A Joint Venture of Independent Professionals
United in the Quest to Bring Validation, Hope and Healing
Specialized Multidisciplinary Assessment for Cognitive/Memory Symptoms
and Related Problems Associated with:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Multiple Chemical Sensitivity
Toxic Chemical and Mold Exposure
One of the most frustrating experiences for people with ME/CFS, FM or MCS is the absence of objective findings that support the subjective illness experience. Some of the symptoms such as pain and fatigue are internal experiences. Other symptoms such as irritable bowel and sleep disorder are overlooked as benign by many practitioners because they are not progressive or lethal. Cognitive dysfunction including poor short term memory, difficulties with word finding, problems with multitasking and effortful thinking tasks is one of the most disabling and least validated problems in ME/CFS and FM. The research on cognitive function in ME/CFS, FM and MCS has solidly shown that there are objective cognitive deficits however these results have been slow to influence clinical practice. And despite the consistent research findings of dysfunction many practitioners continue to view the cognitive complaints of ME/CFS, FM andMCS patients as evidence of increased “somatic concern”; in other words, a psychological problem.
One of the road blocks in transforming the research findings into clinically useful protocols is that even though a particular test may show group differences between a group of 100 affected individuals and 100 healthy controls, individual results may not be clearly abnormal. This is because many people with complaints fall into the “normative” range. The normative range is enormous. It encompasses 87% – 95% of the population (1.5 – 2 standard deviations from the mean) depending upon the cutoffs used. Therefore a person scoring in the 90th percentile of the population (ie very higih functioning) before becoming ill or being exposed to a toxin who experiences decreased function to the 50th percentile during illness will be classified as “normal” despite the fact that his/her performance has decreased significantly and despite the fact that he/she may no longer be able to do the job or activities which were previously rewarding.
A breakthrough regarding this problem of classifying individuals has been developed by the painstaking work over the past 20 years of Dr. Kaye Kilburn, a professor at the University of Southern California. He has had the opportunity to administer standardized tests to large groups of people exposed to known chemical toxins (e.g., sulfur dioxide leaks). In his book “Chemical Brain Injury” he outlines the test profiles of individuals exposed to a number of specific chemical toxins. His approach is not only to measure whether some aspects of functioning are below the normative range but also to compare aspects of cognitive and sensory function that are expected to be affected with those that are not affected. This allows a comparison of a person to him/herself in addition to other people. Dr. Kilburn’s protocol allows useful individual interpretations of commonly used standardized tests.
Another pioneer in the field is psychologist Dr. Nancy Didriksen who runs a busy private practice in Dallas, Texas. There she has personally examined over 1000 patients with ME/CFS, FM and Multiple Chemical Sensitivity. Dr. Didriksen has given many presentations about which tests are the most sensitive in these illnesses and what deficits can be expected. Her protocol is based on that suggested by the World Health Organization for the detection of chemical exposure. These tests are all commonly used and well standardized.
Our team has done a thorough review of the literature, has consulted with several published authors including Drs. Kilburn and Didriksen. We have compiled what we feel is the most comprehensive and focused testing protocol available in Canada. We have the combined expertise of psychiatry, psychology, optometry, audiology. Interestingly the cognitive profiles in each of ME/CFS, FM, MCS and certain toxic exposures are similar. For this reason we decided to combine many of the tests reported in the literature as being sensitive for each of the disorders into one large protocol and use the same protocol for every client. In addition to being comprehensive, this will allow us to learn more about the similarities and differences among persons with this group of disorders.
The psychological component, including cognitive testing, will be administered by Mr. Gerard Alberts or Mr. Robert Hadden, registered psychologists with extensive experience in psychometrics and other aspects of psychological evaluation. Cognitive effects are perhaps some of the most misunderstood and questionable symptoms of those suffering from ME/CFS, FM and MCS. Psychometric testing can provide valid and reliable data to support patient reports of cognitive problems. Well-established, standardized tests and procedures are used to provide objective results in efforts to validate cognitive symptoms such as poor short-term memory, attention and concentration problems, slowness in mental processing, problems with word finding, and other aspects of verbal and nonverbal performance and memory.
