A Hummingbirds' Guide to M.E.

by Gurli Bagnall

11 February, 2004

 

INTRODUCTION

One recent Sunday morning,  a short programme about ME was
shown on TV1.  I missed most of it, but caught a person I believe
to be Professor John Campbell Murdoch, ex University of Otago,
and a name known to many in the international ME community.

He told the interviewer that victims of ME in New Zealand tend to
go underground. They  rely as far as possible, he said, upon
alternative therapies rather than medically prescribed
treatments.  The interviewer commented that this was an
indictment against his profession and  Murdoch (if indeed it was
he) did not disagree.

Resorting to alternative therapies makes Dr. John Patterson's
testimony before the current U.K. House of Commons Inquiry
into the influence of the pharmaceutical industry very pertinent to
ME sufferers.

Patterson is the executive vice president for product strategy,
licencing, and business development at AstraZenecca (UK) and
he stated that the public did not understand what "acceptable
levels of risk were".  ( Drug company chiefs accept the need for
more openness.  BMJ 22 January 2005; 330: 163)

One must ask, acceptable to whom?  Since the patient is
dismissed, does Patterson refer to himself?  The drug
company?  The prescribing doctor?  The first two certainly have
a conflict of interest and it is entirely possible that the latter does
as well.

 

In Holland recently, the Health Council presented its Chronic
Fatigue Syndrome Report  ( under which Myalgic
Encephalomyelitis is included) to the Dutch Government. The
report expresses the same opinions  as those held by UK
professor of psychiatry, Simon Wessely, who is an influential
self-professed expert on ME/CFS.  Wessely openly admits to
having multiple conflicts of interest and just as openly, defends
the system that allows them to happen.
http://bmj.bmjjournals.com/cgi/content/full/327/7410/341

But opinions are not scientific evidence and when such evidence
along with the WHO's categorization of ME as a neurological
disorder, are not just dismissed but ignored,  then one has a
duty to ask questions  -  such as: What exactly IS the agenda?
One thing is certain, it has nothing to do with patient welfare.

During the course of my own long illness, like most who suffer
ME,  I have received abysmal treatment  -  often amounting to
abuse  -  at the hands of the medical profession. The reason I
believe, is because most  doctors are influenced by those who
preach the Wessely  school of thought on ME.  It is the easy
option  -  a quick way to dismiss a complex problem.   People
who are thus influenced are too idle or lack the intellectual
acumen to investigate and think for themselves.  And then there
are, of course, those  who have conflicts of interest.

I read somewhere not long ago that medicine is the only
profession that labours incessantly to destroy the reason for its
existence.  I cannot remember who said it, but the statement
does not seem  unrealistic  judging by the widespread
dissatisfaction, lack of ethics,  mismanagement, conflicts of
interest,  malpractice and preventable error. And not to be
forgotten, is the arrogance displayed by many when responding
to such concerns.  The impression they give is that destroying
the lives of others, is their God given right.

If there is any justice at all, those who have exerted their
malignant influences for power and  monetary gain,  causing
pain, misery and death will one day face their accusers in a court
of law.  I doubt I will live to see it, but I  hope evidence such as
mine will contribute to that end.

This open letter relates to events that took place in 2004  -
events that were the result of years of medical neglect.

