M.E. & FM
Manual --Main Page
Updated 97/02
15. Doctors
1)**Introduction. Some doctors are
great listeners, some are supportive, some will
try new therapies and help to fill out insurance
forms. Sadly, some doctors dealing with M.E.
and F.M. patients are not good listeners, are not
supportive, will not co-operate to try new therapies
or help with filling out forms. This is the biggest
complaint at most support group meetings.
{PO}{You pay their salary, you have a right to
proper care.} If you find a good doctor, treat
him/her like gold. I have tried to put together as
many helpful suggestions as possible on how to
deal with doctors or specialists. Do not try to
change a "bad" doctor - you will waste a lot of
valuable therapy time.
2)** References. Doctors with M.E.
#941005-51. Working with your doctor
#941005-22.
3)** Interview your doctor. Many
doctors who have several M.E. or F.M. patients
are no longer taking new patients. I suggest you
try to stay with your current G.P. - if he is good,
and willing to learn. When going to a new G.P.
or specialist, be blunt and specific - ask him/her
these questions:
a) ** "Do you believe that M.E. or F.M. is
an organic illness, not caused by a
psychological condition?"
b)** "Will you be willing to try various
treatments/ therapies, or send me to
specialists to determine if I have the
illness?"
c)** "Will you read the (highlighted)
information I give you?"
d)** "Will you support me with regard to
filling out forms (eg CPP, insurance),
letters, and legal matters (if needed)?"
If you do not get a definite "Yes" to all of these
questions, do not continue to see this doctor. In
leading support groups and talking with other
M.E. and F.M. patients, I have been told
repeatedly of doctors that "fence sit" for years,
until the patient needs help and gets told that these
symptoms are "all in your head". The direct
approach discourages patients from staying with a
doctor that does not believe in the illness, or who
will not help you. You must provide your doctor
with information or materials. Highlight areas in
any article that you feel might be important, so
that your doctor does not waste his time reading
something that does not apply. A list of good,
informational articles about M.E. follows:
e)** Nightingale's Physician's Guide
Pamphlet #92033
f)** CFIDS's Physician's Guide. The
CFIDS Association publishes a quarterly
newsletter (CFIDS Chronicle) with a 3-
page summarization of M.E. found at the
back. The information contained in this
summarization is very helpful for your
doctor - it is a quick overview from a
reliable source. #92028
g)** M.E.B.C. Physician's Guide #93057.
h)** Annals of Internal Medicine #88003;
#92045
4)** College of Physicians &
Surgeons phone #1-800- 461-3008; #733-7758,
are located at 1807 West 10th Avenue, Vancouver,
B.C. V6J 2A9. Through this organization, you
can ask questions about your rights as a patient.
This organization is the watchdog for physicians.
If you are unhappy with the treatment you are
getting from your doctor, you can lodge a
complaint, preventing someone else from having to
go through the problems you had to endure. You
may also be able to ask information on a doctor.
5)**Patient responsibilities.
a)** Don't overwhelm you doctor.
Doctors that have M.E. or F.M. patients
get overwhelmed with a long list of
symptoms. Space out your visits and don't
cram too much into one session.
Remember the doctor has to get paid for
your visit - he only gets a specific dollar
amount per visit. He is not paid for the
amount of time you are there. Make your
visits regular - once a week. Make your
appointments shorter so that the doctor has
time to spend on each concern you have.
Consider making your appointments earlier
in the morning, so that your doctor is not
overwhelmed from the day's work.
b)** Consultation. If you need more time
with your doctor, when you book your
appointment, ask for a "consultation". The
doctor gets paid more, and he has the time
to deal with your concerns.
c)** Be very careful what you say to
doctors or specialists to avoid
misunderstanding (eg doctor's question
"How is your muscle pain?" with the
answer "I can tolerate the muscle pain"
may be translated by the doctor to the
insurance company as "He feels he could
tolerate the muscle pain while going back
to work" - even though that is not what was
said. The doctor is forgetting that you
suffer from many other symptoms beside
muscle pain that "will not allow you to go
back to work").
d)** Dealing with doctors. When you see
a specialist after six months to a year, write
out a list of what has been happening with
your symptoms - your general health is 5%
better, these symptoms are worse, these
symptoms have stayed painfully the same,
and these symptoms are better. You might
add a statement explaining what you have
been doing to try to help your situation.
