By Lucy Dechéne, Ph.D.

The Massachusetts CFIDS/ME & FM Association Summer 2002 UPDATE

While reading medical journal articles for this UPDATE, I discovered the exciting news that Dr. Jim Jones of the National Jewish Medical and Research Center has deduced that ME/CFS is caused by an evil Dr. Svengali ⁽¹⁾. That's right! Dr. Jones's team has published a paper claiming that on the way to our doctors for the very first time with our ME/CFS symptoms (which were really innocuous), an evil Dr. Svengali ⁽²⁾ leaped out of the bushes and hypnotized us into thinking that we had a serious problem!

Well perhaps I am exaggerating  just a little. They didn't claim it was a real-life version of Dr. Svengali. Nor that it was the same person for every ME/CFS patient in the whole world.

But a real person hypnotized us. Or somehow we got hypnotized. Really! (Wait—but why did we think it necessary to go to the doctor in the first place with innocuous symptoms?...You are getting sleepy... Wipe that conditioned expression of disbelief off your face...This is peer-reviewed research! Paid for by the U.S. taxpayers even... You must believe!...You will believe!)

Suggestibility, the nocebo response and the misinformation effect as "causes" of  ME/CFS

This was a paper full of obfuscation, so maybe I got things a little bit wrong. However, they did say, "The purpose of this study is to examine the role of three related constructs and phenomena: suggestibility, the nocebo response, and the misinformation effect as potential explanatory mechanisms for symptom reporting in CFS." Unlike many medical researchers, this team was kind enough to define their terms.

"Suggestibility is defined as the tendency to respond to suggestions. Synonymous with hypnotizability in the literature, suggestibility is characterized by response to suggestions and by the perception that the response behavior is involuntary." (And you thought I was making up the hypnotizing part! They are very serious about this.)

As for "nocebo", they say, "The more specific term, nocebo response, refers to negative reactions to a placebo, such as onset of an illness after receiving an inert substance of intervention."  What "inert substances of intervention" we supposedly received isn't explained in the paper so I can understand it.

Perhaps they are referring to viruses as found in Dr. De Meirleir's study? The ones I entertain in my very popular Club Med for viruses might be "inert" (is RNA or DNA inert?). However, they are pretty tough characters. Also they are the ones who decided to intervene in my life. I didn't ask a doctor to give them to me. Also, most people wouldn't call viruses "placebos." So I don't quite understand this part of the paper.

Finally, they say, "research has shown that suggesting erroneous information subsequent to an event often results in erroneous reporting about that event. The research on this ‘misinformation effect' has indicated that the erroneous information is incorporated into the subject's memory of the event." (This is true and in the psychological literature.)

Later they say, "The misinformation effect may be similar to the placebo response, particularly with regard to physical health concerns. If an individual is predisposed to being concerned about physical status, s/he may be more susceptible to suggestions about physiological events, no matter how minor the event or inaccurate the suggestion."

(They don't explain who makes the inaccurate suggestions to the prospective ME/CFS patient in the first place. In my experience, lots of people have spent lots of time trying to convince me that I couldn't be experiencing what I really was experiencing. No one tried to convince me I was experiencing things that I actually wasn't (except doctors trying to convince me I must be experiencing psychological problems because they didn't understand my illness.))

Dr. Jones has tried to prove that ME/CFS patients are prone to the "misinformation effect." He studied 21 ME/CFS patients and 21 nurses and research staff at his hospital. He had the participants read a story and he tried to introduce some false information.

Some of the false information was medical and some wasn't. (He didn't explain the story in his paper.) Neither the patients nor the nurses were duped very much by the false information by claiming later that it was part of the original story.

But the few mistakes that were made by the patients had to do with the health information. The nurses and researchers weren't taken in. (Could their medical background have anything to do with it? No, of course not!) But he wasn't too happy with the results since they weren't statistically significant. So he wants to try again in another study.

In his opinion, he had more success with proving ME/CFS patients are hypnotizable. The undeniable proof was that the 21 ME/CFS patients could roll their eyes upward better than the nurses!

I am not surprised that ME/CFS patients can roll their eyes heavenward well. Think of all that practice we have, whenever we are in a situation where one rolls one's eyes to heaven and makes a comic face, or else cries.

Most ME/CFS patients I know have a wonderful sense of humor and roll their eyes frequently. In fact I did it numerous times while I read Dr. Jones' paper! (On the other hand I would expect nurses to have plenty of occasion to practice rolling their eyes. My sister who is an ICU nurse does it. But then she is related to me. Maybe it runs in our family.)

The researchers conclude, "To the extent that suggestibility and automatic processing characterize CFS, treatment of CFS symptoms may be enhanced by cognitive rehabilitation that includes practicing divided attention and focused attention tasks, cognitive reframing strategies (e.g., to suggest alternate, benign interpretations of somatic sensations...), and/or hypnosis, to refocus the patients' attention to the nonsomatic realm..." [My italics.]

So there you have it, folks. Run; don't walk, to the nearest hypnotist. Just be sure it isn't the evil hypnotist who convinced you that you had ME/CFS in the first place! (Dr. Jones never does quite explain how that happens.) Refocus your attention to the nonsomatic realm and you will be cured!

⁽¹⁾ DiClementi et al., "Information processing in chronic fatigue syndrome. A preliminary investigation of suggestibility"  J Psychosomatic Res 51 (5) (2001): 679-686.

⁽²⁾ Svengali was a fictional villain in the novel Trilby by du Maurier who hypnotizes the heroine constantly.

Lucy Dechéne, Ph.D. is professor of mathematics at Fitchburg State University. She was a co-investigator for the 10+ Long-term CFS Study and has published several CFS articles in peer-reviewed medical journals. She is a Board Member of the Massachusetts CFIDS/ME & FM Association. Dr. Dechéne is also an organist, carillonneur and composer. She has had ME/CFS since a bout with the 1957 Asian flu.