Cause of ME/CFS: Now It's a Bogeyman Instead of Dr. Svengali!

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Last Updated: 21 November 2015 21 November 2015

By Lucy Dechéne, Ph.D.

The Massachusetts CFIDS/ME & FM Winter 2003 UPDATE

In the Summer UPDATE I explained how Dr. Jim Jones was sure that an evil Dr. Svengali had hypnotized each of us into believing that we had ME/CFS. A sure sign, according to him, was that we could roll our eyes heavenward well. As you could tell from my article, I wasn't too convinced.

Well, now we have another entertaining hypothesis. (When you have ME/CFS, you have to find humor wherever you can—even medical journals.)

A recent article by Dr. Ashok Gupta ⁽¹⁾ starts off modestly enough, "Here, a novel hypothesis for chronic fatigue syndrome (CFS) is proposed."  It is certainly novel (although it is loosely related to Dr. Goldstein's limbic hypothesis, which I find believable.)

I will characterize this new hypothesis as the "Bogeyman Hypothesis."  I will give Dr. Gupta credit—he only claims his hypothesis for a "subset" of ME/CFS patients instead of all of us.

I personally suspect his "subset" is what we mathematicians call the "null set" or "empty set." As a Ph.D. student I was told horror stories of Ph.D. candidates in mathematics who went to the defense of their dissertation, where an astute questioner pointed out to them that what they had studied so long was actually a cleverly disguised version of the null set. (Goodbye to your Ph.D.!) (Maybe this will be supposed by Dr. Gupta to be my bogeyman, but I got ME/CFS 21 years before I defended a Ph.D.  In fact I had barely started first grade.) 

Apparently M.D.s aren't subjected to such horror stories. Or at least not M.D.s studying ME/CFS. There is no limit on creativity or credibility for people studying the "psychological" origins of ME/CFS, it seems. The more weird the psychological explanation, the better! If they really don't fit anyone—well, who is to know? How can you disprove "subconscious" explanations?

So what is the "Bogeyman Hypothesis"? Dr. Gupta describes it as, "During a ‘traumatic' neurological event often involving acute psychological stress combined with viral infection or other chemical or physiological stressor, a conditioned network or ‘cell assembly' may be created in amygdala." (The amygdala is the portion of the brain that controls arousal due to emotion, especially fear.)

He continues, "The unconscious amygdala may become conditioned to be chronically sensitized to negative symptoms arising from the body. Negative signals from the viscera or physiological, chemical and dietary stressors, become conditioned stimuli and the conditioned response is a chronic sympathetic outpouring from the amygdala via various pathways including the hypothalamus.

"This cell assembly then produces the CFS vicious circle, where an unconscious negative reaction to symptoms causes immune reactivation/dysfunction, chronic sympathetic stimulation, leading to sympathetic dysfunction, mental and physical exhaustion, and a host of other distressing symptoms and secondary complications. And these are exactly the symptoms that the amygdala and associated limbic structures are trained to monitor and respond to, perpetuating a vicious circle. Recovery from CFS may involve projections from the medial prefrontal cortex to the amygdala, to control the amygdala's expressions." 

Loosely translated, Dr. Gupta said that we had an unconscious "gut" fear reaction to something at the time of a viral infection and that gave us ME/CFS through "fear conditioning." That is, we saw an imaginary "bogeyman" of sorts during a viral illness and the rest is history. At least he credits us with not consciously deciding for all the horror of ME/CFS to happen.

So, how do we recover? Dr. Gupta recognizes that recovery is not easy, but does suggest that sophisticated psychological approaches are needed.

He explains,  "Recovery is likely to involve two distinct processes. First, symptoms resulting from secondary illnesses such as digestive problems need to be addressed initially. Once symptoms have moderated, further recovery may involve the amygdala's expression of danger being regulated by the cortex, in a process called ‘extinction.' It may be particularly difficult to regulate ingrained fear of stimuli which are continually present (i.e., the symptoms of CFS) and patients cannot simply be told to try and not think about or worry about symptoms at a cognitive level, because the cortex is continually arrested and fear processing mainly occurs unconsciously. New therapies may be required which may be distinct to received wisdom in this area and further research is required to test the validity of new therapies resulting from this hypothesis."

So it sounds like he is discounting Cognitive Behavioral Therapy and almost hinting we need a good Dr. Svengali to hypnotize us out of our problems. It is fortunate that Dr. Jones discovered we roll our eyes heavenward well!

Now if we could only find that good anti-ME/CFS hypnotist to banish all traces of the bogeyman (says Dr. Gupta) and those false illness beliefs implanted by physicians into us (says Dr. Jones)!

We'll all be cured forever—or at least until the next bogeyman comes by when we have a virus.

^1. Gupta, "Unconscious amygdalar fear conditioning in a subset of chronic fatigue syndrome patients," Med Hypotheses 59(6) (2002): 727-735.

Breaking News: ME/CFS Caused by Evil Dr. Svengali!

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Last Updated: 21 November 2015 21 November 2015

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.

