By Camilla Cracchiolo, RNHaving 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 conditionis poorly understood and hotly debated even among doctors. Infact, 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'tenough 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 28222-0398They have a toll free line (800) 442-3437, with basic recorded info,and an excellent 900 number with more recorded info on differenttopics at (900) 896-2343.There are also many electronic resources available for the dedicatedmodem 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.TXTI also have a draft FAQ that contains this information, that you canget by sending a request (internet only) to camilla@primenet.com

Next, you need to get a hold of some medical resource books. Youwill need these not only to better understand CFS, but also becausewe 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 toall different kinds of medical conditions, although it is terriblyinadequate on CFS. I recommend it because people with CFS frequentlydevelop many secondary medical problems, such as problems with theirurinary tract, irritable bowel syndrome, vision difficulty, a wide variety of neurologic problems, etc. The Merck Manual is like amini medical textbook.Cost: About $30 new, older editions are often available in secondhand bookstores. Buy it new if you can afford it.2. A good medical dictionary. I recommend Taber's CyclopedicMedical Dictionary, although there are many other good ones outthere. You are going to need this to understand what the MerckManual 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 hadrecommended to me by physicians over and over again is Goodman's andGilman's _The Pharmacologic Basis of Theraputics_ and the AMA DrugEvaluations. Get new editions if you can possibly afford it.Of these two books, most people with CFS will probably prefer The AMA DrugEvaluations. This book lists more practical concerns, like how often aparticular side effect occurs. Many physicians prefer the AMA DrugEvaluations for this reason and if you can only afford one of the abovebooks, get this.Goodman's and Gilman's is good for very detailed information. If you want toknow everything there is to know about the drug you've just been prescribed,(especially the chemistry and how it's metabolized) this is the bookfor you.Cost: Goodman and Gilman's runs about $100. The AMA DrugEvaluations 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 andmost 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 use dedition 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 22161I 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 doctorand place all their problems in his or her hands. We all want tosay: "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 realmedical 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 weregoing to a job interview. It's unfortunate, but doctors, like otherfolks, 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 businessmeeting.

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 tryanti-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) fromcamilla@primenet.com.Third: Take your medical records with you. I've found that simplyshowing 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 alreadyseen 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 Publications2000 P Street NWSuite 600Washington, D.C. 20036

If you're like most people with CFS, your medical records arequite 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 beapplicable 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 inthe 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 bewell 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 particulardoc that you want to see. And don't hesitate to ask the nurses whothey recommend. I finally found the one doctor in all of Los Angeles Kaiser who specializes in CFS by asking a nurse friend whoworks there to do a little digging for me.Finally, realize that you may have to go outside the HMO to get whatyou need and fight with them later about making them pay for it.Learn your rights inside the organization. Most people don'trealize that many HMOs let you change your primary physician simply bycalling the membership services dept and requesting a new one.Maybe you're going to have to go through the entire family practicedept before you get a doctor you like. So what? The most importantthing is: don't give up!Copyright 1995 by Camilla Cracchiolo. May be freely reproduced fornon-profit purposes *only*, if the article is reproduced in itsentirety, credit is given and this notice remains attached.