CAPITAL CFIDS ASSOCIATION
P.O. BOX 660362
SACRAMENTO, CA 95866
Volume 15, Issue 4 December 2001
CCCA News and Information
Chronic Fatigue Syndrome (CFS),
Myalgic Encephalomyelitis (MB)
& Chronic Epstein-Barr Virus (CEBV)
UPCOMING CCCA MEETINGS
Sat. Jan 12, 1-3 pm, Dr. Marcello Cosso, DC.
Wed. Feb. 6, 5:30-7 pm, Newcomer/Share Meeting
Sat. Mar. 9, 1-3 pm, Speaker, TBA
Wed. Apr. 3, 5:30-7 pm, Newcomer/Share Meeting
Sat. May 11, 1-3 pm, Speaker, TBA
Wed. June 5, 5:30-7 pm, Newcomer/Share Meeting
July - no meeting (summer vacation)
Wed. Aug. 7, 5:30-7 pm, Newcomer/Share Meeting
Sat. Sept. 14, 1-3 pm, Speaker, TBA
Wed. Oct. 2, 5:30-7 pm, Newcomer/Share Meeting
Sat. Nov. 9, 1-3 pm, Speaker, TBA
Wed. Dec. 4, 5:30-7 pm, Newcomer/Share Meeting
Newcomer/Share Meetings are held at:
Lyon Real Estate 1st floor Board Room at
Lyon Village, 2580 Fair Oaks Blvd. Sacramento.
Group Meetings are held at:
MedClinic, 3rd fl. conference room
3160 Folsom Blvd. (at Alhambra), Sacramento.
NEXT SPEAKER MEETING - JANUARY 12
Marcello Cosso, D.C., is a Doctor of Chiropractic who is new to the Sacramento area and is specializing in applied kinesiology. The exciting discipline known as applied kinesiology (AK) utilizes manual muscle testing as a functional neurological analysis in order to aid in diagnosis and treatment. It blends information from multiple areas, including chiropractic, neurology, nutritional biochemistry, dentistry, osteopathy, and traditional Chinese medicine.
This sophisticated, holistic practice views everyone as a structural/physical, biochemical/nutritional, and emotional/mental being. Using AK gives a tremendous advantage to the physician in identifying the specific needs of the individual. It helps to focus treatment options on an individualized basis.
Dr. Cosso will be discussing some of the core elements of AK and how it may benefit those suffering from fibromyalgia and chronic fatigue syndrome.
CLASS FOR FIBROMYALGIA The Healing Arts Institute in Roseville offers a class often called "Reversing Fibromyalgia" which educates FM sufferers in the protocol of Guifenesen along with a special type of massage. Several doctors in the area are prescribing Guifenesen, but without the detailed information on how to make it work best. The class lists as required reading the book "What Your Doctor May Not Tell You About Fibromyalgia" by R. Paul St. Amand, MD, and Claudia Craig Marek (also available at the Institute). The brochure from the Institute reads: "A ground breaking treatment for this painful chronic disease will be discussed in depth. Based on his 30(plus) years of treatment experience and research - Dr. R. Paul St. Armand has developed a revolutionary drug protocol that has successfully reversed symptoms of Fibromyalgia in hundreds of patients. Covered in this lecture series will be a comprehensive overview of the disease, the Guifenesen protocol, mapping/massage techniques to track progress, and how to offer support and salicylate free product information to clients/patients with this debilitating condition. Information and a web based support group can be found at http://www.guidoc.com/. Learn how to provide solutions and real hope to the many people suffering with fibromyalgia. For information, contact the Healing Arts Institute in Roseville, 800-718-6824, 112 Douglas Blvd.
