By Camilla Cracchiolo, RN

Posted on the Fidonet CFS Echo
Date: 02-16-94

I get a lot of requests by e-mail for CFS information. This is a draft of a little document I put together, to e-mail to people when they request info, along with the regular stuff I send. I would appreciate feedback, particularly about books and medical systems outside the USA.

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 so poorly understood and so hotly debated even among doctors. In fact, many of us have been treated disgracefully by physicians.

So I want to give some practical tips on how to deal with doctors and with the medical system.

To begin with, 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.

First, you must educate yourself thoroughly about your illness! You absolutely 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.

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. In particular, we tend to have vision problems, urinary and gynecologic difficulties, sleep disturbances, allergies, and a variety of neurologic symptoms.

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 Physician's Desk Reference. I don't care how many pharmacology books for the layperson they put out, there is just no adequate substitute for this book. It contains the package insert information on virtually every prescription drug that comes out in the USA. It is put out every year, and you should try to find an edition that is as up to date as possible.

    Cost: About $45 new. If you buy used, don't get one more than 2 or 3 years old. New drugs are introduced all the time, particularly in anti-depressants 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.

These books are all also available in any public library. 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 need to the most.

Next, you must take your doctor visits quite seriously.

Remember: the doctor is not necessarily your friend. This is not to say that your doctor is your enemy, although there are some situations where this may be the case; (for example, if you are trying to collect on a private disability insurance policy and the company employs the physician; or if the Social Security Administration sent you to the physician.) This is also not to say that there are not many fine, caring doctors out there. I have had the good fortune to know a number of them. But you cannot simply place your health in his or her hands.

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.

Thus, your goals in dealing with your doctor are:

  1. To give the best possible impression of yourself.

    Doctors are like anyone else. Some are kind, warm, friendly people and some are cold creeps. They have the same prejudices the general population has. If they were racially prejudiced or sexist or biased against poor people before they went to medical school, they will most likely come out the same way. YOU DO NOT WANT TO PLAY INTO ANY STEREOTYPES THAT A PHYSICIAN MAY HAVE.

  2. To make your doctor give your case the time and attention that it really needs.

    This is harder than you may think.

    Physicians are drastically overworked. Don't let 9 to 5 office hours fool you. The doctor is most likely making hospital rounds before the office opens, and up late at night doing paperwork when it closes.

    CFS cases are complicated. They often require many visits to many physicians, and take up a lot of time on the doctor's part. This is particularly true if you are trying to build a case to collect disability. CFS patient needs don't fit well into a medical system geared towards short, quick patient visits. Further: they are frustrating for doctors, who like to have clear cut physical findings and lab tests. When documenting for disability, there are a great many time consuming forms they must fill out. YOU MUST IMPRESS THE SERIOUSNESS OF YOUR SITUATION ON YOUR DOCTOR.

  3. To put them on notice that you expect to be taken seriously and treated with respect.

    This is where doing your homework really comes in. You may need to suggest specialists that you wish to see, or particular tests, such as neuropsychiatric workups to document problems with memory and visual perception. If you want those things, you'd better have all your reasons properly laid out. THE BETTER INFORMED YOU APPEAR, THE MORE LIKELY YOU ARE TO GET WHAT YOU NEED.

This is how I act whenever I see a new doctor:

First of all, I dress to the nines. I treat it 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 comport themselves. And if you do NOT want to be labelled as having primary depression, dressing well and being well groomed is a must! An essential part of making the diagnosis of depression is how carefully groomed you are. If you are not well groomed, it may be assumed that you are not taking care of your appearance because of depression.

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, ALWAYS, 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 I have a file of 70 study abstracts on CFS, taken off Medline, that I always take as well. Once doctors see that you have searched and read the literature, they take you much more seriously. Those are available on my BBS, 213-766-1356.

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. (Sorry...that one's not online yet. You'll have to write to the CFIDS Association to get it.)

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 much I have looked for help with it.

The easiset 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). You will find that you will be carting these records to one doctor after another, and it saves a great deal of time and misunderstandings. 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.

Other useful tips:

- Take someone with you, preferably someone 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.

- 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 chart with metal tabs.

- 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.

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. Infectious disease specialists are another group that tend to be well informed about CFS.

If you are very clear about what you want, 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.

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!

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