This prevents misunderstandings, and the
doctor can focus on which symptoms are
important to you, not on ones that he thinks
are important. Reasons for doing this:
(1)reduces the misdirection, frustra-
tion, or misunderstanding that may
happen.
(2)** Scenario: you understood
your doctor to say it was okay to
drive now, you then have an
accident. ICBC cancels your
insurance because they talked to the
doctor and he states that he never
said you could drive. You must
now pay all the costs out of your
own pockets. The doctor may have
mentioned this off-handed, or didn't
quite mean it that way. If you have
it in writing, then you have
something to back you up.
e) ** Doctor Diary. This can be given
every time you go to a doctor/specialist. It
is one page, and doubled spaced so that
your doctor can make notes. Good medical
records are essential. Most doctors (I'm
told) don't take very accurate and detailed
notes. A medical diary is important
because:
(1)** it cuts down on the doctor's
time in writing notes, and leaves
more time to talk;
(2)** you keep a copy for your
memory in your 3-ring binder;
(3)** there are no misunder-standings
about what was said, or
treatments to follow;
(4)** changing doctors means a
summary of your medical file is sent
from your "old" doctor to your
"new" doctor. Using the diary, you
can give all your records to the new
doctor, with highlights of important
facts.
(5)** specialists need to know
details;
(6)** symptoms are written down
that fill the diagnosing criteria -
these might otherwise be missed;
(7)** it allows you to steer the visit
to dealing with your concerns;
(8)** when you become involved in
a legal matter (and ICBC in case of
an accident) due to the illness, the
more complete the medical details,
the better your case will be.
(9) the top half of the diary deals
with the past:
(a) confirms the previous
appointment, what was
discussed and decided, eg
drug therapy, dosage &
strength;
(b) how treatments have
been working;
(c) what major and minor
symptoms have developed,
are getting better, staying the
same or improving;
(d) details of a specialist's
visit;
(e) what has happened since
the last visit, eg flu for 4
weeks, next vacation;
(f) smaller details to point
out but not discuss - this
saves time;
(10) the bottom half of the diary
lists what you want to discuss
during this visit and the future:
(a) coming events;
(b) new treatments;
(c) major symptoms and
action to be taken.
(11)** Set a standard early on with
your doctor. During your visit keep
your copy of the diary out and refer
to this agenda as the visit
progresses.
f)** Travel Assistance to specialists.
Medical Services Plan may pay for your
car, bus, or ferry trip expenses to see a
specialist who is not in your area.
g)** Specialists' time sensitive. You may
need to see a specialist every six months,
or the referral you obtained from your G.P.
may run out.
h)** Specialist biases. It is important when
you are dealing with a specialist (or reading
material about one) to remember what their
biases are. Video5 #940601
(1)** An insurance company pays
anywhere from $600 - $12,000 to
get a negative assessment on your
illness from their specialist. This
can also be a major source of
income. Even if an article is
published in a medical journal, you
have to assess where the author's
bias is.
i)** Specialists need to see what you are
REALLY LIKE. When you see a new
specialist or doctor, let him see what your
typical day would be like. Avoid doing
what most people do - resting 1-2 weeks in
advance - so that what the specialist sees is
you on a "good day". Instead try to show
him/her what you are like on an
"AVERAGE DAY" - go walking, or
whatever it takes to make sure your doctor
sees you in this condition. Tell the doctor
what you are like without medications (eg
sleeping pills and anti-depressants mask
symptoms, but that does not mean you no
longer have them) so he knows that without
this medication you are in worse shape than
you are presenting yourself in. Bring a
friend and your (highlighted) "Doctor
Diary".