NEWS FROM A RESPECTED DOCTOR Our group recently received a letter from Dr. Jacob Teitlebaum, whose name appears often in the CFIDS research literature and who is a well-respected advocate and supporter of patients and information. His letter offers news to support groups like ours that, after much work, he has developed a kind of interactive computer-doctor program so that people who do not have access to a doctor who understands CFIDS can have somewhere to turn for information and help. He believes there are viable treatments for both CFIDS and Fibromyalgia, but that the doctor must have a good understanding of both illnesses and the many symptoms to know what to fly. First, he, of course, recommends his book, "From Fatigued to Fantastic" as a guide. He also offers his web site www.endfatigue.com. Somewhere on this web site is the option to enter a program that will ask questions and offer suggestions for treatment. I think there is a charge for this part of the program, but it appears to be on a sliding scale, so check it out anyway. He writes that he does not and never will "take money from any company whose products I recommend", (a good thing to know in advance!). For further information, read his book, log onto his web site, or call his office at (410) 573-5389.
NEW ADDRESS FOR CCCA ON THE WEB Please be sure to visit the CCCA web site at our new web address - http://ottem.org/ccca- for links to CFIDS related websites. Please feel free to email us at CalCapitalCFIDS@bigfoot.com with any questions, comments, suggestions, or interesting link information. A source of additional information on the web is The CFIDS Association of America, Inc. at http://www.cfids.org.
Note: Is it time to renew? Your membership expiration date can be found on the mailing label after your name!
Name Change Questionnaire -- A Change in Name
The NCW recommends that the name of the syndrome be changed to chronic neuroendocrineimmune dysfunction syndrome, or CNDS. This is recommendation is based on 1) the profile and frequency of the commonly reported symptoms of patients with chronic fatigue syndrome, 2) the chronicity of the illness and the lack of understanding of its cause(s) and, 3) the published evidence supporting an aberration or dysfunction of the neurological and immunologic systems. The name is in accordance with the principles outlined in Section II, above. Changing the name to CNDS does and should not imply that the etiology or pathophysiology is understood. This name is broad enough to encompass the most commonly reported symptoms. It is quite reasonable to conclude that the commonly reported symptoms are associated with or referable to the neurologic, neuroendocrine, and immunologic systems. Finally the name explicitly states that the disorder is chronic.
Please feel free to make and distribute copies of the questionnaire and
encourage others to complete and submit it. Please respond by January 7,2002 (or
ASAP - Ed.) Please provide the NCW with your feedback by completing the
questionnaire and returning it to either: 1) email to:firstname.lastname@example.org
and put "Name Change" in the subject line, or 2) mail to:
Name Change Workgroup, c/o Ms. Janice C. Ramsden,
1 Center Drive, MSC 0159, Building 1,Room 333,
Bethesda, MD 20892-0159.
For the questions below, place a "X" mark or fill in your response for each question. This information will help us obtain a better idea of how our proposal is perceived by the different groups in the CFS community.
1) Are you a patient, family member of a patient, physician or other health care professional, researcher or family member or friend of a person with CFS?
_______patient _______researcher _______health care professional _______family or friend
2) Do you feel the name should be changed at this time?
Feel free to give us your reasons for this choice:
3) In what country do you reside? _______
4) After reading the overall recommendation, how do you feel about it?
_______strongly agree _______agree _______neutral _______disagree _______strongly disagree
5) Do you feel that the new term Chronic Neuroendocrineimmune Dysfunction
Syndrome (CNDS) is acceptable?
_______strongly agree _______agree _______neutral _______disagree _______strongly disagree
Feel free to give us your reasons for this choice:
To Fu or Not To Fu: Soy's The Question by Melissa Kaplan
The effect of soy - specifically, its isoflavones - on lowering "bad" cholesterol (LDL - low density lipoproteins) has been documented well enough by researchers that the FDA lets soy product manufacturers put health claims on their products, so long as the product contains at least 6.25grams of soy protein. The only problem with this is that the research recently reported by the American Heart Association indicates one has to ingest at least 25-50 grams of soy protein. That's about the equivalent of 4+ 8-ounce glasses of soy milk per day, less if you eat other forms of soy protein during the day. The soy milk products I currently have on hand show the following protein and serving information:
Sun Soy = 6 grams per 8.024 fl. oz Soy Silk = 6.5 grams per 8.16 fl. oz Eden Soy = 6 grams per 8.5 fl. oz
[Each of the nutrition data panels on these products listed a serving as being "1 cup" but each had different ml specified. To run your own calculations: 8 oz = 236.6 ml; ml x 0.034 = US ounces.]