Gurli

``````````````````````````````````````````````````````````

OPEN LETTER TO CONSULTANT,  Dr. JH

11 February, 2005

Dear  JH

It is some months since we last met, but I feel sure you
remember me none the less.  As a reminder, I am the woman
who was admitted to ICU in April, 2004, with heart failure and
pulmonary oedema.  You and your colleagues saved my life by
means of the diuretic, frusemide, administered intravenously.

(As a matter of record, it was only one week prior to my
admittance that I had received a reluctant home visit by a doctor
who indicated that my main problem was wax in the ears.  But
then she did/does not believe that ME is a physical disease and
despite the signs of the above complications, she left me on my
own to die.)

The echocardiogram you ordered was carried out on about the
4th day in hospital and it showed the ejection fraction (heart
function) to be 11  -  the normal being in the range between 65
and 80, depending upon which of your colleagues was giving the
advice.

The first thing you said to me after receiving this result, was that
my only chance of survival, was a heart transplant.   Then you
asked if I wished to be resuscitated if I stopped breathing.   My
answer to both, was:  No, thank you.

By the time I left hospital 10 days later, I was nearly 14kgs lighter
due to fluid output.  At the time, I was grateful that my life had
been saved.  What you might find  hard to believe is that I was
even more grateful for the kindness with which I had been
treated by all.  As a sufferer of Myalgic Encephalomyelitis (ME),
I have but rarely experienced kindness at the hands of your
profession.

But then,  heart failure is something that is, at least in part,
understood.  That it and its underlying causes are not FULLY
understood  is clear for there is no cure and it falls under the
heading of "terminal".

However,  I was concerned  (though not surprised) that neither
you nor any of your colleagues at the hospital took Myalgic
Encephalomyelitis (ME) seriously because this would have given
you all a clearer picture of how and why heart failure developed,
and how to best treat it without causing further harm.

I WAS  surprised, however, at your complete lack of interest in
my medical history  -  indeed at your outright refusal to listen to
any of it.

Apart from the notes you obtained from the Dunedin Hospital
where atrial fibrillation was diagnosed in about 2000, the only bit
of history I managed to get across, was that ME had been
accepted as medical misadventure by the Accident
Compensation Corporation (ACC).  And believe me, the ACC
reject any claim which requires long term support, if they can get
away with it.

The reason for mentioning the ACC claim was not to be
threatening but  to show that  there was official recognition of ME
as a physical disease and as one that can be iatrogenically
triggered.

While in hospital,  I had reactions to both the ACE inhibitor and
the beta blocker.  I also had an abdomen which looked like a
piece of black marble after just two or three injections of an
anticoagulant.   Despite the pressure imposed, and except for
the frusemide and one other diuretic,  I thereafter refused to take
anticoagulants in any form and only  small doses of a different
ACE inhibitor and beta blocker.

Within a few days of leaving hospital,  something was very
wrong.  First and very alarming,  was a feeling of  agitation that
was difficult to control. It was the typical sort of thing that would
have a run-of-the-mill psychiatrist slavering over his prescription
pad without giving any thought to an adverse reaction, which it
clearly was.

The second problem concerned my weight.   Having been told
that the best way to check for fluid retention was by weight (1 litre
fluid equating to 1 kilo), the diuretics no longer seemed to be
working for my weight was all over the place.

I was taken back to the hospital  ward while you were doing your
rounds, and  without seeing me, you increased the frusemide
from 80 to 250mg per day.  Idiot that I was, I was grateful.  As for
the agitation, from then on, I only took half of the ACE inhibitor
and the beta blocker, and it disappeared.

But something was still wrong and a few days, later on 1 June,  I
wrote to your colleague TE with whom I had an appointment as
an outpatient in July.  The letter should be on my file and you
have, presumably, read it.  In part, it stated:

"As matters stand,  my vision has deteriorated dramatically
during the past 3 weeks.  I can only read (with difficulty) through
the distance part of my bifocal lenses and the eyes are strained
and sore.  I can no longer see a clear image on the TV screen
and cannot read any text unless it is very large.  The dry
grittiness and sensitivity to light are constant.  I am typing this in
a size 24 font.

"The weakness is extreme and even though I have dropped 18
kilos, I am very unsteady on my crutches. Given this and the
eyes, my days are spent mostly in bed lying with eyes closed
drifting in and out of sleep.  Nausea overwhelms me at times
and it has developed into dry retching on a couple of occasions.

"Fluid restriction is now out of the question.  My mouth and
around the bend in the gullet, are constantly dry and gummed
up.  The only relief of moderate duration, is when I eat  -
accompanied by fluid.   I am drinking a huge quantity of water
between meals also and  each glassful gives relief for all of 30
seconds  -  literally. My tongue is constantly sore.  My lips are
sometimes cracked and caked and the terrible taste in my
mouth simply will not go away."

I then went on to mention low blood volume as found in ME
patients by David Bell et al, and ended my letter by saying:

"Given the medication I have been on, I do not believe that a test
for blood volume at this stage would give an accurate result.  The