j)** Plan your response to certain
situations and questions. Make sure that
you put your situation in the best possible
light. This aids in giving answers that are
helpful and well thought out.
k) Don't "burn your bridges." Your doctor
may be asked by Canada Pension Commis-
sion, your social worker, or a judge what
his thoughts are regarding your illness. If
he is already "mad" at you, he may give an
unfavourable report.
l)** A yearly physical and blood test
should be carried out, as some patients are
misdiagnosed as having M.E. or F.M., or
they find that in addition, a new illness has
developed.
m)** Some of the illnesses that produce
symptoms similar to M.E. or F.M. are
discussed in the Nightingale Physician's
Guide to M.E./C.F.S. #92033-l6, and in
Chapter 6 "Diagnosing".
n)** Plan the fastest treatment possible.
The average waiting time to see a specialist
is 2-4 months, and about the same time to
get a specific test (e.g. MRI scan). Keep
an accurate list of all drugs (including dates
and medication strengths), symptoms,
doctors you have seen, and all the tests you
have taken. Keep a diary (similar to the
one at the end of the manual) of what has
been happening to your symptoms over
time and what your symptoms are like.
Have your doctor investigating 3 to 4 areas
of treatments at the same time (eg booking
an appointment for a neurologist, trying to
get a CAT scan, starting a therapy, etc.)
There is such a long waiting period for
each appointment, that it is more time
efficient to be working on more than one
area of investigation at a time (appoint-
ments can always be cancelled). When you
change G.P.s or go to a new specialist,
usually a full history is not passed on to the
new doctor. Ensure that you keep a list of
all the tests you have had so that you don't
waste time. This lets the new doctor know
which tests you have or have not taken.
o)** Waiting lists. Go on a waiting list for
the new specialist or test. When someone
cancels they can fit you in that day. Phone
regularly (once every 2 - 4 weeks) to
inquire about an appointment so that your
name comes to their mind quickly.
p)** When you are seeing a new doctor,
take your spouse, or someone who is
familiar with your symptoms, to the
appointment. This person can help with
explanations as well as verify some of the
symptoms. Don't ask permission for this
person to come with you, simply take them
into the examining room. If the doctor
questions you, state that you have poor
memory or cognitive abilities, and having
this person there would improve the
session.
q)** Bring your "specific history letter" to
the first appointment with the new doctor
or specialist. By using this letter, you
make the most of the visit for which you
have waited such a long time.
r)** You are allowed to record any
conversations as long as the person you are
recording is aware that you are taping.
Voice-activated micro-cassettes, about the
size of a bank cheque and 1" deep, can be
purchased for $50 - $60 from London
Drugs or Radio Shack. If you are having a
hard time remembering things, it might be
a good idea to tape your visit.
s)** Doctors aren't mind readers. If you
feel he will use the information wisely, tell
him everything that is going on in your life
including more tension with your spouse,
financial problems, work problems, etc.
The doctor may be more apt to fill out a
favourable disability form and have more
sympathy and patience if he knew your
situation.
t)** Medical file. The Supreme Court of
Canada has ruled that you are allowed to
see photocopies of the contents of your
medical file to ensure no inaccuracies are
present, and to have these reports explained
to you.
(1)** The receptionist can give you
the file for you to take to your new
doctor, or
(2)** you can borrow the file for a
few minutes, then photocopy any
pertinent pages for 5 cents a page;
or
(3)** they may decide what to
photocopy, then charge you 25 - 50
cents per page.
(4)** The Canadian Medical
Association Policy Summary
(#94009-7) states that "a patient has
the right to examine the record and
to copy all the information
contained in it, including
consultation and other reports
obtained from other physicians".
