Having CFS means that we have to get
pretty good at getting what
we want out of the medical system. Yes,
we have a
controversial disorder. Yes, lots of
people don't take us
seriously. But that's no reason to despair!
With a proper
approach, you can go a long way in getting
what you need out of
doctors.
There are a number of books and articles out
there giving advice on what to
do when you go to a doctor. They usually
say things like: "Be an
informed medical consumer." "Write down
all your questions so you
remember to ask the doctor about them." Or
"Make a list of all your
medications so the doctor knows what you are
taking." These are all
excellent pieces of advice, and I think you
should do those things.
But what I've found is that these articles
fall woefully short
for people with CFS. A large part of
this is because our condition
is poorly understood and hotly debated even
among doctors. In
fact, many of us have been treated disgracefully
by physicians.
(although I hasten to say that some physicians
have gone above and
beyond the call of duty to help us, too.
Unfortunately, there aren't
enough of this latter type.)
So I want to give some practical tips on how
to deal with doctors
and with the medical system. I'm assuming
here that it's very clear that
you do have CFS and that you have gotten a
proper and thorough workup
that has ruled out other medical problems.
You don't want to try to push
a physician into giving you a CFS diagnosis
while leaving a serious
and/or treatable condition undiagnosed.
First, YOU MUST DO YOUR HOMEWORK! It
is unjust and unfair
that you should have to do this when you are
ill. But you will
deeply regret it if you do not.
Begin by educating yourself thoroughly about
your illness. You
cannot rely on your physician to know about
this syndrome. If you
write to the CFIDS Association in North Carolina,
they will send you
basic information on CFS. Cost: $1.00.
I also urge you to spring with
$25 and join the CFIDS Association.
The new member packet alone is
a treasure trove of information. Their
address is:
The CFIDS Association of
America, Inc.
P.O. Box 220398
Charlotte, NC 28222-0398
They have a toll free line (800) 442-3437,
with basic recorded info,
and an excellent 900 number with more recorded
info on different
topics at (900) 896-2343.
There are also many electronic resources available
for the dedicated
modem user. These can be found in the
CFS Electronic Resources file
put together by Roger Burns. It may
be obtained on many computer
bulletin board systems, or through e-mail
over the Internet:
Send to: LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU
GET CFS-RES.TXT
I also have a draft FAQ that contains this
information, that you can
get by sending a request (internet only) to
camilla@primenet.com
Next, you need to get ahold of some medical
resource books. You
will need these not only to better understand
CFS, but also because
we are prone to develop other medical problems
as well.
I recommend that every person with a chronic
illness go purchase the
following books:
1. The Merck Medical Manual. This
book is an invaluable guide to
all different kinds of medical conditions,
although it is terribly
inadequate on CFS. I recommend it because
people with CFS frequently
develop many secondary medical problems, such
as problems with their
urinary tract, irritable bowel syndrome, vision
difficulty, a wide
variety of neurologic problems, etc.
The Merck Manual is like a
mini medical textbook.
Cost: About $30 new, older editions are
often available in second
hand bookstores. Buy it new if you can
afford it.
2. A good medical dictionary. I
recommend Taber's Cyclopedic
Medical Dictionary, although there are many
other good ones out
there. You are going to need this to
understand what the Merck
Manual says if you don't have a medical background.
Cost: Taber's is about $20 new, but older
editions from used
bookstores are just fine.
3. A good professional pharmacology reference.
The two I have had
recommended to me by physicians over and over
again is Goodman's and
Gilman's _The Pharmacologic Basis of Theraputics_
and the AMA Drug
Evaluations. Get new editions if you
can possibly afford it.
Of these two books, most people with CFS will
probably prefer The AMA Drug
Evaluations. This book lists more practical
concerns, like how often a
particular side effect occurs. Many
physicians prefer the AMA Drug
Evaluations for this reason and if you can
only afford one of the above
books, get this.
Goodman's and Gilman's is good for very detailed
information. If you want to
know everything there is to know about the
drug you've just been prescribed,
(especially the chemistry and how it's metabolized)
this is the book
for you.
Cost: Goodman and Gilman's runs about $100.
The AMA Drug
Evaluations are $50 - $100. If you buy
used, try to get one no more
than two or three years old; new drugs are
constantly being
introduced, particularly antidepressants and
psychoactive drugs.
4. An anatomy and physiology text.
Gray's Anatomy is the best and
most detailed, but a less detailed text from
a used bookstore is
perfectly adequate. You will need this
book to figure out what the
Merck Manual is saying. You may also
find that you want a more
detailed physiology book. I recommend
_Human Physiology: The
Mechanisms of Body Function_ by Vander, Sherman
and Luciano. A used
edition is fine also.
These books are usually available in public
libraries. I urge
you to get copies of your own, however.
I'm aware of the financial
constraints a lot of us are under from not
working, but CFS often
prevents us from going to the library just
when we most need to.
You should also learn how to search Medline.
