Eyes of M.E.
By Gail Kansky
It is not difficult to find information about eye abnormalities in ME/CFIDS but
it is nearly impossible to find good information from medical journals about it.
That is because the eyes are affected due to ME/CFIDS being a neurological
disease and some patients have more problems than others with their eyesight.
Over a decade ago, Byron Hyde, M.D. (along with Anil Jain, M.D. in The
Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue
Syndrome) wrote about pain that is usually felt behind the eye but sometimes is
felt above the eye. Photophobia is listed by many experts and patients often have
to wear dark sunglasses even when inside brightly lit areas. If an opthamologist
tests for pupillar contractions (a light source challenge test), he may observe
dilation that is a contradictory cogwheel dilation instead of the normal contraction.
Eyes are also slower to react when changing from near to far vision. Nystagmus is
seen only at certain times of the day showing great inconsistencies. Blurred or
double vision (diplopia) is not unusual along with an abnormal contraction and
enlargement of the pupil that often is found on only one side. Tearing and dry
eyes are another usual complaint (but can be eased with over-the-counter (OTC) medication) along
with the loss of peripheral vision, night vision, and even color vision that has been
noted to be one-sided or bilateral. Palpebral oedema is also one-sided.
Patients fail to integrate visual information in a normal way which leads to
problems with reading (reading comprehension is reduced or, sometimes,
nonexistent) and writing difficulties (patients can find themselves making silly
spelling mistakes and not even notice it). Spacial dysfunction is not unusual
which causes problems crossing streets or judging the distance of automobiles.
They find themselves stumbling on the last stair when the repetition of identical
steps is not perceived correctly. Height perception is also altered which is why
patients can turn their ankles while merely stepping off a curb. They may find
themselves walking into walls or misjudging where a shelf when putting things
Dr. Charles Shepherd, in his book Living with M.E., says the pain behind the
eye (retro-orbital) does not respond to pain medications well and advises resting.
Blepharospasm is the involuntary eyelid flickering which he finds is tied to light
Many of these symptoms were noted in 1992 when Dr. Walter Potaznick and
Dr. N. Kozol published "Ocular Manifestations of Chronic Fatigue and Immune
Dysfunction Syndrome" in Optometry and Vision Science (Vol. 69). Dr. A.
Macintyre followed with a study published in Optician in 1994 ("Post viral fatigue
and the eye," 207/26).
Vision is our most dominant sense of all our senses and it also affects our
motor dysfunction making balance a problem as well. Vision is often affected
with a neurological disease and ME/CFIDS is a neurological disease. While some
patients find their vision affected mildly, others are very severely affected. The
best explanation we've found is by the Neuro-Optometric Rehabilitation
Association's piece written by Thomas Polizer, O.D. where he tells which cranial
nerve has the damage according to the symptomatic damage being felt. Problems
with vision can manifest itself in actually causing a patient to have vertigo. The
"Rehabilitation" in their name, however, is something that is not possible in any neurological
disease without first identifying and treating the actual cause of the problem. Like
other symptoms, most of these visual problems are probably mostly reversible
when the actual cause can be addressed. That's the direction we're going in!
The National CFIDS Foundation* 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606