whilst research adds weight to the evidence of
    physical disease in M.E.

    I imagine it is a bitter irony for many people with M.E. that those that
    implied they are deceiving themselves into thinking they are ill, must now
    struggle to maintain their own illness beliefs about M.E.

    Meps must ignore or devalue research that demonstrates physical
    abnormalities in M.E. or strive to demonstrate that such abnormalities are
    psychological in origin. Their activities may impede biophysical
    investigations and they must justify this behavior. The position held by
    some vociferous and active Meps is precarious, being wrong would not only
    undermine them professionally and in some cases financially; but also poses
    a threat to their ego identity.

    Until Meps are at least theoretically able to accept the role of deluded
    psychologizer they will never be able to consider their position honestly.
    Their activities will probably continue to add to the considerable suffering
    of PWME and impede the research that might offer real solutions. They may
    also continue to influence policy makers, the media, and the medical
    professions with their opinions.

    Attempting to analyze any type of controversy always takes me to
    considerations of what different opinions mean to me personally. If I do
    not know how I prefer one side of an argument over another the temptation
    may be to adopt those opinions that are most comfortable or profitable to
    me. Many years ago a doctor was appalled by the way fellow physicians
    treated PWME as mentally ill, and asked; 'what if you are wrong?'

    The theoretical gains for a PWME in accepting a psychological interpretation
    for their symptoms has led many, like myself, to attempt just that way of
    thinking. Their answer to the question above might be; 'I might get a life
    back, regain some social dignity, have a career and a family, go on holidays
    and not be in pain all the time or worried about money and the future.'

    These theoretical potential gains mean that PWME can readily weigh a
    psychological interpretation in their considerations and many like myself
    have tried this. I've tried every imaginable approach to GET and not just
    over weeks or months but years. Not only did I have months of high quality
    counseling but I am a qualified counselor with a research MA in counseling
    and psychotherapy.

    All this effort resulted in precisely zero benefit to my health but did
    cause severe exacerbations and several relapses. It was not until I began
    antibiotic therapy for the infections that were finally discovered that I
    got some improvement in the disabling symptoms I'd lived with for 17 years.

    As for Meps, I doubt that some can even begin to contemplate the question
    posed above. For them the cost of being wrong is too high for them to
    examine this honestly. They must keep in focus that M.E. is all the fault of
    the patient's weak mind and self-deception. They must keep their focus of
    attention narrow to avoid being disturbed by new scientific evidence. They
    must shut out the shattered lives of patients that lie in the wake of their

    Above all, they must obscure their own motives.

    Peter Kemp
  2. goofgirl

    goofgirl New Member

    Wow, very eloquently stated. You should send this to all of the "Meps" out there who have made our lives so very difficult.
  3. findmind

    findmind New Member

    This is such an indictment of the Meps that I pray you can get it published and into the hands of caring doctors all over the country, and here in the USA.

    Maybe you could get ProHealth to put it in their next newsletter? Please try...I'll write them too, if you think it would help with me asking them to do so.

    Every PWME who subscribes to the newsletter may not be online to read this poignant rebuke of the deception practiced by the very people who are taught to "first do no harm".

    As I said before, it is criminal, and if not sanctioned and punished, they should at least be made (by a class action lawsuit) to recant and apologize for their "error". It could conceivably be in their best interests to do so, as the day is not far away when the evidence will show how wrong they have been. If they can recant their position, it would go a long way towards the healing of the nations who have been bombarded with this terrible disease.

    Then, they could be the patients' bbest advocates, helping them learn hhow to cope with such a devastating chronic illness; wouldn't that be a wonderful turnaround?

    Good work; I hope it can get disseminated broadly and quickly.

    Thanks again for a great article!
  4. tansy

    tansy New Member

    on various forums with permission for it to be reposted so he's keen for it to reach a wider audience.

    tc, Tansy