Consuming this amount of soy protein every day can lower your cholesterol level by 5-7%. Cool. Easy. No sweat. Just replace a couple of the 8 oz glasses of water or herb tea you drink every day with 1-2 servings of soymilk, and use the rest in your soups, protein shakes, cereal, pudding, etc.
Just in case you got to thinking that that was too easy, here's a little wrinkle the panel of nutrition experts found as they reviewed 10 years worth of research data on soy and cholesterol: you need to ingest at least 40-50milligrams of isoflavones per serving. What's the catch? The isoflavone quantity may not be listed on the carton:
Sun Soy = 33 mg/serving Soy Silk = 40-50 mg/serving EdenSoy = no data
Okay, so soy milk has gotten a lot tastier than the brands available 10 years ago, so drinking more of it everyday isn't a problem. You've discovered the fun of munching on steamed soybeans. You now throw textured vegetable (soy) protein chunks in your homemade chili instead of some or all of the meat protein you used to use. You make it a point to (try to) eat lots of veggies and fruits instead of things loaded with animal protein and fats. You've even cut out foods that can also raise or keep elevated your LDL, such as corn, potatoes and other root vegetable. And of course you make sure to exercise several times a week (which increases your HDL level, your "good" cholesterol). Oh. Wait. That's right. It's just about impossible for those of us with CFS/FM to exercise enough to have any impact on our cholesterol levels.
There's also the fact that hypercholesterolemia (high serum cholesterol) is for some reason commonly found in PWCs, even if they have been maintaining a mostly or completely vegetarian diet. Since at least some of the elevated cholesterol levels have to do with something beyond our control, and our inability to exercise adequately, how much impact dietary changes will actually have is unknown.. .though it is better to be safe than sorry.
Or is it? In a study published in April 2000 in the Journal of the American College of Nutrition, researchers in Hawaii found that found people who eat tofu at least twice a week may double their risk of suffering cognitive deficits in old age. They theorize that chemicals in soy may interfere with the brain's ability to make and keep nerve connections; without those connections, brain function and the brain itself changes over time. The study, following 3700 Japanese men, and their wives, since the 1960s, found that those who ate tofu two or more times a week were 1.8 times more likely to score low on mental function tests than those who ate soy occasionally. There were other factors that may have clouded the findings, such as early malnutrition, vascular problems, etc., that the researchers tried to account for, but it is clear that this is one area that needs to be researched further. Researchers think that one of the plant's chemicals is interfering with our tyrosine kinase, an enzyme that helps keep nerve cells robust and preserves the connections.
Plant Estrogens: A Thorny Dilemma Soy isoflavones mimic estrogen and has been touted as a ~natural" estrogen replacement for women who are leery about using chemical hormone replacement therapy, especially women at risk for breast cancer for whom estrogen can pose a health risk. Other researchers are becoming increasingly aware that estrogen and the other uses hormones play a much wider role in our bodies, including brain function and nerve health. That's why some are looking at the effect of "natural" estrogen, such as some of the isoflavones found in soy, on brain and body. But, at a meeting of the American Association for Cancer Research, researchers at the University of Illinois in Chicago reported that soy protein may be less effective in reducing breast cancer risk than previously thought. Researchers did find that women who regularly eat soy protein appear less vulnerable to breast cancer, and linked that protection to one particular isoflavone, genistein.
The Illinois researcher who led this latest work says tests in rodents fed soy protein stripped of isoflavones showed significantly more tumor protection than soy protein with the compounds and, further, that genistein was much less effective at blocking tumor growth than its relatively ignored sibling molecule, daidzein.
