What should we say to patients with symptoms unexplained by disease? The “number needed to offend”
BMJ 2002; 325 doi: https://doi.org/10.1136/bmj.325.7378.1449 (Published 21 December 2002) Cite this as: BMJ 2002;325:1449All rapid responses
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To whom it may concern:
It is as once alarming, disappointing and predicatable that your
article does not raise the issue of symptoms that cannot be explained by
disease, being explained by adverse drug reactions. I am the victim of
medical malpractice and a severe, permanent and disabling adverse
reactions to a prescription drug - Cipro. I have taken it upon myself to
learn about drug adverse drug reactions (ADR's) in general and
fluoroquinolones in particular. Dr. David Flockhart, Department of
Clinical Pharmacology at the University of Indiana, who has been
characterized as the preeminent expert on fluoroquinolone ADR's, has
expressed his opinion that 1 of 3 users of fluoroquinolone antibiotics
suffers some measure of central nervous system (CNS) ADR. It is well
established that fluorine and quinine are neurotoxic. (I have no doubt
that numerous other fluorinated drugs, as well as drugs containing quinine
such as Larium, are neurotoxic as well). The host of risks associated
with fluoroquinolones, from spontaneous tendon rupture, peripheral
neuropathy, permanent psychoses, to auto-immune disease is mind boggling.
Yet practitioners hand these drugs out like candy, and yet, are unaware of
the risks.
Are you aware that the "leg weakness" that you use as an example can
be explained by the use of statin drugs, another class of fluorinated
drugs? It has recently been reported that statin drugs can cause motor
peripheral neuropathy, and that "leg weakness" is a typical symptom of
such an ADR.
My point is that, if I have learned nothing from my ordeals, I have
learned that doctors generally are woefully uninformed about the risks
associated with the drugs they prescribe, how to recognize an ADR when
they see one, and how to treat it. I have learned that practitioners do
not read the FDA required warnings, but rather rely on the representations
of drug company "reps" as their sole source of information about the KNOWN
risks associated with drugs. Further, I have learned that doctors don't
understand that the FDA does not require all of the known risks to be
listed in the warning, and that not all of the risks of a newer drug are
known.
I respecfully submit that this is a problem of monumental proportions
and probably explains a significant part of the topic you write about -
symptoms unexplained by disease. I suggest that you consider
investigating and writing an article on this issue. Hopefully, your
funding isn't solely from drug companies. If it is, I don't expect that
funding for such a project would be approved.
Thank you for your attention to this matter.
Al Viener
Competing interests:
None declared
Competing interests: No competing interests
Barbara R Rubin wrote: I know a child who was ill for over a year
with "recurrent flu" only to find out the illness was connected with the
monthly spraying of his classroom with Dursban insecticides. By the time
that was discovered, there were permanent immeune system and neurological
sequelae. Once environmental factors were invstigated, there was a wealth
of positive data to be found (including suppression of AchE levels etc.)
The effects of pesticides on the immune and neurodevelopmental system
form other threads in the developmental tapestry. Awareness of the
increase in childhood illness/disorder is on the increase but the
dissemination of causes - such as pesticides - seems piecemeal. From a
clinical perspective, I have lost count of the times a mother has told me
that no explanation could be found for a child's problems and in an
increasing number of cases - given Government Guidelines - many find
themselves facing social workers - even more unable to explain the problem
- and the problems are blamed the mother. In a number of cases the
child/children have been removed from the family, in some, forever, and in
certain cases of child death, due to there being `no explanation` as to
why the child became ill and died, mothers are in prison.
Yet there is awareness, for example, of information about the
increase in illness and disorder in relation to non human environmental
effects. The Third European Ministerial Conference on Environment and
Health, in 1999, in London, stressed the importance of 'protecting
children from undesirable environmental exposures'(1) and emphasised their
'special vulnerability'.
They report: `In general, the health of children in the European
region showed continuous improvement through the last decades up to now.