Medline is the database of
the US National Library of Medicine and contains
current and past
citations from thousands of medical and biomedical
journals around the world.
You don't have to have a modem of your own
to search it; often local
medical school libraries provide free access
to the community. For more
information you should contact:
The National Techical Information Service at
1-800-423-9255 or
write to them at:
NTIS
5285 Port Royal Road
Springfield, VA 22161
I have a small FAQ on Medline that you can
get my sending me an
e-mail request at camilla@primenet.com
Next, you must take your doctor visits quite
seriously.
It's natural for people who are very ill to
want to go to the doctor
and place all their problems in his or her
hands. We all want to
say: "Here, make it all better now."
Unfortunately, we people with
CFS often can't do this. We may be in
an adversarial position with
the doctor (for example, if you are seeing
a physician employed by a
disability carrier who is trying to deny you
benefits.) Or we may
simply have found a 'regular guy' kind of
MD, who doesn't specialize
in CFS and who doesn't know a whole lot about
it.
You need to realize some things about doctors.
First, they're
folks, like other folks; they're not gods
and they're not demons.
Most are good people. A few are truly
awful. All are fallible, and
no one doctor can possibly keep up with all
the new medical information
coming out.
Physicians are usually *very* overworked and
under a lot of stress.
The office hours in which you see him or her
are not the only hours the
doctor is working. They see hospital
patients before and after office
hours. They spend hours filling out
forms for disability carriers.
They are awakened in the middle of the night
with emergency calls. 70
hour work weeks are not uncommon.
Doctors (at least the good ones) are very worried
about committing
malpractice and about the good opinion of
their colleagues. (Indeed, a
bad reputation can ruin a doctor's career
for life.) Primum non nocere
("First, do no harm") is drummed into
doctors from the day they first
enter medical school. Thus, they tend
to be conservative in their
judgements and are cautious when evaluating
new medical information.
This is can be frustrating for us folks with
CFS (especially when the
doctor wants positive lab or physical exam
findings and we don't have
any.) But remember, we *want*
our doctors to be careful
and conscientious, so we should be willing
to cooperate with them.
How does all this translate into action?
It means that the more work you
do for the doctor, the more likely you are
to get what you need. By
this I mean that you need to present your
medical history and symptoms
clearly and concisely, in a form as close
as possible to what they need
to write a proper consultation report.
You need to have your references
ready so they can see that your (and their)
opinions are backed up by the
scientific community. If there is a
particular treatment that you want
to try, you should have all the journal citations,
the scientific
rationale and the treatment details (This
is called a protocol and includes
things like what dose of drug to give for
how long, how to tell if the
treatment is successful, etc).
You should also realize that doctors are pretty
much like the rest of the
population as far as attitudes go. You
can't count on them being
totally unbiased, any more than you can count
on any other person being
completely free of pre-judgements. It's
important to get past whatever
preconceptions a doctor has and to get him
or her dealing with your real
medical problems.
And finally: You *must* remember that you may
have to build a legal case
to collect disability at some point.
How your doctor views you and
your illness can make or break your case.
This is how I act whenever I see a new doctor:
First of all, I dress up. I treat the
visit as though I were
going to a job interview. It's unfortunate,
but doctors, like other
folks, often decide how seriously to take
someone based on how they
dress and how they conduct themselves.
And if you do NOT want to be
labelled as having primary depression, dressing
well and being well
groomed is a must! An important part
of making the diagnosis of
depression is how carefully groomed you are.
If you are
unkempt, it may be assumed that you are not
taking care of your
appearance because you are depressed.
I always insist on meeting the physician fully
clothed, and I take
all my relevant medical records with me.
I NEVER let them put me in
an exam room and tell me to put on the gown
if I am meeting a
physician for the first time. I make
it a point to shake his or
her hand, and properly introduce myself.
I think it's best to
conduct yourself as though you were in a business
meeting.
Second: I ALWAYS, take literature to
a new doctor! I NEVER assume that
they know anything about CFS. In particular,
I take the "CFS: A Primer
for Physicians" document, put out by the Mass.
CFIDS Association and Jay
Goldstein's article from the CFIDS Chronicle
on his hypothesis that CFS
involves a disorder of the limbic system in
the brain. I have a file of
several hundred study abstracts on CFS and
Fibromyalgia Syndrome,
taken off Medline, that I always take as well.
If you want to try
anti-depressants, take the Jay Goldstein article
"The Neuropharmacology
of Chronic Fatigue Syndrome" from the Fall,
1993 issue of the CFIDS Chronicle.
Once doctors see that you have searched and
read the literature, they take
you much more seriously. All of the
above articles are available on my
(free) BBS, at 213-766-1356, or by e-mail
(internet only) from
camilla@primenet.com.
Third: Take your medical records with
you. I've found that simply
showing my records to a doctor helps impress
upon them how ill I am
and how much I have looked for help with it.
Plus, it tells the doctor
that you are well prepared, and that you will
probably also see what
he/she writes down about you. Again,
this can be crucial in disability
cases. Also, some facilities (particularly
HMOs) have a tendency to
lose your records, so you cannot assume that
your doctor has already
seen all the relevant information.