Ties that Bind There are two other possible adverse heath effects when it comes to soy. Soy is goitrogenic: it binds iodine, preventing its uptake and use by the thyroid gland, leading to hypothyroidism. Many soy products are also high in fat; since fat interferes with calcium metabolism, high intakes may lead to calcium deficiency unless calcium in the diet is supplemented and taken at a time several hours before or after fat (soy) intake. (It is nice that some of the soy milk products are enriched with calcium but I would still recommend taking your calcium supplements at some other time.)
Tofutti it Okay, so we can't exercise like we would if we were healthy, many of us are hypercholestereolemic, and we're already cognitively dysfunctional. Does this mean we should go ahead and increase our soy intake to help reduce the cholesterol? Well, it can't hurt our cholesterol levels. But we still need to ensure we are eating a widely varied and balanced diet, as much as our various gut dysfunctions and food sensitivities will allow. Lon White, chief author of the Hawaii study, says that the bottom line is that isoflavones act like drugs. As consumers, we need to remember that about soy - and other herbs and medicinals we take. Keep track of your soy intake, monitor your thyroid and cholesterol, and watch your calcium intake.
Sources: Church, Susan. 2000. Soy Clobbers Cholesterol: American Heart Association backs soy as heart-healthy. HealthSCOUT.com Goldstein, Jay. 1992. The Diagnosis of Chronic Fatigue Syndrome As A Limbic Encephalopathy. From, Chronic Fatigue Syndrome: The Limbic Hypothesis. http://www.sonic.net/melissk/goldsten2.html Gordon, Eric. 2000. Personal communication. Marcus, Adam. 2000. Soy Under Fire: Two studies question its health benefits. HealthSCOUT White, LR, et al. 2000. Brain Aging and Midlife Tofu Consumption. JACN April 2000, Vol 19 No 2
JAMA STUDY MISINTERPRETED A review article in the Sept.19 issue of The Journal of the American Medical Association (JAMA) caused many members of the media to overestimate the effectiveness of graded exercise and cognitive behavioral therapy (CBT) for CFIDS.
The review's authors, who examined 44 treatment stud conducted from 1986-2000, concluded that exercise and CBT have shown "promising results" in CFIDS. Some mainstream media began implying that these therapies can cure CFIDS despite the fact the authors admitted there was insufficient evidence from the studies to draw definite conclusions.
The CFIDS Association issued a statement that behavioral therapies are not a cure, and stressed that they can be harmful to CFIDS patients. The Association also pointed out that the exercise referred to in the article is graded therapy conducted under the supervision of a skilled professional, not exercise as the general public understands it.
The Association asked members of its CFIDS Activist (C-ACT) and CFIDS Public Relations (CPR) teams to help counteract misperceptions about the illness and treatment by responding to coverage appearing in their local newspapers.
The CFIDS Chronicle, Fall 2001
FM Helped by Olanzapine? Researchers gave two FM patients the atypical neuroleptic olanzapine (i.e. xyprexa) for the control of symptoms related to fibromyalgia. Prior to the use of olanzapine, both patients had received a multitude of treatments, none of which greatly improved their ability to function With olanzapine, both patients reported a significant decrease in pain and marked improvement in daily functioning. In one case, the pain returned during a period of time when olanzapine was discontinued in daily activities. With olanzapine, both patients reported a significant decrease in pain and marked improvement in daily functioning. In one case, the pain returned during a period of time when olanzapine was discontinued, an effect that was reversed when olanzapine was reintroduced. There were no serious side effects. A blinded, placebo trial is needed of this drug in FM. (Source: "Olanzapine for the treatment of fibromyalgia symptoms, Kiser et al. (Pain Symptom Manage 22(2): 704-8, 2001))
Visual Dysfunction in CFIDS By William V. Padula, O.D., FAAO, FNOR
People with chronic fatigue and immune dysfunction syndrome (CFIDS) often report visual symptoms, such as visual fatigue, eye strain, intermittent blurred vision and headaches. These are commonly recognized as signs of difficulty with the eyes.
