TO TABLE OF
March - April
CFIDS or MCS: Which do you have?
By Nanette Talbot
The Sept./Oct. 1998 Chronicle published commentary by Matthew Chute and a letter
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.
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 didnít 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 didnít 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 couldnít 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
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, "Grandmaís 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 Grandmaís
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 canít I think?" Forty years later, I remembered those words, "Why canít I think?"
and finally, I knew the answer.
I also remember Grandma clutching her arm, crying out in
pain, and then explaining, "Itís just the old rheumatiz, Nanette." Isnít 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
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
donít want to hold me up, so Iím 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
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, "Itís all in your head."
To be fair, many doctors I have seen do not suffer
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.