Lisa C. Blakemore-Brown tells us how it is (all too often) from the
patient’s point of view and I would like to add to it.
This is the case of Mary who was diagnosed with CFS in 1991. She is
a typical example of a person doctors describe as a heart-sink patient.
During the first year or so of her illness, she desperately sought help -
if not a cure, at least relief for the many symptoms that plagued her.
She received neither and was instead ridiculed and demeaned.
Even her blood pressure was not accurately assessed. Taken once
during any consultation, it was inevitably high, but when the prescribed
drugs caused adverse reactions, she knew something was wrong and also knew
that there was little point in relying on doctor “management”. Instead,
she weaned herself off the medication and bought her own blood pressure
monitor. To her amazement she found that not only did her pulse rate
vary from minute to minute, but so did the b/p. At times it was so
erratic that the digital monitor would not register a reading at all.
When it did, it was more often normal to low than high. No one had ever
thought to monitor this pattern and adverse reactions aside, continued
treatment to lower the blood pressure presented obvious dangers.
Hard experience over those first couple of years, taught her that she
was more likely to survive the very real crises that arose from time to
time alone and at home, than in a hospital where she had no doubt she
would be misdiagnosed and inappropriately treated.
Despite the fact that she suffered a very serious neurological
disease which she now knew to be myalgic encephalomyelitis (classified
thus by the WHO), she had to endure the stress and strain of fighting
tooth and nail for essential assistance.
In 1999, the irregular heart beat was there constantly and her
doctor’s response was that she was anxious and needed to exercise. Every
attempt she made to say something was shouted down. He did not bother to
listen to the chest nor take an ECG reading. His attitude was so
intimidating that she felt if she had to call upon him (the only doctor in
a small town) for an emergency home visit, she would have to have a
witness - a friend listening in on the telephone at the very least.
When she made a written request to this person for a referral to a
cardiologist, she was ignored as was her written reminder of the request a
month later.
Eventually she got to see a cardiologist some 8 months after the
initial request and atrial fibrillation was diagnosed. The stress and
strain which the local doctor continued to impose - such as removing her
4 hours of home help per week at a time when she could hardly get out of
bed - worsened her condition.
Two and a half years ago, she moved away from the small town and
went to live in the country. Dr. X was the closest doctor. When asked
if the practice would take on an ME patient, the answer was, “No. That
is a psychiatric disorder.”
By March of this year it was becoming clear that medical advice was
urgently needed. Mary’s usual breathing problems were very much worse and
even oxygen offered little relief. She had gained a great deal of weight
and her legs from feet up were swollen. She could not lie on her side or
her back; she could recline for short periods but the only way she could
breathe with relative ease was sitting bolt upright. For several weeks,
the only sleep she got, was a few snatched moments here and there.
On the 25th March, she contacted Dr. X’s office to ask for an
emergency home visit and was refused. On the 2nd April, she asked again,
and given the telephone conversation with the receptionist that ensued,
Dr. X agreed to come, but with poor grace. It was clear that the visit
concerned the protection of her legal position rather than concern for a
fellow human being.
On arrival, her attitude left a great deal to be desired. She agreed
there was swelling in the legs but not as far as the knees. The chest was
clear, the lungs were doing exactly as they should be doing, and yes,
there was some atrial fibrillation going on there, but since Mary had said
that it had been there for a number of years, it was nothing to write
home about.
The finding that excited her most, was ear wax and it was announced
as if she had discovered the root cause of all Mary’s discomforts. She
instructed Mary to take a mild diuretic, lectured her about the visit
being a one-off and that she had no room in her practice for any more
patients.
A week later, on Good Friday, Mary was rushed to the nearest hospital
where she was immediately admitted with congestive heart failure and
pulmonary oedema. Within the first three and a half days, IV diuretic
treatment reduced Mary’s weight by over 10 kgs. (22 lbs) and the doctors
told her there was probably 20 litres still to go. That is equivalent to
20 kgs. (44 lbs). An echocardiogramme carried out about 5 days after
admittance to hospital, showed a heart function reading of 11. The normal
is between 60 and 70.
It is a myth that ME does not kill. In some cases it does, and death
is usually the result of cardiac complications.
That Dr. X was negligent, abusive and malicious cannot be denied, and
all because Mary suffers ME and is regarded as a “heart-sink” patient.
The reality is that medical science has not even scratched the
surface in a number of areas, and the indicators are that many have a
vested interest in keeping it that way. Even the BMJ does not deny it.
(1) What good would the psychiatric recommendation of cognitive
behavioural therapy, graded exercise and psychotropic drugs for ME
sufferers, have done Mary? More to the point, what harm would it have
done?
Reference:
1. Editorial: “Why do doctors use treatments that do not work?” BMJ
2004; 328: 474-475 (28 February)
Rapid Response:
Re: Re: Sorting the wheat from the chaff
Lisa C. Blakemore-Brown tells us how it is (all too often) from the
patient’s point of view and I would like to add to it.
