Commentary

CFIDS or MCS:  Which do you have?
By Nanette Talbot

The Sept./Oct. 1998 Chronicle published commentary by Matthew Chute and a letter from Linda Del Favero concerning the link between chemical exposure and CFIDS. Both feel that we should be looking at chemical, rather than biological agents as the cause of CFIDS. I read their opinions with great interest, since I have seen this issue from both sides of the fence. I strongly believe that multiple chemical sensitivity (MCS) and CFIDS are two separate entities.
 
Many people have stated they developed CFIDS following a chemical exposure, but just as many PWCs site a virus or other bodily stress as the trigger. No one, as yet, knows what causes CFIDS. The words trigger and cause are not synonymous, yet many people seem to confuse the two. Chemical exposures definitely trigger CFIDS symptoms in many, but this does not mean that chemicals are the direct cause, as they are in MCS.
 
In 1980, I was diagnosed with MCS by an allergist/clinical ecologist. Ridding my environment of perfumes and chemical cleaners as well as tracking down food allergies did improve my symptoms at first. Still, I always had the sense there was something more going on, especially as my symptoms of weakness and fatigue continued to escalate and I started to develop neurocognitive problems.

Advice didn’t fit 
The clinical ecologist assured me that people with MCS are able to exercise, and that I should continue walking. I had always enjoyed hiking, but by this time, simply walking on flat ground was a challenge. My walks grew progressively shorter and more tortuous, as I struggled from the effort of slogging through air that felt like concrete.
 
After fruitless appointments with doctor after doctor, I spent many hours in the library, trying to find a disease that fit my numerous and strange symptoms. I had heard of chronic fatigue syndrome, but didn’t bother reading about it, having many symptoms worse than fatigue.
 
More than a decade passed before I read a pamphlet about CFIDS that listed chemical sensitivity as one of many symptoms. I was simply lucky enough to find the pamphlet in my grocery bag following a trip to a health food store. I asked myself, "Could the MCS diagnosis have been wrong? And if so, why was this other condition given the ridiculous name, chronic fatigue syndrome?" I might have been spared many years of living in limbo with an unknown disease had the name more accurately reflected the state of my health.
 
I feel I am more qualified than many laymen to compare MCS with CFIDS, having been diagnosed with both diseases. I started contacting people with MCS over 18 years ago, reading as much literature on the subject as I could absorb. Since my CFIDS/fibromyalgia diagnosis, I have gone through a similar process of educating myself and networking with other PWCs through The CFIDS Association and our local CFIDS/FM support group.

I have observed that although people with MCS often have numerous symptoms identical to CFIDS, many have abundant energy. One friend, in particular, told me she knew she couldn’t have CFIDS, since she could spend hours scrubbing and cleaning her home. She does, however, have many other terrible symptoms associated with MCS. I have also spoken with others who work tirelessly, jog several miles a day, and engage in other activities that most PWCs cannot. Years ago, I read that some even use a combination of sauna and exercise to rid their bodies of toxins. How many PWCs could tolerate that?

A genetic connection 
Then there is the controversy surrounding genetics and germs. I am certain that my maternal grandmother suffered from CFIDS and/or fibromyalgia. From the time I was five years old, I remember her constant lament, "Grandma’s getting old." Recently, I did the math and realized that she was only 53 years old at the time. After my CFIDS diagnosis, I remembered Grandma’s symptoms and understood why she felt so old. I vividly remember how often she would pause, standing in the middle of a room, trying to remember what she was about to say or do. She would become frustrated and angry, asking, "Why can’t I think?" Forty years later, I remembered those words, "Why can’t I think?" and finally, I knew the answer.
 
I also remember Grandma clutching her arm, crying out in pain, and then explaining, "It’s just the old rheumatiz, Nanette." Isn’t it true that many people who were diagnosed with rheumatism in years past would now more likely be diagnosed with fibromyalgia?

And an infectious source 
A letter that my grandmother wrote approximately 15 years ago is also quite revealing. During my search for a diagnosis, I had wondered about a genetic link, so I asked Grandma to write about her health problems. She divulged that she had been chronically ill since her 30s. After a near deadly encounter with a staph infection, followed by scarlet fever and then severe shingles, she was left with a number of chronic symptoms. At a research hospital, she was diagnosed with neurocirculatory asthenia, one of the many archaic names for CFIDS. She also wrote, "8:30 pm--About ready for bed, but will write a few more lines. I really go to bed too early--not sleepy but tired. My legs don’t want to hold me up, so I’m better off to be lying down." I knew nothing of CFIDS at that time, but I saved the letter. More than a decade later, her words took on new meaning.
 
I believe that the combination of staph, scarlet fever and shingles were the triggers that caused her to become vulnerable to the unknown agent that causes CFIDS. Considering the germ warfare her system had battled, I cannot believe that her illness had anything to do with chemical exposure. Furthermore, in 1935, manmade chemicals were not nearly as pervasive as today.
 
Certainly, checking for food allergies and chemical sensitivities may be very helpful, yet I continue to doubt that chemical exposure is the cause of CFIDS. To the contrary, I believe that researchers will home in on a virus or some other biological agent, likely combined with a genetic defect capable of first weakening and then propelling the immune system into an overactive frenzy.
 
Some with MCS or fibromyalgia have actually become angry or ridiculed me for simply broaching the subject of a possible viral link. I can understand this, since patients often hold onto whatever theory their particular doctor embraces. I agree with Mr. Chute that our diagnoses seem to depend on what type of doctor we see. When I went to the clinical ecologist, my symptoms were blamed totally upon chemicals. When I went to a doctor who embraces hypoglycemia, all of my symptoms were blamed upon that culprit, and I spent months pricking my finger and checking blood sugar levels, only to discover that there was no connection. A lupus specialist naturally suspected lupus. Then there was the psychiatrist who verbally abused me to the point that I temporarily lost all sense of self-worth and started to believe that my symptoms might be psychological after all. These feelings were reinforced by several other doctors who also hid behind that old saw, "It’s all in your head."

Confusing diagnoses 
To be fair, many doctors I have seen do not suffer from myopic vision and remain supportive and open-minded. Unfortunately, other physicians merely added to my confusion. For instance, two rheumatologists diagnosed fibromyalgia solely, informing me that I merely needed to improve my sleep and exercise. When I mentioned that my newest symptoms of pain, weakness and loss of balance appeared virtually overnight, far too quickly to be caused by deconditioning, my observation was totally ignored. Instead, I was advised to go on a diet and get some exercise. No wonder we become confused, with all this conflicting advice.
 
Until the day arrives when a single medical test can accurately differentiate between CFIDS, fibromyalgia and MCS, I believe it is crucial for us to do our homework, keeping our minds open to all possibilities. Summon your inner strength and then delve into as much literature and research as possible. If you are too ill to play Sherlock Holmes, then at least try to find an open-minded physician who will listen to you without prejudging. Only a complete examination, exhaustive questioning plus thorough testing can confirm any diagnosis, especially for conditions as complex as these, so it is best for patients to remain open-minded, too, in the search for a proper diagnosis. Seek out physicians who have expert knowledge about CFIDS, fibromyalgia and MCS. Unfortunately, they are few and far between, but if you doubt your present diagnosis, a trip to an open-minded specialist may prove worthwhile.

Nanette Talbot lives in Fulton, Ill.