However, people with CFIDS (PWCs) can experience other symptoms that are unrelated to structural problems in the eyes and optic nerve, and actually arise from trouble with the visual process. These may include: difficulty with balance, dizziness, vertigo, photophobia (glare sensitivity), double vision, seeing print appear to move when reading, difficulty functioning in crowded, busy environments, panic attacks and even visual hallucinations.
The visual problems that PWCs experience are often overlooked and symptoms are attributed to other problems, since CFIDS is a diverse condition that may be caused by many factors. Unfortunately, when those other perceived problems are treated, they usually fail to stop the visual symptoms.
What is vision? Vision is a dynamic, interactive process of motor and sensory functions. Our brains use our eyes to help organize and control the movement of our bodies and to stabilize what we see around us - this is called the visual process. When it is out of balance, it interferes with all aspects of performance, including cognitive perception.
A common misunderstanding is that "seeing" (perceiving something with our eyes) delivers information to the brain much like a computer. Seeing is much more complex. It is related to movement, posture and our motor system in general. Because our brains usually coordinate these functions so rapidly and so well, most people take the entire process for granted. Only recently have we begun to learn more about how vision, movement, and perception are connected.
We have two kinds of vision. The focal process carries images through the central part of the eye and helps us see details. It also enables "fixation" - the ability to look directly at something - and supports attention and concentration. However, the focal process only delivers information on an object to the brain if the eye is directly fixed on it.
The other kind of vision is the ambient process. The ambient process delivers information to the brain from the peripheral retina. Peripheral vision (what we see in the 'margins' of our vision instead of what is directly ahead) affects our awareness of where we are in space and where things are around us. This part of our vision is very important to the body's motor system. It also serves to organize our focal process by spatially orienting us before we look at details. The ambient visual process must work in conjunction with the focal visual process for effective vision.
Post trauma vision syndrome In any neurological condition, such as with traumatic brain injury, cerebrovascular accidents, and multiple sclerosis, as well as in CFIDS, imbalance can occur between the ambient and focal visual process. Research using visual evoked potentials (brainwave tests) has documented this dysfunction, which is called post trauma vision syndrome (PTVS). In my experience, PTVS is common in PWCs.
In PTVS, the ambient visual process loses its ability to organize information spatially. When that process is derailed, the person becomes "focally bound," or overly fixated on visual details, and has to work harder to use his/her vision. The extreme effort and intensity required to use the focal visual process leads to visual fatigue, headaches and eyestrain.
PTVS can also cause individuals to visually fixate on individual letters instead of words when reading, and to have difficulty "releasing" or moving their vision away from letters and words. This causes words to appear to jump and move about the page as the person attempts to read. It can also cause the intermittent blurring and even double vision (diplopia) that some PWCs experience.
PWCs with PTVS also find it more difficult to function in dizzying, crowded environments, such as supermarkets or shopping malls. They identify people walking around in their peripheral vision as detail that soon becomes confusing. In some cases, persons with severe dysfunction of the focal and ambient visual process will become anxious or even develop panic attack syndrome, due to the way that their visual world is being re-ordered. Visual midline shift syndrome
The ambient visual system also works with the other senses and neuromotor system to give the brain information on how the body is oriented in space. If the ambient system is damaged, the person will have difficulty with movement and balance, which often happens in CFIDS.
For instance, our ambient vision and motor system tell us where the midlines of our bodies (imagine an invisible line drawn down the center of your body from head to toe) are in space. Normally you know where your midline is, both front to back (anteriorly and posteriorly) and from side to side (laterally). But if either your ambient vision or your motor system is impaired, your sense of midline may be shifted from front to back or from side to side, distorting your sense of space. This has been termed visual midline shift syndrome (VMSS).
When a person has VMSS, part of the visual process causes the brain to experience the floor as being tilted. They then feel the need to lean or "drift" to one side when sitting or walking in order to feel they are perpendicular to the floor again. The person's posture may be distorted, and they may even experience back pain or muscle rigidity. Often, however, the person is not aware of the distortion.