CFIDS and Multiple Chemical Sensitivity (MCS ): What's The Connection?

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Last Updated: 15 November 2015 15 November 2015

by Sharon Wachsler

In this 2009 article, Sharon Wachsler discusses the relationship between ME/CFS and MCS. The More resources section has been updated in 2015.

What's the connection between CFIDS and MCS?

There is a great overlap between the Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFIDS/ME) and Multiple Chemical Sensitivty (MCS). Although it is possible to have MCS without hav­ing CFIDS/ME, most people that I know with MCS have also been diagnosed with CFIDS/ME. Likewise, studies of people with CFIDS indicate that from one-quarter to three-quarters meet the diag­nosis for MCS.                .

A significant difference between CFIDS/ME and MCS is that whereas alleviation of CFIDS/ME symp­toms is often difficult or impossible, alleviation of MCS symptoms—in the form of avoidance of chemical exposures—almost always provides some relief. People with MCS who remove allergens and chemical triggers usually experience a great reduc­tion of their symptoms and may even slow or stop the progress of the disease. Many people who start out with mild MCS become more severely ill as they are exposed to more and more chemicals. An individual with CFIDS/ME who suspects s/he may also have MCS and takes steps to remove and avoid triggers, may help prevent future debilitation.

What are the signs and symptoms of MCS?

The symptoms of MCS are remarkably similar to those of CFIDS/ME. They include rashes and skin irri­tation; burning, watering, dry or itchy eyes; earaches or ringing in the ears; sore throat; headaches; runny nose or congestion; muscle pain and/or weakness; pain and tingling in the extremities (hands and feet); gastro-intestinal problems (stom­ach ache, gas, diarrhea); nausea, dizziness; fatigue; brain "fog"; lack of coordination; difficulty con­centrating; anxiety or mood swings; vomiting; fainting; seizures; and many other symptoms.

Because of the great range of MCS symptoms and their similarity to CFIDS/ME symptoms, other in­dicators are usually necessary to suggest MCS.

Here are some additional indicators that might suggest a PWC has MCS:

• Gradual onset of illness (as opposed to acute on­set)— the patient got sick over a period of weeks, months or years.
• Onset of illness triggered by an accident or chemical exposure. Examples are a medical procedure, especially if it involved getting general anes­thesia or injection of dyes, or other exposure to chemicals; a new house, a new school or work­place, and/or new carpeting, furniture, or heating system; use of, or proximity to, paints, pesticides, industrial cleaners or solvents, adhesives, or other construction materials; exposure to polluted water or air (whether acute or long-term).
• Any known or suspected food allergies, inhalant allergies (such as dust, pollen, mold, animal dander, etc.), or chemical sensitivities (such as per­fume or tobacco).
• A worsening of symptoms over time (both in number and severity).
• Sudden onset or cessation of symptoms without apparent cause or explanation. Examples: someone comes to visit and you realize that you've devel­oped a headache and sore throat that you didn't have before; or you walk into the kitchen and sud­denly you have a horrible "brain fog", or you go outside and after a half hour you feel better (or worse) than you have all day.
• Sensitivity (bad reactions) to medications.

Note: Because a person with CFIDS fits more than one of these categories, it does not mean that s/he necessarily has MCS—many of these can be true for people who just have CFIDS—but it may suggest that a PWC would want to at least have MCS ruled out.

Doesn't a person always know if s/he has MCS?

Sometimes yes, and sometimes no. In fact, I re­cently spoke with a woman who did not have any fatigue, but who was experiencing many CFIDS-­like symptoms (including headaches, nausea, dizzi­ness, sore throat, and pain and numbness in her extremities). She and her doctor were baffled.

Af­ter speaking with her, I suggested that she might have MCS and that she consult a clinical ecologist and the Massachusetts Association for the Chemically Injured. The reason that it is not always obvious that one has MCS is that if a person is reacting to everything around him/her, s/he feels sick all time and might not make the connection to specific exposures. Also, because some reactions to an exposure can be delayed—by hours or even days—it can be difficult to pinpoint the trigger.

Additionally, because MCS is not a well-known or respected diagnosis among the medical community ⁽¹⁾, most people do not know what MCS is or what to look for. Finally, the issue of denial can play a role. For instance, long before I realized that I had MCS, I had hints that I was bothered by chemicals (such as perfume). I chose to ignore these signs because the idea of MCS—with its additional bur­dens—was too fearful for me to face.

Note:

(1) MCS is even less accepted than CFIDS/ME. Most doctors treat MCS as a hoax or a psychiatric disorder. Even allergists, who may be helpful in identifying some allergens and triggers, are usually not knowledgeable of or interested (in fact may be hostile to the concept of) MCS. 

What can I do if I suspect I have chemical sensitivities?