However, at the same time reasons for concern are recognised. Warning
signals are, for example, the recrudescence of diseases previously under
control, such as diptheria and tuberculosis, the dramatic rise of chronic
diseases such as asthma and allergies'
One of the speakers spoke in tapestries: `Children are not little
adults but are particularly vulnerable to pollutants because of their
immature biological development;behaviour;metabolism;greater exposure to
pollutants, relative to body weight and longer life at risk than adults.
"Its the timing of the dose that can make the poison". The best way to
safeguard the health of a population is to ensure that disease does not
arise in the first place. Childhood presents valuable opportunities for
disease prevention. Not only do lifelong chronic diseases that start in
childhood have a profound effect on the quality of life, they are also
very expensive to treat. Early intervention can prevent not only the loss
of healthy, productive adult lives caused by childhood diseases but also
the costs of adult diseases that are of childhood origin. Some pesticide
residues in food and water, because they can accumulate in the particular
diets of children, are of concern, especially for possible impacts in the
brain and on behaviour. Environmental causes of autism, attention
deficit/hyperactivity disorder (ADHD) and lowered IQ are being
investigated and seem to be involved in some of the increases in these
disorders. Some other chemicals that can damage the brain and affect
behaviour are lead, mercury, PCB's and dioxins which can be absorbed via
food, water,air,surfaces and consumer products. Some chemicals (PCB's,
dioxins) accumulate in body fat and are passed on to the foetus and
infant. Although more dose is passed on through breast milk, the lower,
pre-natal dose, via the mother, appears to be more hazardous because of
the greater vulnerablity of the foetal brain'(2)
The conference concluded that there was 'an urgent need to evaluate
and reduce children's exposure to environmental hazards from conception to
adolescence, taking into account the specific susceptibility and activity
patterns of children and infants. This builds the rationale for specific
policies to protect the foetus and the child from harm, and to promote a
healthy environment dedicated to them.'
If we also consider the increase in the number of surviving very
premature and sick infants whose systems will be even more vulnerable to
such pathogens, as yet more threads in the explanatory tapestry, it is no
surprise that we have seen a dramatic rise in neurodevelopmental disorders
in the last decade. It is most unfortunate that the trend of advice has
been to blame the victim instead of reweaving the developmental tapestry
with new threads of pragmatic information.
Perhaps the 4th European conference in Budapest in 2004 `The Future
for our Children` will herald a new dawn.
1. Bertollini, von Ehrenstein, Tamburlini. Children's Health and
environment (1999) WHO Regional Office for Europe. The Third European
Ministerial Conference on Environment and Health.
2. P.J. van den Hazel. An Overview of current problems and actions.
WHO 1999
Competing interests:
None declared
Competing interests: No competing interests
A friend's child who had unexplained headaches and other symptoms
improved dramatically after dietary changes. These were suggested by a
specialist in nutritional medicine. The local consultant paediatrician had
been unable to help and the parents had a private appointment. I am not
sure if Dr Moore always investigates the possibility of food intolerance
before saying "next please" but if not perhaps this is an option worth
considering. If he does and that fails then perhaps he should say I am
unable at present to explain your child's problems. You may be able to
find information on the internet that would help. I am aware of a number
of cases where adults have improved their health by using the internet to
find information and at least the parents are likely to find some sympathy
there.
Competing interests:
mother whose unexplained illness "it's your age medear" was a renal problem
Competing interests: No competing interests
In her response to paediatrician, Philip Moore, Barbara Rubin’s
common sense cannot be faulted.
Her comment: “Agreed, patients may respond negatively to physician
uncertainty …..” refers to Philip Moore’s statement that being honest (“I
know of no other investigations that are likely to help us at this
stage”) does not often work.
