10. Questions

1)** How do I answer tough
questions?   Answer: Anticipate them and plan. 
Practice using good answers to questions that you
may be asked by friends, family or doctors.  If a
casual acquaintance asks what's wrong with you,
you might say "I have M.E. - Myalgic
Encephalomyelitis, which is a brain and spinal
cord inflammation, very similar to M.S."  This
answer is quick, simple, you don't mention CFS
or Yuppie Flu, and you don't go into describing
how bad it is.  People can associate M.S. with the
idea that even though you look good on the
outside,  you may not be feeling good inside; also,
most people realize that M.S. is a very serious
condition.

2)** Why not call it Chronic Fatigue
Syndrome?   Answer: This illness is much more
than fatigue.  Canada, Europe, Australia and New
Zealand refer to this illness as "M.E."  (Myalgic
Encephalomyelitis), while the U.S. refers to this
illness as "Chronic Fatigue Immune Dysfunction
Syndrome."  The World Health Organization
(consisting of 43 countries including the US,
Canada and Britain) refers to this illness as
Myalgic Encephalomyelitis (M.E.)  The largest
conference on the subject of M.E., held in Albany,
New York (92/10/02) referred to this illness as
C.F.I.D.S./M.E.  In 1994, the World Health
Organization called this illness "M.E." as a
neurological disorder #941107-1  #941107 
{PO}{Don't get upset about not getting recognition
for this illness when you continue to use the name
"Chronic Fatigue Syndrome".  To many doctors
and most of the general public, this name means:
"Chronic" = complainer; "Fatigue" = the only
symptom; "Syndrome" = it's all in your head}
Using "M.E." differentiates it from the symptom
of chronic fatigue, which is common in several
other illnesses such as cancer, M.S., AIDS, and
Lupus.   There has been much discussion about
what name should be used for M.E./C.F.S./
CFIDS/Post-Viral Fatigue Syndrome.  May 12 has
been recognized as world-wide M.E. day, in honor
of Florence Nightingale's birthday.  It is thought
that she suffered from this illness, and was
completely bedridden with it.  Why not call the
illness "Nightingale Syndrome" or "Ramsay's
Syndrome" after the doctor, Gilliam Ramsay, who
spent over 30 years helping M.E. patients? 

     a)** In the Video tape "Living Hell" @
     0:29, Dr. Paul Cheney, explaining the bad
     aspects of the CFS name, states "we need
     to get the "F" out of CFS... The "F" word
     is a little like describing diabetes as chronic
     peeing disease.  Of course, patients with
     diabetes urinate a lot;  but the disease
     covers so much more and has so many
     other symptoms, this name would not do
     the disease justice"...it is equivalent to
     calling pneumonia "Chronic Cough
     Syndrome".

3)** Is M.E. all in your head? 
Answer: No, this illness is not "all in your head";
but, like several other illnesses, it takes time for
the medical community to believe in an illness
which they don't understand.  For example, 20
years ago, people with M.S. were treated similar
to the way M.E. patients are treated today; 15
years ago Toxic Shock Syndrome was an 
unknown illness; 12 years ago people with AIDS
were treated similarly, and  Alzheimer's disease
was considered part of old age.  Breast implants
were "perfectly safe" for the last 30 years until it
was realized that the strange symptoms were
caused by the implants.  There are many illnesses
that have previously been considered as "all in
your head". (#92002 Video1 @ 0:47).  

4)** "But you're really not disabled,
are you?"   Answer:  I cannot even do part-time
work.  A one legged person, or a paraplegic can
work at a job -  I cannot.  Who is more disabled? 

5)** Is there a test for M.E.?  Answer:
At present there is no test for M.E.  Just because
there is no test does not make the illness any less
real.  There was no test for AIDS for many years. 
M.S. has no 100% accurate diagnosing test - in
fact most of the people have been diagnosed solely
on the symptoms they have.  A neurologist has
told me that even the spinal tests are not
conclusive.  I know of people who have been
diagnosed with M.S. that have had a negative test
result for the spinal test. See Chapter 6,
"Diagnosis" for a reference to the failure rate in
tests.