only way around it is to try administering IV fluids.  At first it may
seem contrary to everything you have tried to do, but I have
considered this for a long time  and in my unusual circumstances
it makes sense to me.

"My life is in your hands, TE. Please help me.

"This letter will serve as  a record for the file, that I take full
responsibility for any adverse outcome to IV fluid treatment.

TE did not see fit to reply to this very urgent plea.  Finally I had to
call him on the telephone and his response to me was that I had
"to expect some dryness".  He did, however, offer me a referral
to the local hospice  -  which, in speaking to the occupational
therapist later, he denied.  Only  TE could tell you what his motive
for the denial  was.  (That he had made the offer of the referral to
the hospice was very clear to my daughter who had listened to
my side of the conversation. )

My condition continued to deteriorate and when I could barely
see more than blobs of colour, my optometrist kindly made a
home visit to test my eyes. He said that the deterioration since
my last test was extreme,  and before considering any remedial
action, I should be tested for diabetes.  My daughter went out
immediately and bought the necessary equipment to test for
blood sugar.  The level was so high, it was off the scale.

Neither my family nor I were in any doubt that I was dying and
that same day (10 June), I was taken to outpatients where a
blood test showed the sugar level to be 58.  The normal reading
is between 4 and 8.   I was immediately admitted to the ICU.

As I now know,  diuretics cause an 11 fold increase in diabetes.
(BMJ 1994; 308: 855)

TE had refused to consider IV fluids or to help in any way.  Now
all of a sudden,  here I was hooked up to a drip for 3 days with
insulin added.

This time, I spent 13 days in hospital, and upon discharge was
given the usual report  which is, presumably, intended  for the
patient to hand over to his or her GP.  According to this
document, the only problems I had complained about when I was
seen in the Emergency  Department, was weakness and
lethargy.  "Eyesight subjectively improved" appeared  under the
heading "Treatment". But apart from insulin,  WHAT treatment? I
felt the use of the word "subjective" was offensive to both me and
the optometrist for it called into question the reality of the
deterioration in vision.  It was after all,  the optometrist who had
the competence (which was sadly lacking elsewhere) to
recognize the effects of severe dehydration.  For the record, it
took three months before my vision was back to what it had
been.

No mention was made in the report of dehydration or IV fluids.
Frusemide, which had been prescribed at 250 mg per day,  was
now listed at 40 mg per day.  It did however, record the
earth-shattering news that I had been advised not to drink fruit
juice.  One might almost have believed this was the sole cause
of the high blood sugar level.

When you think about the dehydration and its severity, it is hardly
surprising that the blood sugar was so high.  It was after, all, in
concentration.

That the report was misleading cannot be denied and I assume
the young doctor who wrote it,  was under orders.

Thereafter my outpatient appointments were with you which
pleased me because I felt you now understood that when I said "I
cannot tolerate this or that drug" you would take me seriously.
With each visit, I informed you that I had whittled the drug doses
down further and you were amenable to my  lowering the doses,
as long as I didn't stop taking them altogether. I also made a
point at each visit, of presenting you with credible and
authoritative  evidence that ME  is a physical disease, and
especially that low blood volume is commonly a problem.  You
were never impressed.   As for blood volume, you would not
even refer me for testing.

Finally the day came when, apart from the frusemide and
paracetamol (for muscle pain),  I stopped everything including
insulin for the blood sugar levels were now stable.  That was the
day you completely lost patience and figuratively threw me out on
my ear  -  although you magnanimously said  that if I was
teetering  on the brink again, you  would come to the rescue.

I suppose it is uncharitable of me, but I wonder if that was wishful
thinking.  After all it would be the ideal opportunity to say:   "What
can you expect when the silly woman wouldn't take her
medicine?"

I have to say I felt really irritated with you and the article you gave
me  on that final day  -  an article which you had carefully
searched for on the internet.  It concluded that ME (or as you
probably prefer, the chronic fatigue syndrome), is a motivational
disorder. From where I'm sitting, it is a moot point as to where
such a "diagnosis" belongs  -  with you or me.  From my point of
view, if I had lacked motivation, I would have been dead long
before I met you.  My nagging on about ME and low blood
volume may have annoyed you, but you cannot deny it  showed
motivation!

It intrigues me that you chose to pass this message on in print
rather than making the verbal "diagnosis".  I can but assume that
angry women frighten you.

At this time, ten  months after the initial admittance to hospital, I
no longer take ANY  drugs at all.   The diurectics went down the
toilet about 3 months ago.  The muscle  pain which I have
endured for years, has eased to a generally bearable level; the
pain killers are only kept in case of emergency.

While initially the huge amount of fluid that had accumulated was
reflected in my weight, some months ago I began to feel that
using weight as a guide was not reliable.  The physical signs of
fluid retention were not there and even on a low and less
frequent dose of frusemide, I felt I was  heading back towards
another diabetic crisis.

I stopped taking diuretics altogether and started to measure all
