“Dear Dr Collinge: I’ve seen two different reports recently. One says many patients recover in their sixth year of illness with CFIDS. Then I saw a press release that said patients were less likely to recover after having CFIDS for more than five years, and I’m confused and dismayed. I don’t know what to believe. ” -Carolyn
I received this question recently from a woman who has had CFIDS for five years. It illustrates a problem that I think is growing in the CFIDS community, so I would like to address it as follows.
Throughout the first several years of awareness of CFIDS in America, it was with no known cause, no known cure, and no known rates of incidence, prevalence or recovery. We are still pretty much in the dark as to causation and treatment, but several studies have been conducted or are under way to attempt to tell us how widespread the illness is and what course it takes. Of particular interest to individual patients are studies which present statistics about recovery rates, the likelihood of recovery, who is most likely to recover, who is least likely, etc.
The Numbers Game
While these statistics may contribute something to describing the “big picture” for purposes of political advocacy, seeking research funding and public education, they can also be used in a genuinely harmful way. The problem is that such studies are describing broad, general trends in large numbers of people. They should not be used as guidelines to set your own expectations or beliefs about what is going to happen to you personally.
Now I know that some people will say, “but those statistics are giving me a realistic perspective on what I’m up against.” This is a good point. However, the problem comes when you take those studies as the final authority, dictating what is actually going to happen to you.
The studies that are currently available generally do not take into account critical individual differences in behavior, attitude, social support, life style change, self-help practices, nutritional changes and countless other variables that actually influence what happens in the individual case.
Unfortunately, upon seeing these statistics, some people take an attitude of resignation, as if to say, “Oh, I fit into such and such a category according to this study, so now I know what is going to happen to me, and there’s nothing I can do about it. According to the study, my fate is sealed.”
The truth is that people have recovered from CFIDS who, if you take the studies literally, had no business doing so. The same of course is true for cancer, where countless people have recovered from supposedly terminal metastatic disease.
Last February I spoke at the international symposium on ME (CFIDS) in New Zealand. There were patients and health care providers there from several countries. At one point I asked the audience, “How many of you consider yourselves recovered?” Many people stood up. I then asked them to state how long they had been ill before their recovery. Answers ranged from three to fifteen years and more. I then asked them to rate their level of daily functioning when they had been at their sickest. The responses ranged from zero to 20%.
This was obviously not a scientific study. However, it confirmed to me that healing is a realistic possibility regardless of how sick you are and how long you have been sick.
I believe it is vital that people accept this fact. Otherwise, they may take a fatalistic attitude, and abandon their efforts at healing, or go about it only halfheartedly. Whether you believe it or not, the fact is you have the healing mechanisms in you body to influence your recovery. There is no such thing as false hope. However, there is such a thing as false despair.
There are two kinds of denial that I have seen in working with people with this illness. The first is denial of truth of the illness- that it demands your undivided attention. You have to take the messages of the body seriously, and give it the rest, healing time, internal cleansing and support it needs.
The second kind of denial is denying that you can influence the course of your illness by your own efforts. Here is where you’ll get no support from statistics (at least those curently available- we’re working on it). You must accept the fact that there is a great deal you cm do to promote your healing. Too many others who have been through your situation have proven this to be the case.
Another kind of Research
In my opinion the kind of research that would be most meaningful in CFIDS is not being done. Currently the finds are mostly going into bugs and drugs. What would really have practical value for the greatest number of sufferers is a study of the behavioral epidemiology of recovery. What do the people who recover have in common? How did they do it? What can we learn from them? Yet the research community seems to be actually disinterested in people who have recovered. They’re weird, and we can’t learn anything from them. Does this make sense to you?
In his new book Spontaneous Healing, which I highly recommend, Andrew Weil, M.D., proposes that we should have a Healing Registry, just like we have a Tumor Registry. The Healing Registry would be a resource for learning how people recovered from chronic or life-threatening illnesses. Certainly CFIDS should be included. There is a lot we can learn from these people.
My recommendation to Carolyn and all others who are preoccupied with reading their future in statistics, is that you may want to try tea leaves or palms as well. You may actually enjoy them more, and there’s not all that boring reading involved. The statistics are not going to tell you the truth about you. Turn your energy inward rather than outward. Do what you can to support yourself in this moment. Don’t postpone. You may just be postponing the healing you seek.
Editor’s Note. Dr. Collinge is a researcher and writer in the field of behavioral medicine, living in Sebastopol, C.A. He began working with CFS during the Lake Tahoe epidemic in the 1980s. His book, Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment (Putnam, 1993) and an accompanying set of tapes, The Home Self Empowerment Program are available from the CFIDS Health Buyer’s Club.