Chronic fatigue and immune dysfunction syndrome ( CFIDS) is a complex disease that involves many body systems. In their search for a cause and cure, researchers are examining how CFIDS affects the immune system, hormone systems and numerous other body processes.

Canadian researcher Ronald Schondorf, MD, PhD, and his team at McGill University in Montreal are focusing on whether CFIDS creates changes in the autonomic nervous system (ANS). The ANS controls involuntary body functions, including heart beat, digestion, gland secretions and sweating.

Dr. Schondorf is looking to answer three specific questions:

• Do people with CFIDS show widespread ANS dysfunction?
• Can a questionnaire be used to identify CFIDS patients who have ANS problems?
• Does ANS dysfunction occur whether or not a person is physically deconditioned?

The Chronicle asked Dr. Schondorf to explain his work, and what he hopes to find.

Q: What do we know about ANS dysfunction and CFIDS?

A: We have already shown that about 40 percent of people with the disease have orthostatic intolerance, a form of ANS dysfunction. They have trouble with dizziness, lightheadedness and other symptoms when they stand up. This is related to how fast the heart beats and changes in blood pressure. These changes may also occur after you eat or when you are hot.

What’s not really known is whether CFIDS affects other autonomic functions. Are these functions somehow altered in people with CFIDS ? That’s what we’re looking to document.

Q: How will you conduct your research?

A: Not everything can be studied easily. You can study the bladder or the gut, but the tests are very invasive. So we are studying sweating and cardiovascular changes while the subjects are standing. We can get at these more easily.

Some people with autonomic dysfunction sweat less in certain spots, and more in others. We already know that some people with CFIDS get drenching sweats, while others have no problem with this at all. Our study will help us discover how widespread the problem really is in people with CFIDS. It could also give us a hint about other autonomic problems. Maybe if one part of the system gets attacked, another part will be affected as well.

Q: How can this knowledge help patients?

A: It may give us insight into the underlying pathophysiology of the disease — that is, how CFIDS affects the normal working of the body. I would certainly not say that everything about CFIDS can be explained by changes in the autonomic nervous system. But perhaps studying the role of ANS dysfunction in CFIDS can help us identify groups of individuals for whom intervention can be made. In some cases, treatments for autonomic problems might help.

It also can help provide objective proof that something isn’t right with them. It could provide validation that they are sick, which is important to many patients.

Q: Are you talking about a clinical test for CFIDS?

A: A test could be a two-edged sword. On one hand, it provides insurance companies with some degree of comfort when paying claims. But if you don’t show these particular symptoms, the insurance company could use it against you. Even if a doctor with tremendous knowledge of CFIDS gives you a diagnosis of CFIDS, an insurance company could say, “Too bad, you don’t show anything on the test.”

Q: What about the questionnaire?

A: Many tests for CFIDS and autonomic disorders, like the tilt table test, are very expensive and very invasive. A questionnaire that screens people with CFIDS for autonomic problems could be a tremendous benefit to the patient.

If you actually come up with a validated questionnaire, then doctors could screen you in the office. They could stratify patients and decide where more testing needs to be done. Physicians could avoid giving unnecessary tests. Nobody likes standing and being tested for 45 minutes. Many people have to travel great distances to get testing. They have to pay out of pocket. Maybe we could help avoid some of that.

A questionnaire has been developed by the Mayo Clinic to see if people in the general population have obvious autonomic disorders. Perhaps this is something we can use, or modify, to identify people with CFIDS who have more subtle autonomic disorders.

But this may prove very difficult. Many people with CFIDS have a lot of symptoms that are difficult to explain. Often they are much more disabled or attach a lot more meaning to certain symptoms than other people. We’ll have to see how it goes.

Q: Can you explain your third goal, to uncover what role deconditioning might play?

A: Some people may show abnormalities in the autonomic system simply because they’re deconditioned. If you’ve had the flu for a few days and have been lying down most of that time, you may feel quite dizzy when you stand up. That’s a very mild form of deconditioning; you have been inactive and are not used to standing up.

We hope to see how much of a role —if any — inactivity plays in CFIDS cases. We expect that ANS dysfunction will be independent of how much activity a CFIDS patient gets.

This whole area can be controversial. There’s a political twist. It could be that autonomic dysfunction is a genuine problem related to CFIDS. Or maybe not — in which case some people will say that people with CFIDS are bringing this on themselves by becoming deconditioned. My argument is that the data are the data, and we’ll have to see what it shows. We need to find out.

Editor’s Note: Dr. Schondorf’s research is being funded by a grant from The CFIDS Association of America.