- Last Updated: 30 November 2015 30 November 2015
Training your doctor
Unfortunately, at this time, it is still rare that a patient can walk into any doctor's office and expect the doctor to know what to do. Treatment is still trial and error; but for those physicians in the know, there are many more tricks in the hat to try than a few years ago. Many inroads have been made in the medical community after years of advocacy and private research funding.
The government is starting to let some money flow into researchers' pockets. It often takes many years for a new disease to get through the pipeline from acknowledgment, research, and a welter of medical publications to the level of clinical acceptance. Look at the time it took before the cause' of most ulcers was pinpointed to be the H. Pylori bacterium. H. Pylori was discovered over 20 years ago, while ulcer patients were told their symptoms were caused by stress!
One big pitfall to look out for is the doctor who doesn't have a clue about ongoing ME/CFS research, and approaches ME/CFS like ulcers, i.e., "This is all in your mind; go see a psychiatrist." Many internists, and even specialists, feel comfortable making a psychiatric diagnosis with which they have little, if any, experience on the subject. How many psychiatrists would presume to diagnose a physical medical condition? (Kind of a one-way street, it seems).
Also, don't buy into the hype that you are just doctor-searching to hear what you want. We all know there are a few—very few—people out there like that.
But, if you are genuinely ill and get nowhere with the doctor you are seeing, go to the next. Whether you pay their bill directly or indirectly, doctors are our employees. Except, perhaps, in the case of HMOs— which may essentially own the doctors. It has now been proven by studies, and interviews with doctors who have left HMOs, that they were not allowed to give all options to their patients, or even worse, not able to order needed tests.
Since ME/CFS diagnosis is still based only on a research definition from the government, with no single sure-fire test, everything related to ME/CFS can be labeled experimental and unnecessary. Hence you may need to fight the system and demand the care you need.
Doctors who are clued in often can show definitive abnormalities on certain tests. There is something wrong in a ME/CFS body. It just doesn't say ME/CFS yet. Science only proves what already exists. It just takes too long sometimes.
At times, it may feel like you are being pulled through a tunnel with the hope of finding the light at the end—only to get there and find another tunnel. You ask yourself, "How many tunnels can I go through and still survive?" Know you are not alone, and eventually a light will glimmer.
The good news is that as you process information and begin to make connections the dots in this puzzle start forming a picture. You won't feel so fragmented. With education and knowledge comes power. You are in a better position to make educated and informed decisions about your own health care, working in a partnership with your doctor.