Important to know: Social Security does not
usually send your medical
records to their evaluating physicians ahead
of time. So it's especially
important to bring your records when seeing
a doctor employed by the
Social Security Administration.
The easiest way to get copies of your records
is to find a sympathetic
physician or clinic that will let you have
the records sent there and
then give you a copy. Failing that,
find out the law in your state.
In most parts of the US, you are legally entitled
to a copy of your
records, although the provider may insist
that you be with a physician
when reviewing them and may require a reasonable
fee for copying (often
about $25).
The Public Citizen Health Research Group (Ralph
Nader and Dr. Sydney
Wolfe's consumer advocacy group) puts out
an excellent booklet on how to
get your medical records. It costs about
$10 and lists what the laws are
in each state in the US. You can get
it by writing to:
Public Citizen Publications
2000 P Street NW
Suite 600
Washington, D.C. 20036
If you're like most people with CFS, your medical
records are
quite extensive. I recommend that you
get a loose leaf notebook
and notebook dividers (the kind with the little
plastic tabs). I
have my notebook broken down by medical speciality,
rather than
by date. I've found this makes retrieving
essential reports much
faster, and also greatly facilitates a physician
reviewing
your records. I keep the most important
specialities in the
front divisions: (i.e., my neuropsych report,
my consultation with
a CFS specialist, the psychiatrist report
that says I don't have
primary depression, and the neurologist reports.)
Lab results I
keep stuck to the back of the notebook with
metal tabs, most recent
on top. This is how many hospital charts
are organized, and so
physicians are already familiar with how to
review the info.
Other useful tips:
* Take someone with you, preferably a person
who is well informed about
CFS, and not easily intimidated by
doctors. It's a terrible burden
to a person with CFS to have to remember
questions, stand up to a
doctor, do all this reading, etc.
We're usually walking around in a
fog, having trouble remembering what
we had for breakfast! A good
'patient advocate' can be a godsend.
Write down all your questions
and give them to this person to ask!
* Unless you're specifically going to a holistic
physician, don't
bring up alternative medicine, yeast
syndrome, mega-vitamins,
acupuncture, herbs, etc. Forget
getting any traditional physician
to take these seriously. You
will only harm yourself by
giving a negative impression to the
doctor.
* Become familiar with the Centers for Disease
Control definition of
CFS. If you meet the case definition,
make sure your physician
knows this. If you have trouble
remembering all your symptoms,
write them down. This may be
crucial in deciding a disability case.
* Take paper and a pen whenever you visit a
doctor, so you can write
down things you wish to follow up on.
For people dealing with HMOs:
Obviously, a person with CFS is in a much stronger
position if they
can pick their own physician, preferably based
on the recommendation
of a local CFS support group. But if
you are dealing with an HMO,
don't despair. Even in HMOs, there is
often a doctor somewhere in
the group who is up on CFS. He/she may
be the only one in the whole
organization, and you may have to look real
hard to find them, but if
you persevere, usually you can find one.
(This section may also be
applicable to UK readers, since the British
National Health System
is much like an American HMO.)
HMOs vary a lot. I currently have Kaiser
coverage, and here's what
I've found dealing with them:
The primary docs, (internal medicine and family
practice) really are
not very knowledgable about CFS and view it
as their job to keep you
from getting referrals to specialists if they
can.
The specialists are another story entirely.
Particularly in
the neurology dept, they are very up on CFS.
A friend of mine with
CFS also had a very positive experience in
the Rheumatology dept.
Allergy and Immunology specialists are another
group that tend to be
well informed about CFS.
If you are very clear about what you want and
very up on the research,
you can get what you want out of the primary
docs. Which is to say:
a referral to a specialist! To get this,
you need to state clearly
why you want the referral, and have literature
and/or lab results to
back you up.
For example, to see a neurologist, have a specific
problem in mind.
You may be having non-specific neuralgias;
you may want treatment
for a serious sleep disorder. To see
a rheumatologist, take in
stuff on fibromyalgia and clearly present
your case for why you
believe you have it.
You are also ahead of the game if you have
a name of a particular
doc that you want to see. And don't
hesitate to ask the nurses who
they recommend. I finally found the
one doctor in all of Los
Angeles Kaiser who specializes in CFS by asking
a nurse friend who
works there to do a little digging for me.
Finally, realize that you may have to go outside
the HMO to get what
you need and fight with them later about making
them pay for it.
Learn your rights inside the organization.
Most people don't
realize that many HMOs let you change your
primary physician simply by
calling the membership services dept and requesting
a new one.
Maybe you're going to have to go through the
entire family practice
dept before you get a doctor you like.
So what? The most important
thing is: don't give up!
Copyright 1995 by Camilla Cracchiolo.
May be freely reproduced for
non-profit purposes *only*, if the article
is reproduced in its
entirety, credit is given and this notice
remains attached.