6)** Is M.E. rare?   Answer: There are
1-5 million people in North America and Europe,
and 150,000 in Canada with this illness.  The
CDC (1995) now states their estimate at 220
people per 100,000 having M.E., up 50 times
from their previous estimates.  These are only the
diagnosed cases.  There are 37 support groups in
B.C. alone, so this is not a rare illness.  More
Europeans are affected by M.E. than with AIDS. 
#941107

7) Is AIDS more significant?   Answer:
Insurance companies are on record as saying they
are more worried about M.E., as patients don't die
but continue getting disability payments for many
years.

8)** If M.E. has been around for
such a long time, why hasn't there been more
publicity or a cure?  Answer:  No one dies from
M.E.  Many sufferers are labelled as "lazy people"
so it is not an illness that much effort has been put
into, although the amount of research is increasing
yearly.

9) Isn't this "yuppie flu"?   Aren't
people just overworked, stressed out, and just
wanting to drop out of society? Answer: Most
people that have M.E. were active in the
community before they became ill.  They continue
to make themselves worse by pushing themselves
to get over the illness (eg exercising when it can
be harmful).  There is now a lot of medical
evidence to show that M.E. is organic and not
caused by stress or being over-worked. 

10)** Aren't M.E. patients just
depressed?   Answer: See the chart at the
beginning of this manual in Chapter #4 regarding
M.E. vs Depression.  Most M.E. patients have the
majority of the same symptoms, they don't just
dream up similar symptoms.  Most sufferers find
the definition of M.E. months or years after their
symptoms have appeared, so it is be unlikely that
they would make up having the illness.

11)**  Does anyone believe this is an
illness?  Answer: Dr. Jay Levy, the
co-discoverer of the AIDS virus believes that M.E.
is a physical, organic illness and is working on
finding a test and a cure.  The Canadian
Government believes this is an illness.  They
supply C.P.P. disability benefits for those who
have M.E.   David Suzuki, on the program "The
Nature of Things", tries to show how some
doctors in the medical community are desperately
trying to find a cure for this illness. (#92002
Video1 @ 0:00) This show is the most requested
program in the 25 year history of "The Nature of
Things" (94/11/01). This program is being
aggressively promoted by the CFIDS Foundation
in the U.S.

12)**  Does the government believe
in this illness?  Answer: The Provincial
Government of British Columbia has made a
proclamation that May 12 is officially M.E. Day
(#941109), the same day that M.E. is recognized
world-wide.   The House of Commons Debates
shows that the Canadian government does believe
in the illness.  The U.S. Government has given a
lot of money to the CFIDS Foundation and to
research - in 1994, the U.S. government gave $15
million for M.E. research, which was more than
all previous years combined. (#940601 Video5 @
0:38 - the Nightingale Research Foundation
sponsored an M.E. Forum held May, 1994 in
Vancouver).  The U.S. Centre for Disease Control
(1995) has now added M.E. to the list of
Priority-1 New and Re-emerging Infectious
Diseases.  Other illnesses listed as Priority-1
include Tuberculosis and E.coli.  

13)** If this is real, why hasn't
someone identified the cause?   Answer: 
There has been much research on M.E.  However,
the cause still eludes investigators - this is a
common occurrence with a new illness or disease. 
It was discovered that Legionnaire's Disease is
caused by a bug that is in 60% of our water.  It
took a long time for researchers to find that bug
and tie it to the disease.  For centuries people have
been labelled senile; nowadays, they have isolated
an illness called Alzheimer's Disease. It was felt at
the world conference in Dublin held May 18-20,
1994 (#940806-35) that "in conclusion, there was
a very obvious concern among meeting attendees
that there may be a new virus that does not cause
inflammation or narcosis, as is usually expected of
viruses, but which may affect cell metabolism and
be virtually undetectable
otherwise."