I wonder how Dr. Moore expects it to work? Does he expect the
patient to stop being a nuisance - to simply go away and cease
complaining? Is it inconvenient, even annoying, that the patient (whose
life is disrupted by one or more distressing symptoms) seeks information
which the doctor may not have? If there IS a shortcoming here, with whom
does it lie? Attitudes are quickly sensed, and the patient’s reaction
could well reflect the doctor’s body language as he thinks those (quote):
“…magic words…. ‘Next please’…”
Dealing with members of our own species is not always easy, but a
little empathy goes a long way.
Competing interests:
None declared
Competing interests: No competing interests
Dear Sir,
The issue is not that patients want "possitive labels" it is more
that they want 'correct' labels.
Perhaps through no falt of your own (as you will read) you may not be
informed of all the facts, therefore I refer you to the following document
- dated the 17th of this month (1), so you may have a more objective
understanding the current' situation.
With respect,
Paul Lynch
(1) Response to the MRC Research Advisory Group (RAG) Draft Document
for Public Consultation on “CFS/ME” Research Strategy dated 17th December
2002 - M Hooper. EP Marshall. M Williams.
http://www.meactionuk.org.uk/Initial_Comments.htm
Competing interests:
None declared
Competing interests: No competing interests
Editor:
Your excellent ejournal published Voracek and Fisher's study (1) in
which they refer to an `optimal design` in relation to curves of women,
and the changes and relative changes in those curves ' Body mass index
(weight (kg)/(height (m)2) and waist:hip ratio in women are linked to
fertility, endocrine status, risk of major diseases, and longevity.1-3
Health related optimums for body mass index (20 or slightly lower2) and
waist:hip ratio (0.7 or slightly lower3) are also maximally sexually
attractive to men. 1 3 According to evolutionary research, these
attractiveness optimums reflect evolved optimal design and thus should not
be subject to temporal change.3 This assumption is not consonant with the
decline in the optimally attractive body mass index that has occurred in
the past few decades, as exemplified by fashion models depicted in the
media.
There is a suggestion that something's changing...that the `optimal`
can be pushed.
Kenneth Campbell (2) responded to P Atkin's article (3) on paradigm
shifts by talking about the essence of the phrase pushing the envelope,
and how in the world of aeronautical engineering, the envelope is a
collection of curves to describe the maximum performance of the aircraft
and how these limits are pushed over the edge.
'In using www.dictionary.com Dr Atkin has obtained an accurate
definition of the use of envelope in the expression "pushing the envelope"
but has lost the essence of the phrase. At the Wordorigins.org site he
could have found the following more evocative account of the phrase's
origin.
Pushing the Envelope This is an aviation term. It means pushing the
aircraft to its limits, especially in the context of flight testing.
Envelope has several secondary definitions referring to a collection of
curves (mathematical and engineering jargon). So in the world of
aeronautical engineering the envelope is the collection of curves that
describe the maximum performance of an aircraft. To push the envelope is
to take the aircraft to the edge of what it was designed to do and try and
take it beyond.'
On a similar theme of pushing boundaries, Stone et al (4) on what
should be said to patients with symptoms unexplained by disease, listed
the following among the references:
"Unexplained" somatic symptoms, functional syndromes, and
somatization: do we need a paradigm shift?
Sharpe M, Carson A.
University Department of Psychiatry, Kennedy Tower Royal Edinburgh
Hospital, Edinburgh EH10 5HF, United Kingdom.
Medically unexplained functional or somatization symptoms are somatic
disorders that are not adequately explained by physical disease processes.
The way in which these disorders have been understood and managed has
varied over the history of medicine. However, only in the past 100 years
has the "mental" explanation predominated. A benefit of this trend has
been the development of effective treatments in the form of
"antidepressant" drugs and cognitive-behavioral therapies; a cost has been
limited integration of these treatments into medical practice and lack of
acceptability to patients. We suggest that there is much to learn from
physicians of the pre-Freudian era. Their etiologic theories are now
supported by new scientific evidence, and their clinical practice provided
ways of making psychological treatment acceptable to patients. We propose
a paradigm shift in which unexplained symptoms are remedicalized around
the notion of a functional disturbance of the nervous system and
treatments currently considered "psychiatric" are integrated into general
medical care.'