Simple tests can be performed to determine if a person has VMSS. By simply observing the person walk, one can frequently observe increased weight bearing on one side or the other. In addition, the person will frequently tend to drift to one side when walking. They also will sometimes bump into objects more on one side than the other. Neuro-optometric rehabilitation
We tend to think about our individual sensory processors (our eyes, ears, nose, tongue, mouth and fingers) as separate systems, so we have highly specialized professions to treat each of them. We have optometry and ophthalmology for vision, audiology for hearing and specialists in olfaction for smell. We usually get effective treatment for a specific sensory organ, but this specialized approach is not effective in dealing with problems that involve both the sensory and motor systems.
People with CFIDS or fibromyalgia who have visual dysfunction can benefit from a neuro-optometric rehabilitation evaluation. This exam is very different from a routine eye exam. Its purpose is to analyze in depth the relationship between the ambient visual process and the neuro-motor system using a variety of tests.
After a comprehensive evaluation is made, prescriptions can be given for various types of lenses and glasses that can counter the effect of VMSS. Frequently, the doctor will prescribe specially designed "yoked-prism" glasses, which shift the visual midline.
A prism is a wedge of glass or plastic that produces an optical effect. When you look through the prism at an object, it will appear to be shifted in position toward the apex or thin part of the prism. Prisms accomplish this effect by expanding or compressing part of the visual field, which counteracts the distortions in vision that a person can experience following a neurological event such as a stroke or CHDS.
In some cases, glasses can dramatically improve posture and balance. In the "tilted room" example given earlier, yoked-prism glasses can cause the floor to be seen as level. The person will then shift his/her weight in the necessary direction and will have better balance. If the midline shift is to one side, yoked prisms can be used to shift the midline and prevent leaning.
Yoked-prism glasses are usually prescribed for therapeutic use in short time intervals each day and should only be used under the direction of a neuro-optometrist. The doctor may also recommend using these prisms during physical or occupational therapy sessions.
Another therapeutic aid that can be employed is binasal occlusion. This involves placing two strips of opaque vertical tape on the part of each lens that is closest to the nose. The ambient visual system does not see detail, but instead organizes space and orients to vertical lines and boundaries in the visual environment. The binasal occlusion provides a new vertical boundary to which the malfunctioning visual process can anchor itself.
Prisms and binasal occlusion can also be used to treat PTVS by reducing symptoms and enhancing visual performance. Individuals with PTVS experience a compression in their peripheral vision, and these tools can help counter that effect by reducing the central field of vision and expanding the periphery. This reduction of stress in the visual system frequently improves attention, concentration, memory and cognitive function.
This does not mean that treatment through lenses, prisms and binasal occlusion will cure CHDS or fibromyalgia, but in many instances, it can reduce the symptoms that are being caused by the PTVS and VMSS and improve the individual's functioning.
DO YOU HAVE VISUAL DYSFUNCTION? Many people with CFIDS (PWCs) report having "eye problems." So how can you tell if you have post trauma vision syndrome(PTVS) or visual midline shift syndrome (VMSS)? The only way to be sure is to be evaluated by a qualified medical professional. However, you can use the following checklist to help you decide whether you are at risk.
If you check off the majority of symptoms, you may want to ask your health
care provider for a referral to a neuro-optometric rehabilitation specialist.
The Neuro-Optometric Rehabilitation Association (NORA) offers assistance in
locating qualified professionals who can treat visual problems in CFIDS
patients. NORA's Web site is http://www.nora.cc/.
