By Gail Kansky

A slide was shown to an appreciative audience of a cartoon where a doctor
is saying to the patient, You have a serious disease of undetermined nature.
Although the cartoon has been used for many years, David S. Bell, M.D., world
known pediatric and adult CFIDS specialist said, "This is what we're still
dealing with."
     Although the symptoms all appear to be connected, they will "from week to
week frequently change," said Dr. Bell.  In his first 100 patients he saw, only
49% had fatigue as the dominant symptom yet a high 97% of the children and
92% of the adults had neurological symptoms.  Doctors "invariably give the
wrong first diagnosis.   They think they're helping by being decisive but this has
only caused heartache in this illness."  Dr. Bell mentioned that he had "lot of
problems with the criteria that the CDC put out in 1994.  Indeed, the
'fatigue' is a very inadequate term to describe the symptom.  The fatigue   'varies
throughout the day and is not constant.'  Those patients who have less
fluctuation generally have a better prognosis.  'The degree of activity
restriction is really quite dramatic' and most physicians do not believe that the severe
degree is possible.
     Pain, too, is of variable intensity and the 'severity may parallel the
fatigue.' One source of pain that patients rarely mention for fear of being considered
even more strange is the skin pain.  Their skin often hurts but 'they won't
tell this to a doctor who already thinks they're a fruitcake.'   Added to the pain
are various sensitivities that develop including light, noise, alcohol, and odor.
     'I think at least 60% of my patients have had an episode of severe
depression caused by the difficulty' of coping with this debilitating
illness, said Dr. Bell.  He believes the main problem is that the autonomic nervous system
(ANS) is not getting enough blood to the brain.  The fatigue one feels is
actually orthostatic intolerance.  It is his belief that the person has
trouble being upright and this is worsened by alcohol, some food, hot or cold extremes, and
other things.
     Peter Rowe, et al published on neurally mediated hypotention in ME/CFIDS
in 1995 (Lancet, JAMA) but Dr. Bell feels orthostatic intolerance is a better
term.  Indeed, 91% of polio survivors had a injury to the brain that caused
othostatic intolerance.  Dr. Richard Bruno, a post-polio expert has shown the
those with post polio syndrome (PPS) have virtually the same symptoms as
those with ME/CFIDS.  Along with the world renowned David H. P. Streeten,
MB, DPhil, FRCP, FAAP, Dr. Bell studied 19 individuals, measuring their red
blood cell (RBC) mass and plasma volume.  Of the 15 female and 4 males
tested, ten were found to have subnormal total blood volume and 12 were
found to have low total blood volume.  This high prevalence research study
was published in the Journal of Chronic Fatigue Syndrome (Vol. 4(1), 1998) and
will again be published for a wider audience in the American Journal of
Medical Sciences.  In layman's terms, this means that the average person has 5 quarts
of blood in their body but those with ME/CFIDS have only 2½ quarts!  In the
patient population, 80% will test for low volume while only 20% will be within
the normal range.  Dr. Bell emphasized that this is 'a discrete abnormality
that can't be psychosomatic.'  This is why patients so often are thirsty and
drink a lot.  Because the fluid does not stay in their body long, they also urinate a
lot.  Some patients have been helped a bit by having an IV saline once a week.
     This brought his talk to another cartoon slide that showed a patient
with an arrow in his heart.  The doctor is saying, 'According to your x-ray, it's
stuck in your leg.' 
     A SPECT scan only picks up areas of relative decrease so there is no test
that can accurately measure total blood volume in the brain.  The blood
pressure is not seen as all that abnormal despite the low blood flow. 
Instead of a tilt table test that only picks up on one particular type of orthostatic
abnormality, he and Dr. Streeten much prefer the method used originally by
Dr. Streeten, known as 'the father of disautonomia', which is an 'in office
orthostatic testing.'  The method is simple and may be done by any physician:
     Take a recombinant pulse and blood pressure(BP)  for 10 minutes while
the patient is lying down.  Do the same thing for 30 minutes while the patient is standing quietly
(with no leaning and standing flat on both feet).  The changes that occur from this simple test that takes the place of a tilt
table test are 'striking.' In fact 'many will faint so it's best to terminate the
test before this happens!' he said amid chuckles from the audience.  In normal,
healthy people, the BP will stay the same.  In a PWME/C, the BP falls but the
pulse will go up (i.e. your heart rate increases).  The BP should be 20
millimeters.  Anything lower shows a state of shock.  Thus, most patients are
walking around in a sort of state of shock.  No wonder they find walking
    'There are five separate abnormalities that can occur when a patient is
standing quietly:'