These bmj responses (there are others too) interweave three
`disparate` articles and show the tapestry nature of information (5) and
perhaps also a reflection of the shared fascinations which dominate the
thinking of people at this juncture in our `evolution` and Editor's
choice. We are fascinated by the way in which we are trying to shift
beyond our apparently naturally designed maximum performance - pushing the
envelope. The curves of maths and women may be pushing at boundaries - and
formerly disparate professional groups are finding themselves at the edges
of other groups' thinking in a quest for explanations which make more
sense.
The metaphorical leap is upon us - but many are hanging on for grim
death to the last threads of an old order - and there is a danger - and
some evidence - that some have taken advantage of the confusion by
claiming ownership of the `no man's land`, dominating thinking and
beginning the training. There are few who have reached the stage of at
least peering over the edge who are likely to feel confident enough to
disagree as this is beyond cutting edge and many may feel in awe of those
who seem to grasp this interface thinking. There will also be bandwagon
jumping and sycophantic behaviour.
If we're going to shift anywhere worth being, we should shift our
communications together in an interwoven `tapestry` manner. It is of no
scientific or social advantage to have no answers in one's own profession
- but quick enough to grab a thread of another to bring what appears to be
novel thinking to a problem - then force this onto others without open
sharing of combined knowledge.
In my tapestry world many threads are interwoven - the possibility of
subtle evolutionary change interweaves with other variables at multiple
levels of explanation - including the impact of environmental effects
which are NOT related to the psyche and to relationships - but which could
very quickly become so once disability and disillusion with the only world
in which we can live, sets in.
Pushing the envelope in the way we assess and support people must not
keep as a sole focus the enigmatic idea of on any `advantage` of a
paradigm shift without considering all the evidence in front of us and
the effect of our thinking on people.
So - again in the tapestry world - we must think in tapestries and
think EARLY before they become hopelessly tangled and any old charlatan
can fool us into thinking they hold the keys to the new order - and they
alone know what it looks like on the other side, how we should all think
and how we should all be trained.
We are on the brink - but we still have a choice as to whether we
want to be robots or compassionate people as we shape our futures.
1. Voracek and Fisher Shapely centrefolds? bmj,com 21st December 2002
2. Kenneth Campbell Pushing the Envelope bmj.com 20th December 2002
3. Atkin P. A Paradigm Shift in the medical literature bmj.com 21st
December 2002
4. Stone et al What should we say to patients with symptoms unexplained by
disease? 21st December 2002
5. Lisa Blakemore-Brown Reweaving the Autistic Tapestry 2002
Competing interests:
None declared
Competing interests: No competing interests
wgh
We witness over and over again the genious of that immaculate
psychiatrist of the 50's Michael Balint. Fortune had it they he took a
keen interest in family medicine and decided to delve to all depth to the
characteristics and nature of the doctor-patient interaction. His work has
far from been challenged and basically, after reading his classic book
over again recently (1) I am convinced that there is really nothing much
very new under the son. He observed 50 years ago that what the patient
seeks much before a cure is the reassurance that the reason for his
suffering is actallt existent and has a real name. Even a devastating
uncurable disease is less offending than stating honestly: " I don't know
what it is you are suffering from". Suggested long ago, and reestablished
and confirmed today by this important and extremely helpful study.
The doctor , the patient and his illness.
Competing interests:
None declared
Competing interests: No competing interests
Dear Dr. Moore,
Your astonishment at the length and intensity of some responses to the Stone article is indicative of someone who has not had to deal with the consequences of the assumptions being made by Dr. Stone et. al. He is not searching for a particular term but advocating a state of mind in which doctors are encouraged to believe themselves competent to differentiate between organic illness and non-organic psychiatric disorders in which patients think they are ill. The mere suggestion of this conclusion is sufficient to deprive a patient of insurance reimbursement for medical care, family support, work accommodations for restricted functioning or sick leave, respect of society etc. The power of words in physician chart notes or those uttered to family members indeed holds the power of life and death over the patient. Too many chronic illnesses, particularly in women, have gone this route only to be identified years later as medical science and physician education (not always in step with each other) come together in new ways.