Symptoms of PP/S include:
o Double vision
o Blurry vision
o Dizziness or nausea
o Attention or concentration difficulties
o Staring behavior (infrequent blinking)
o Spatial disorientation
o Losing your place when reading - Not being able to find the beginning of the next line when reading
o Visual memory problems
o Pulling away from objects when they are brought close to you
o Seeing objects as moving when they are actually stationary
Symptoms of VMSS include:
o Dizziness or nausea
o Spatial disorientation
o Consistently staying to one side of hallway or room
o Bumping into objects when walking
o Poor balance or posture - leaning forward, backward or to one side when walking, standing or seated in a wheelchair
o Back pain or muscle rigidity
References 1. Padula Wand Argyris S. Post Trauma Vision Syndrome and Visual Midline Shift Syndrome. Neuro Rehabilitation, 1996; 165-171.
Dr. William Padula is head of the Padula Institute of Vision Rehabilitation and has done extensive research in the area of visual dysfunction. He can be contacted by writing to the Institute, 652 Boston Post Rd., P.O. Box 1408, Guilford, CT 06437, or by visiting his Web site at http://www.padulainstitute.com/.
Visual Dysfunction in Chronic Fatigue Syndrome By Lesley J. Vedelago, O.D.
There are few references in the literature to visual and/or ocular disturbances in chronic fatigue syndrome (CFS), even though visual symptoms are common. Ocular symptoms have been quantified, and are significantly more common than in control groups. The ocular signs and symptoms of CFS have not been considered to be a major part of this condition in the past, yet it becomes very obvious when working with these patients that the ocular system is very much affected by, and in turn affects, this systemic condition. Symptom histories of 141 CFS patients referred to my practice are summarized in the accompanying table. The majority had complained to the referring doctor of bothersome visual complaints, but some had not considered their visual problems to be significantly affecting their day-to-day function, or may not have mentioned any visual problems at all. Visual symptoms The visual symptoms typically encountered with CFS patients include:
o Blurred or foggy distance and/or near vision. Blur tends to fluctuate
according to the state of the fatigue at the time;
o Difficulty focusing from distance to near and/or near to distance;
o Slowness or inability to focus on objects, particularly at near;
o Difficulty tracking lines of print. Patients seem confused and distracted by the lines of print above and below where they are reading;
o Poor short-term memory and concentration (generally) with reading being markedly affected;
o Diplopia or ghosting of images;
o Problems with peripheral vision; patients complain of not seeing objects in their side vision and of continually bumping into things and veering. Some say they feel like they have tunnel vision;
o Misjudging distances, clumsiness, poor balance and coordination. Difficulty driving due to problems judging distances;
o Dizziness and inability to tolerate looking at moving objects;
o Spots, flashes of light, floaters and halos;
o Intolerance to light (glare);
o Grittiness, burning, dryness or itchiness. Patients complain of sore eyes usually becoming worse as the day progresses;
o Headaches often increasing when reading, concentrating visually and driving.
In many cases almost all of these symptoms occur, producing varying degrees of disability. These patients have sensory intolerance and appear to have a degree of inability to suppress background sensory events from reaching a distracting level in consciousness.
Objective Ocular Findings Upon examination, findings may include:
o Poor oculomotor control. This is evident when observing motilities,
particularly saccadic eye movements. Saccades, normally quick eye movements, are
very slow, with marked jerkiness. Conscious effort goes into changing visual
fixation, as if it is hard to let go of looking at an object once vision is
fixed on it. Pursuits (tracking an object) are not smooth and cannot be done
quickly. Discomfort and often nausea is associated with saccadic and pursuit eye
o Exophoria, the tendency for one eye to diverge or turn outward when the other eye is covered, is often greater at near in these patients, usually with a slow recovery. However, the exophoria may not appear high due to a long-term compensation process. CFS patients often adopt a typical posture associated with exophoria-sitting well forward on the chair with their shoulders halfway down the chair back in a semi-reclined position;
o Remote nearpoint of convergence, where both eyes converge on the same close-in location at the same time, is usually observed, with slow recovery. This test may be quite painful;
o Reach/grasp/release tests that require the patient to reach out and touch or grasp an object, shows a marked decrease in the patient's ability to reach and grasp after release. One eye usually diverges without the patient being aware. Patients often complain of nausea, significant discomfort or dizziness when performing this test;
o Near/far/near fixations commonly show poor convergence at near with one eye usually diverging. Such vergence changes are typically very slow and often uncomfortable to exe cute, with sometimes an associated tendency to use raised eyebrows and wide open eyes to assist in changing to far;
o Constricted peripheral fields. In my experience, treatment with lenses and vision therapy produces marked improvements in field. In my opinion there are probably several factors involved, including improved central! peripheral processing and sensory-motor coordination, and hence heightened attention;
o Staring appearance; low blink rate and incomplete blinking;
o Small pupils;
o Sensitivity to lights;
o Tear film and ocular surface abnormalities. Low tear break-up time, related to inadequate production of the oil or mucus layer in tears, is frequently observed. So is rose bengal corneal staining, which reveals cell death in the cornea due to dryness;
o Low grade chronic allergic conjunctivitis;
o Visual midline shift in these patients, particularly if the patient has been diagnosed with fibromyalgia.