fluid going  in and coming out.  I have been doing that now for
three months and  have found that whether I passed more or less
fluid than I took in over the course of 24 hours,  weight is no
indicator at all.  I found that the pain killers contribute to fluid
retention; that my weight has become more stable;  that on my
comparatively better days when I stay up longer, I tend to retain
fluid, but if I spend time reclining with   feet higher than the heart,
and (better still) with the head lower than the heart at the same
time,  I pass more fluid than I take in.

It is not just the fact that the weakened heart is better able to do
its job in that position, but it relieves the pooling in the lower
extremities which, if you had taken the trouble to find out, you
would know that this is typical in ME.

The 19 day period between 10th and 29th January is a typical
example.  My records show that when the total amount of
retained fluid was taken away from the total  amount of fluid
passed over and above intake,  I had actually passed 3.085
litres more than I took in.  And that is WITHOUT diuretics.

No wonder I was feeling as if a crisis was looming.  In following
your advice,  I was in a constant state of dehydration.

Since you do not believe in ME and the low blood volume found
in some sufferers, I wonder how you would explain this.  I could of
course make a few educated guesses.  For example:  This is
not possible. The patient  doesn't know how to measure
properly.  The patient is trying to prove a point by lying.   The
patient is  an idiot.

How am I doing?

The spring/summer months have become  a worsening
nightmare for me during the past 15 years.  This is the time of
the year when the heart is at its worst.  In about 2000, atrial
fibrillation was diagnosed,  but as the Dunedin Hospital notes
confirmed, the echocardiogram done at that time,  showed a
healthy heart.  It has now deteriorated dramatically as we have
seen by the echocardiogram taken in April, 2004.

The exacerbation at this time of the year is caused by allergies
which have developed  -  typical in ME.  Since you are largely
dismissive of my allergies to chemicals, you may say (as  has
been said before) that the seasonal allergies are  just anecdotal
and cannot be taken seriously.  What I say is that I no longer care
about such opinions for they are self-serving. They are cop-outs
and have nothing to do with reality or patient welfare.

This year I made enquiries about air filtration and the best air
conditioners within my means from that point of view.  Having
located a unit that deals with pollen and other substances, I had
one installed in my bedroom in November.  As a result, I have
had a better summer than I have had for a very long time.  For
the first spring/summer in many years, I have not struggled for
breath nor have I coughed for hours on end, and while still
engaged in a few gymnastics, the heart is steadier.

In fairness to you, I do not believe I  ever mentioned the fact that
cardiac crises always occur at this  time of the year.  But then in
fairness to me,  I have tried to impress this upon several
members of your profession in the past,  only to be greeted with
dismissal at best and sneering at worst.  Who needs it?

The filtration/air conditioning  unit, the supplements  and herbal
remedies along with the weekly acupuncture I receive   -  you
know..all that stuff you described as hocus-pocus and
quackery  -  have served me well.  I am still here,  without a heart
transplant,   and better than when I last saw you.

Here's the point I want to make to you:

Your business is supposed to be health, but only on your terms
-   irrespective of whether or not those terms are in the patient's
best interests.  If someone does not respond or cannot tolerate
your methods, tough! Correct me if my memory has let me down,
but last time I looked, I believe  The Health and Disability
Commission's Act stated that the patient should be given all the
options and allowed to make the choice if that is his or her wish.

The only options you gave me were drugs  -  drugs  that have
nearly killed me at one time or another.  You saw what happened
with the frusemide yet you continued to pressure me into taking
substances I told you I could not tolerate.  My life was on the line,
yet coercing me into obeying your orders was more important to
you that doing something that might actually have helped me.

Why, for instance, when you knew the diuretics were causing
such havoc, did you not tell me that a weakened heart works
better  and pumps more blood to the organs including the
kidneys, if the feet are up.  It seems so  basic now I've figured it
out, but at the time, I was too ill to think straight;  it took a long
time of fumbling about in the dark before I found some answers.

And my goodness  -  I cannot resist this little home truth  -   how
that irritates your profession!  How DARE the patient be so
presumptuous as to find medical answers?  Let them die by all
means, but for God's sake let them die in ignorance!

At this point, what I would like, is to have another
echocardiogram taken.  I suppose it is most unlikely that there
has been an improvement in cardiac functioning, but then again,
you have to admit we must have been doing something right.

I suspect, however, there will be a problem.  If there is an
improvement in cardiac function, I do not believe you would want
to know about it.   So I guess I am not likely to receive a referral.

Cynical?  Absolutely!   That is what certain experiences in life
can do to you.  But cynicism (in case the point has been
missed),  can also be a life saver.

Take care of yourself.  It would be too tragic if you learned the
reality of ME the hard way, as indeed a number of your
colleagues have already done.

I remain

Yours sincerely

Gurli Bagnall