1. You can consult with a clinical ecologist—a doctor who specializes in "environmental medi­cine." (See the resource list at the end of this arti­cle). Or if you can't pay for the doctor, you can self-diagnose by keeping a diary that lists all your activities and symptoms. After a while, a pattern often emerges.
2. Throw out or remove everything that you know or suspect makes you sick. This includes any scented products (perfumes, hairspray, scented shampoos and soaps), cleaners (floor wax, furni­ture polish, scented laundry detergent), paints and petrochemicals, etc^.(2) The best first step, especially if you live with other people, is to make a stripped-­down "safe-room" out of the bedroom, where no toxins are allowed. Usually, as the triggers are re­moved, MCS sufferers experience a gradual (or sometimes dramatic) reduction in their symptoms.
3. Contact a MCS Organization that can provide you with more information and support. (See en­closed resource list at end of article).

Note:

(2) Many people with MCS react to natural gas. If one suspects MCS, s/he might want to have the gas stove and/or furnace shut off for a few days to see if her/his symptoms change.

More resources  

American Academy of Environmental Medicine
Phone: (316) 684-5500
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

https://www.aaemonline.org/ A physician's organization—you can search for members who practice environmental medicine in your area.

Chemical Injury Information Network

http://www.ciin.org/ Provides information and referral to members; publishes a monthly newsletter. Maintains a library on chemical injury.

Human Ecology Action League, Inc.
PO Box 49126
Atlanta, GA 30359

http://ehnca.org/heal-human-ecology-action-league-inc/ Information clearinghouse with chapters and support groups around the country.

Massachusetts Association for the Chemically Injured (MACI)
PO Box 754
Andover, MA 01810-0745
(978) 681-5117
Fax (978) 686 0745
This email address is being protected from spambots. You need JavaScript enabled to view it.

http://www.maci-mcs.org/ Information, referral and support for people with MCS. Also holds monthly meetings and publishes a newslet­ter.

Multiple Chemical Sensitivities Referrals and Resources—an organization with a wealth of resources for patients and health care providers.

National Center for Environmental Health Strategies

http://www.ncehs.org/ Focuses on initiating change and empowering the public with hard data, such as medical, legal, and policy in­formation. Provides information on gaining accommo­dations at work and school. 

Disability Resources

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Last Updated: 08 November 2015 08 November 2015

General disability resources

State and Local Disability Commissions—These agencies assist disabled persons with a variety of resources and programs.

Many cities and towns have disability commissions, social service departments, or civil rights commissions that can assist you. To find out about this type of assistance in your community, call your city or town hall.

Massachusetts disability resources and agencies

The Massachusetts Association for the Chemically Injured is a non-profit statewide support, education, and referral organization for people with multiple chemical sensitivities and those concerned about chemical injury. For more information, contact MAC at P.O. Box 1171, Concord, MA 01742 or 508-681-5517.

The Arthritis Association, Massachusetts Chapter provides information, referral, support groups, counseling, education, and exercise programs to people with fibromyalgia (FM). Contact the Arthritis Foundation at 29 Crafts St., Newton, MA 02158; 617-244-1800 or 800-766-9449.

The Massachusetts Office on Disability— Tel 1-800-322-2020. This agency can provide information, referral and advocacy for a wide variety of issues and problems facing disabled individuals. The Office provides direct advocacy for individuals who are having problems obtaining services from the Massachusetts Rehabilitation Commission, or who are suffering various forms of job discrimination. Information, referral and advice are provided for many other problems, including housing, medical assistance, transportation, independent living, and other needed services.

Massachusetts Rehabilitation Commission— Tel 617-727-2183. The major function of the Commission is to provide vocational rehabilitation services to the disabled. If you are determined to be disabled by the Commission, you may receive extensive training, education, rehabilitation and support services for future employment more compatible with your disability. (You can receive assistance from the Commission if you are collecting Social Security benefits or if you are disabled and not receiving such benefits.)

The Commission also offers homemakers/chore services to assist the disabled (see above section).

The United Way's First Call for Help Information and Referral Services—Check your local directory for the phone number, as it varies by region. First Call for Help is a comprehensive referral service for those in need in a crisis which can help you find assistance for a broad range of problems, particularly in the following areas:

1. Housing: crisis assistance for mortgage, rent and utilities emergency and transitional shelter, legal help with eviction
2. Assistance in finding health care
3. Assistance in obtaining emergency food and health care
4. Counseling: referrals for emotional and family problems.

The Disability Law Center—Tel 617-723-8455. The Disability Law Center in Massachusetts is a statewide legal advocacy, information and referral agency for individuals with disabilities. The center does not usually provide individual legal representation, but it can assist in providing attorney referrals.

Disability lawyers at the Center can answer by phone more difficult technical and legal questions concerning many aspects of the Social Security Disability programs. If you have been denied unemployment compensation because you cannot work full-time and can only work part-time due to your disability, the Center may be able to assist you obtain benefits. Also if you cannot continue to do your present job due to your level of disability but could still function within your company at reduced hours or in another capacity, the Center can advise you as to your legal right to job accommodation.

Health Care for All, Boston, Massachusetts—Tel 617-350-7279. Assists individuals without health insurance to learn about various insurance options and how to go about obtaining insurance.