This page comes from a post that Christa made to the CFS-20s mailing list. I have edited it slightly, and it's used with permission.
As far as doctor's visits are concerned, you have to really know what you're walking into. They want to diagnose, prescribe and cure. It's not possible for this disease and many can't handle that. I describe walking into a new doctor's office as bringing the space shuttle into a gas station - you can not launch a myriad of symptoms and complaints in hopes they will extract one detail and discover you have a rare form of something that is curable. (We've all done it!!)
Before you go, make some notes and type them. Basic history of your health (previous conditions, duration) and your parents/sibling/grandparents basic facts. Present the CFS info with time of onset and symptoms. Since it changes all the time, make a short list of the ones that come and go, and note anything you suspect may trigger them. Finally, list your major concerns (chest pain, fatigue, headaches, etc.) because these are the symptoms that are disabling you. At the bottom, give your date of birth, medicines taken and any other pertinent information.
When you go in, expect that they are looking for an simple answer. Expect the questions about your home life, recent problems, do you feel anxious, etc... You need to present yourself as a capable, intelligent person who is ill and very interested in feeling better. You have to explain that fatigue is not a sufficient word for the lows that happen. You need to describe what happens in terms of activities you can not do and why.
You also need the doctor to understand that you are not having a difficult time with your schoolwork and feeling tired and overwhelmed because of that - you'll know by their reaction if you are getting through. Body language, and what sort of questions they ask tell you where they are looking at this from. Have any blood-work results or other tests copied and available to give them. If appropriate describe some treatments you've tried and their success or lack of success.
If they do not deal with CFS, reconsider going in the first place. You can call any doctor's office and find out if they are familiar with it and treat it. Remember above all that you (or an insurance company) are paying that individual for services. If they are not up to the job, go somewhere else. Spending time energy and money at an office that sends you away with suggestions of relaxation and a feeling that the doctor just didn't get it is demoralizing and disheartening. This disease has already done quite a bit of that. The person you go to needs to A) Really listen and take notes B) Ask questions because you will forget things and may not think something is important C) Literally tell you that they are concerned about your level of disability and illness and realize CFS is a real problem D) Based on your symptoms, start talking about possible treatments.
Remember that this person's job is to help you. If you don't feel they can help, don't go back. If you think they may be able to help, then work as a team. For example bring your doctor articles about CFS and examples of treatments you think may help you. You can not expect anyone to take blood and come up with a cure. Most of the CFS recovery is up to you. I'm not talking about being a model prisoner and winning the battle. I'm talking about doing research and work on your own to learn what can help you. You are one patient of many and it is your health, not theirs. Don't bring your doctor articles on way out treatments or miracle cases or stories describing the trauma. Bring them possible solutions and new information about the disease. Highlight the parts that matter; they don't have time to read pages of material.
Finally, give them feedback. Call after a week of a new treatment and let them know what is happening and what you think. Secondly, and this is extremely important, ask what the next step is. Since this is complicated and usually not a fatal disease, you may not be their top priority. Without being pushy, ask what steps you can try next if the current treatment doesn't help. Get answers, get time-lines. Then, if the regimen isn't helping you can call back and say "I took xyz for two weeks and my headaches didn't improve. I'd like to have that MRI we talked about." Schedule your next appointment with the doc or wherever the test is.
Bottom line: You must put effort into making yourself look halfway decent when you go in and presenting your case in clear, accurate terms. You need to know what they've done for people in the past and what they think may apply to you. How you handle a doctor has everything to do with how they handle your case and, subsequently, how your health issues are addressed. Exploding in a doctor's office or acting hostile because you have been treated poorly before is not an option. That behavior will get you anti-depressant meds and a quick usher out the door. I know... What we want to do is say "listen you jerk, I can hardly make it to the kitchen sometimes, I hurt like hell and I can't sleep to get away. Help me!!!" You must present as a good person, to which something bad has happened. You must be part of the duo that tries to heal you.
And above all, you must never, ever give up. People do get better. Treatments do work that can make you feel like a person again, even return you to a good portion of the "old life." It's really up to you to make it happen.