This is the case of Mary who was diagnosed with CFS in 1991. She is
a typical example of a person doctors describe as a heart-sink patient.
During the first year or so of her illness, she desperately sought help -
if not a cure, at least relief for the many symptoms that plagued her.
She received neither and was instead ridiculed and demeaned.
Even her blood pressure was not accurately assessed. Taken once
during any consultation, it was inevitably high, but when the prescribed
drugs caused adverse reactions, she knew something was wrong and also knew
that there was little point in relying on doctor “management”. Instead,
she weaned herself off the medication and bought her own blood pressure
monitor. To her amazement she found that not only did her pulse rate
vary from minute to minute, but so did the b/p. At times it was so
erratic that the digital monitor would not register a reading at all.
When it did, it was more often normal to low than high. No one had ever
thought to monitor this pattern and adverse reactions aside, continued
treatment to lower the blood pressure presented obvious dangers.
Hard experience over those first couple of years, taught her that she
was more likely to survive the very real crises that arose from time to
time alone and at home, than in a hospital where she had no doubt she
would be misdiagnosed and inappropriately treated.
Despite the fact that she suffered a very serious neurological
disease which she now knew to be myalgic encephalomyelitis (classified
thus by the WHO), she had to endure the stress and strain of fighting
tooth and nail for essential assistance.
In 1999, the irregular heart beat was there constantly and her
doctor’s response was that she was anxious and needed to exercise. Every
attempt she made to say something was shouted down. He did not bother to
listen to the chest nor take an ECG reading. His attitude was so
intimidating that she felt if she had to call upon him (the only doctor in
a small town) for an emergency home visit, she would have to have a
witness - a friend listening in on the telephone at the very least.
When she made a written request to this person for a referral to a
cardiologist, she was ignored as was her written reminder of the request a
month later.
Eventually she got to see a cardiologist some 8 months after the
initial request and atrial fibrillation was diagnosed. The stress and
strain which the local doctor continued to impose - such as removing her
4 hours of home help per week at a time when she could hardly get out of
bed - worsened her condition.
Two and a half years ago, she moved away from the small town and
went to live in the country. Dr. X was the closest doctor. When asked
if the practice would take on an ME patient, the answer was, “No. That
is a psychiatric disorder.”
By March of this year it was becoming clear that medical advice was
urgently needed. Mary’s usual breathing problems were very much worse and
even oxygen offered little relief. She had gained a great deal of weight
and her legs from feet up were swollen. She could not lie on her side or
her back; she could recline for short periods but the only way she could
breathe with relative ease was sitting bolt upright. For several weeks,
the only sleep she got, was a few snatched moments here and there.
On the 25th March, she contacted Dr. X’s office to ask for an
emergency home visit and was refused. On the 2nd April, she asked again,
and given the telephone conversation with the receptionist that ensued,
Dr. X agreed to come, but with poor grace. It was clear that the visit
concerned the protection of her legal position rather than concern for a
fellow human being.
On arrival, her attitude left a great deal to be desired. She agreed
there was swelling in the legs but not as far as the knees. The chest was
clear, the lungs were doing exactly as they should be doing, and yes,
there was some atrial fibrillation going on there, but since Mary had said
that it had been there for a number of years, it was nothing to write
home about.
The finding that excited her most, was ear wax and it was announced
as if she had discovered the root cause of all Mary’s discomforts. She
instructed Mary to take a mild diuretic, lectured her about the visit
being a one-off and that she had no room in her practice for any more
patients.
A week later, on Good Friday, Mary was rushed to the nearest hospital
where she was immediately admitted with congestive heart failure and
pulmonary oedema. Within the first three and a half days, IV diuretic
treatment reduced Mary’s weight by over 10 kgs. (22 lbs) and the doctors
told her there was probably 20 litres still to go. That is equivalent to
20 kgs. (44 lbs). An echocardiogramme carried out about 5 days after
admittance to hospital, showed a heart function reading of 11. The normal
is between 60 and 70.
It is a myth that ME does not kill. In some cases it does, and death
is usually the result of cardiac complications.
That Dr. X was negligent, abusive and malicious cannot be denied, and
all because Mary suffers ME and is regarded as a “heart-sink” patient.
The reality is that medical science has not even scratched the
surface in a number of areas, and the indicators are that many have a
vested interest in keeping it that way. Even the BMJ does not deny it.
(1) What good would the psychiatric recommendation of cognitive
behavioural therapy, graded exercise and psychotropic drugs for ME
sufferers, have done Mary? More to the point, what harm would it have
done?
Reference:
1. Editorial: “Why do doctors use treatments that do not work?” BMJ
2004; 328: 474-475 (28 February)
Competing interests:
None declared
Competing interests: No competing interests