Orthostatic systolic hypotension where the upper number (systolic) blood
pressure(BP) drops.  The normal person's BP will not drop more than 20

POTS which is postural orthostatic tachycardia syndrome where the heart
rate increases 28 beats per minute.  This is also called idiopathic

Orthostatic narrowing of the pulse pressure where the difference between
the upper number and lower number is measured.  If the pulse pressure
drops below 18, that's considered abnormal.

Orthostatic diastolic hypertension is when the lower number reflects the
systemic resistance.  When standing, the lower number rises to try to push
blood up into the brain.  When this happens to an excess, even if the patient
has high blood pressure, a liter of saline will help given IV.  The numbers
show hypovolemia.

Orthostatic diastolic hypotension that shows a fall in the lower number of
BP.  This is the less frequently seen area in ME/CFIDS.
[The following are for physicians taken from Dr. DHP Streeten's Orthostatic
Disorders of the Circulation, NY: Plenum, 1987:

   Normal sBP: recumbent: 100-142; Standing (4 min): 94-141; Orthostatic change: -9 to +11
   Normal dBP: recumbent: 55-60; Standing: 61-97, Orthostatic change: -9 to +22
   Normal P: recumbent; 55-90; Standing: -9 to +22
   Normal P: recumbent: 54-96; Standing: 62-108; Orthostatic change: -6 to +27
   Othostatic systolic hypotention: fall of 20 mmHg or more
   Orthostatic diastolic hypotension: fall in diastolic BP of 10 mm HG or more
   Orthostatic diastolic hypertension: rise in diastolic BP to 98 mm MG or higher
   Othostatic narrowing of pulse pressure: fall in pulse pressure to 18 mm Hg or lower
   Orthostatic postural tachycardia: increase in hart rate of 28 bpm or to greater than 110 b/min]

     A recent medical article in the New England Medical Journal told about
one type of OI. ('Orthostatic Intolerance and tachycardia associated with
norepiniphrine-tranporter deficiency,' Shannon, et al, Feb. 24, 2000, 342(8))
where ME/CFIDS was never mentioned.  Mentioning this illness can often keep
one from getting published, but Dr. Bell has been in touch with one of the
authors from Vanderbilt University and found the article only bolstered his
theory more. [Ed. Note: The NEMJ has stated that it will not publish on
     There are several types of orthostatic intolerance.  POTS (postural
orthostatic tachycardia syndrome) is the same as neurally mediated
hypotention.  There is also an orthostatic narrowing of the pulse pressure
found in some while others may have orthostatic distolic hypertension where a rise
in diastolic BP to 99 mm Hg or higher is seen. Hyeraderenergic orthostatic is yet
another category where the plasma norepinephrine goes up over 500-600.
This causes anxiety where symptoms include tachycardia, dread, sweats, and
dizziness.  The 'flight or fight' mechanism gets kicked in inappropriately. 
  In OI, realtered norepinephrine can serve as a model of what has gone wrong in
     Thus far, in his large patient population, he has only seen 1 or 2 that
have been completely normal upon testing.  This means your brain us not getting
enough blood.  One patient with high blood pressure was helped with saline
infusions, but this practice is dangerous unless you know the patient has low
blood volume.

[Ed. Note:    Dr. Bell's electronic newsletter which is sent out via e-mail
for $15. annually.  For those who want to order it in print (regular mail), the
cost is $30. and he does accept waivers for the patient unable to afford this.  To
order this online, e-mail cfs-dsb@juno.com or enclose a check and send to CFS
newsletter, 77 S. Main St., Lyndonville, NY 14098.]


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