Agreed, patients may respond negatively to physician uncertainty and, as a former health care worker in pediatrics, I understand the weight of responsibility upon your shoulders. But honesty requires physicians to withhold a diagnostic label in the absence of postive findings. A diagnosis of hysteria or functional illness (or any other euphemism) similarly lacks postive findings - but allows the doctor to close the book on the patient to his own satisfaction. There are simply too many unkowns for a doctor to do that with any certainty and supportive counseling can still be recommended to help the patient deal with as yet undiagnosed illness.
I know a child who was ill for over a year with "recurrent flu" only to find out the illness was connected with the monthly spraying of his classroom with Dursban insecticides. By the time that was discovered, there were permanent immeune system and neurological sequelae. Once environmental factors were invstigated, there was a wealth of positive data to be foundl (including suppression of AchE levels etc.). The parent of this child has gone public with this story in many news articles. I am similarly disabled after years of exposure to pesticides to which I am biochemically unable to process - only learning of this fairly common phenomenon after years of puzzlement and sometimes even abuse from the medical profession.
Your stated input to patients is by no means judgemental as you invite the patient to join you in determining further pathways to investigate or treat the problem. It is only a problem if your chart notes deny your own uncertainty of the source of the ailment and deny the patient further opportunity to seek answers elsewhere. Sometimes saying "I can do no more for you, next patient" is not a failure but a favor when your knowledge and willingness to investigate further has been exhausted in a given case.
Competing interests:
None declared
Competing interests: No competing interests
I was very interested to read about the collaboration between the
British Psychological Society, of which I am an Associate Fellow, and the
RCPCH, in relation to training of paediatricians.
Suzy Chapman has highlighted the inclusion of CFS as disconcerting,
especially given clear differences in guidance re: CFS which will
inevitably cause considerable confusion to medics.
Looking down the list, I can also see many other areas which would
lend themselves to confusion. For instance, adoption breakdown. A recent
UK court case was won by a family who adopted a child but had simply not
been told about the child's severe ADHD with co-morbid conditions,
resulting in terrible violence toward the adoptive mother. He is now in a
care home being treated for his neurodevelopmental problems. Perhaps they
were told his early behavioural problems were simply a function of his
early `abuse`, which would disappear once in a `safe` environment? The
Council responsible for omitting the tell the truth about this little boy,
will now have to find a considerable amount of tax payers money to give to
the adopting family, but the outcome has enormous implications for our
social/medical and psychological services and the guidance they give to
professionals.
There continues to be enormous behind the scenes differences of
opinion in precisely this interface between paediatrics and psychology,
with not only no opportunity to easily debate concerns publicly, but with
active attempts to prevent such matters being brought out into the open.
Against this backdrop it is no surprise that appropriate research is thin
on the ground, the guidance confused.
To add insult to injury, it appears that Royal bodies are trampling
over all these concerns, ignoring the lack of research, and have been
putting their heads together to appoint individuals to `train`
paediatricians according to their own way of looking at a multiplicity of
autoimmune/neurodevelopmental disorders which will continue to confuse in
the absence of open debate and robust research. There are none so blind as
those who don't want to see.
I would like to know more about the Project Director, the nature of
the training and the scientific and clinical literature used to develop
opinions and provide a curriculum for this crucially important training.
Thank you to Suzy Chapman for alerting me to this interesting
collaboration.
Competing interests:
None declared
Competing interests: No competing interests
Re: What should we say to patients with symptoms unexplained by disease? The “number needed to offend”
It has been brought to my attention that the supplementary data for this article had disappeared. I am therefore uploading it again
Competing interests: No competing interests