The "CMA holds that physicians
should be prepared to explain, upon
request, the information contained
in the medical record." The patient
has a "right to control disclosure of
his or her medical information to
another." Patient authorization for
such disclosure to a third party (eg
lawyer, insurance adjuster, or
employer) must be obtained, and
should always be specific." Ask
your physician for a copy of all
specialist's reports; also tell the
specialist that your G.P. has agreed
to give you a copy of all his reports.
(5)** Bad reports haunt you.
{PO}{People have mentioned to me
that they can't seem to get around a
bad report from several years
previous. My suggestion is that
when you go to a new doctor, if
there is nothing of significance in
your previous medical file, and only
if there is an unfounded problem,
do not get your records sent to your
new doctor.}
(6)** History. Medical history
information can be detrimental. {PO}{Be very
cautious as to how much information you give a
new doctor. Several people have said that their
doctors keep bringing up their bitter divorce or
some other major problem that happened years
previously. Unless the information has a direct
bearing on your current medical status, I suggest
you avoid going into details of a past divorce, a
past terrible home life, or a previous depression,
etc. Some doctors tend to magnify and fixate on
these problems.}
u) Send your physician a subscription to
M.E. Canada, M.E.B.C., F.M.B.C., or
F.M. Network.
v)** Following is a list of specialists who
are familiar with M.E. and F.M. Some
doctors require a G.P.'s referral. There
are many specialists who are not taking
new patients. This list is for your
information only - please use it well.
Phone to confirm their policy (see above).
(1)** If you have or are aware of a
physician who is "M.E. or F.M.
friendly" please contact me, so that
I can add his/her name to this list.
(2)** When you contact a new
doctor, all you need to say is that
you heard that this he/she was a
conscientious physician who assisted
people with the illness.
(3)** This list was created with the
help of many support group leaders
in the Valley, as well as members of
the Abbotsford and Surrey support
groups, and through the many
contacts I have in B.C.
w) List of 183 Supportive Doctors:
!!!!!! This list is on the hard copy.
6)** Doctor's Responsibilities
a)** Patient to doctor. Bea Arthur, playing
the part of Dorothy Svornak in a 1989,
1-hour special edition of the "Golden
Girls", (she has M.E., and I am told, had
to quite the show because of the illness)
spent most of the episode portraying the
agony that M.E. patients have to go
through daily. Dr. David Bell, speaking at
the M.E. world conference in Albany N.Y.
in 1992, used the following quote of Ms.
Arthur's from the show speaking to her
insensitive specialist: "I don't know when
you doctors lose your humanity, but you
do. You know, if all of you, at the
beginning of your careers could get very
sick, and very scared for a while, you'd
probably learn more than anything else.
You better start listening to your patients.
They need to be heard, they need care, they
need compassion, they need attending to.
You know, some day you're going to be on
the other side of the table, and as angry as I
am, and as angry I always will be, I still
wish you a better doctor than you were to
me."
b) Listen to the patient's symptoms. Take
notes so that you don't forget what was
said.
c)** Realize that everyone has varying
symptoms of varying degrees. Thoroughly
test to eliminate all other possible illnesses,
so the proper treatment can be received.
d)** Don't make a hasty diagnosis. It does
matter to the patient what label he has been
given (eg a "depressed patient" label does
not get respect from other doctors, or the
insurance companies). Most disability
policies terminate benefits after 2 years if
you have a depressive illness.
e)** Study and take time to understand the
illness. Read the CFIDS Chronicle for
Physicians, or ask your patient to find
material and highlight the pertinent
information for you.
f)** If the patient looks fine, it does not
mean that the patient feels fine - similar to
M.S. or Alzheimer's - looks can be
deceiving. Symptoms are very cyclical.
Do not assume that a patient is getting
better simply because they look better
during this particular visit.
g)** Not all the symptoms are caused by
M.E. or F.M. Patients have a
malfunctioning immune system, and are
susceptible to many illnesses, which might
be causing some of the symptoms.
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End of Chapter
M.E. & FM Manual --Main
Page
Updated 97/02