Management of the CFS patient Behavioral optometric management of the visual manifestations of CFS should utilize the following treatment options:
o Best subjective correction for distance and near. Patients respond favorably to low plus lenses at near.
o Prisms ground into prescription lenses. Base- in prisms, where the thickest part is placed nearest to the nose, often provides immediate relief. This is particularly true for near vision, but base- in prisms can also greatly reduce the severity of visuo-spatial symptoms, sometimes completely. Patients generally report things look brighter, they can see more, concentrate better, and neck pain and tension, including headaches, have been relieved. They often say the foggy or cloudy feeling in their head has gone and that they can read for longer periods. Yoked prisms, where the base ends of the prisms are placed in the same position for each eye, can also produce dramatic changes in some patients.
o Progressive lenses are my choice for CFS patients. I use them as supportive lenses to reduce the effort of focusing from distance to near, providing progressive clear vision.
o Tints are regularly used because of the increased sensitivity to light.
o Ocular lubrication therapy is often needed to treat the dry eye problem and symptoms, and to eliminate the corneal staining. Warm compresses may also provide some relief. Many of these patients have significant allergy problems and I will also proffer advice on relief of allergic symptoms.
I find it interesting that in patients with fibromyalgia, a significant portion have a history of one or more of the following: strabismus, ambly: opia, anisometropia, eye surgery for strabismus (often multiple), longstanding binocular vision problems, nystagmus, whiplash or closed head injury. All of these conditions have significant potential effects on body posture. The long-term effects of poor body posture on the overall health of the individual have been well documented, and visual dysfunctions appear to be a major contributing factor to poor body posture in CFS patients. Because CFS is a real illness of increasing prevalence, and as fatigue itself becomes better understood, it is important that eye specialists are not only fully informed about the condition itself, but also cognizant of the ocular / visual disturbances for which we can play an important role in treatment and rehabilitation.
Reference Potaznic W et al. Ocular manifestations of chronic fatigue syndrome and immune dysfunction syndrome. Optom Vis Sci. 1992; 69:811-814.
Lesley Vedelago is a fellow of the Australasian College of Behavioural Optometrists and the College of Vision and Development, and a member of the Neuro-optometric Rehabilitation Association. She runs a behavioral optometric practice in Brisbane, Australia, and is an associate lecturer at the University of New South Wales.
Excerpted with permission from Visual Dysfunction in Chronic Fatigue Syndrome: Behavioural Optometric Assessment and Management. Journal of Behavioral Optometry 1997; 8(6): 149-153 . Text has been edited for clarity.
Last, but not least...
Should CFIDS patients donate blood? In response to the tragic events that took place on September 11 in New York City and Washington, DC, there has been a call for blood donors across the nation. The Association recommends that CFIDS patients refrain from donating blood, bone marrow or organs, as it is currently unknown whether or not this is a safe practice since the contagion issue has not been resolved. Additionally, donating blood may not be safe for persons with CFIDS (PWCs), as research has shown that many PWCs have low blood volume and other vascular problems and removing additional blood could provoke a relapse.