This testing is the most time-intensive component of the multidisciplinary assessment. It is extensive and takes several hours to complete, which can be very tiring for the patient. Testing can be arranged to suit one’s schedule and energy level. However we suggest testing for several hours daily to replicate a typical work situation. In this was we may be able to observe if fatigue effects are noticed. The team approach allows results to be interpreted and understood in the context of symptoms assessed from various professional perspectives. A report of findings is provided with recommendations for improving workplace performance and/or quality of life. These may include both traditional and alternative interventions.
Dr. Diana Monea (optometrist) will conduct the visual component of the protocol. The effects of toxic exposure/CFS/FM on vision are frustrating and chronic. Since 80% of what we learn is through vision, visual impairments affect every waking moment and can be debilitating as one tries to work, study or parent. The visual symptoms may include: dry eyes, sensitivity to lights, fluctuating and fading of vision, eye pain, loss of vision or color vision changes. The visual consultation involves digital documentation of the corneal map for dryness, retinal photos for signs of eye disease, refractive testing, visual field to determine any visual loss, and color vision assessment. All assessment results are stored digitally and can be e-mailed if necessary to treating professionals. This consultation is a complete eye-health assessment, followed by a visual consultation.
The psychiatric and medical component of the assessment will be completed by Dr. Eleanor Stein, a child and adolescent psychiatrist by training with a special interest in with ME/CFS, FM and MCS and toxic exposure in her practice. She will undertake a focused history of the presenting symptoms including a detailed history of the areas that are affected by these diseases and a careful review of symptoms to rule out other causes of the problems. She will also conduct a psychiatric interview to establish whether psychological and/or psychiatric issues are a part of, secondary to or independent of the physical health problems.
She will make DSM IV (or DSM V coming soon) diagnoses if appropriate and will rate functional capacity using the Global Assessment of Functioning Scale from the DSM IV and the degree of disability using the Social Occupational Functioning Assessment of the DSM IV. This assessment will also include recommendations for further testing if appropriate and education regarding the benefits of careful self observation as a way of figuring out what makes symptoms better and worse. Dr. Stein is currently using conventional psychiatric treatments as well as a functional medicine approach to rehabilitation.
Dr. Anne Woolliams (audiologist) will conduct the audiological component of the assessment protocol. The effects of toxic exposure/CFS/FM on the auditory-vestibular system can be subtle to severe. CFS/FM can cause significant balance and equilibrium problems, hearing loss, auditory processing dysfunction, and tinnitus (ringing in the ears). The auditory-vestibular system is one of the most sensitive systems within the body to toxins and may begin to show signs of significant destruction before any other signs of toxicity may be seen. The audiological assessment within the entire toxic exposure/CFS/FM evaluation includes several direct measures of the integrity of the auditory-vestibular system. Hearing thresholds—the softest sounds, which can be heard—are measured, as well as the state of the actual cells within the inner ear and how effectively sound is transmitted from the inner ear to the level of the brainstem. These sensitive evaluative procedures allow us to measure the function of the auditory-vestibular system and correlate the results with the severity of damage to the ear from toxic exposure/CFS/FM.
Who can refer
You can contact the ETeam yourself but you will need a physician’s referral before proceeding with the evaluation. The most important consideration is diagnosis. Our equipment and test selections are designed specifically to assess cognitive dysfunction and related symptoms in people with ME/CFS, FM and MCS and certain toxic exposures. Being based in Calgary, we are especially interested in clients with health and cognitive problems following toxic mold and petrochemical exposures. We will not accept referrals for neuropsychology (trying to find out which part of the brain is affected) or for other unrelated disorders affecting cognition such as head injuries or neurological disorders. Note that although in most cases we will be able to confirm whether you have objective findings consistent with ME/CFS, FM, MCS or toxic exposure, cognitive testing cannot prove the cause of your condition nor can it predict whether your symptoms will improve with time and treatment.
For most clients the first step will be an appointment (in person or by phone) with Gerard Alberts or Robert Hadden to discuss whether your symptoms fit the profile of people we feel we can help. You will also discuss the protocol and the fees. Be sure to advise us of your time schedule and energy limitations. Also let us know if there is a chance your test results may be used in any legal action. If your assessment is for medico-legal purposes, you must be referred by your lawyer and the fee schedule will reflect the increased work required by us.
After agreeing to an ETeam assessment, you will be sent our patient package including questionnaires. These must be completed and returned at least 3 weeks prior to your assessment. Without this information we will not go ahead, and will rather postpone your assessment. We want to make sure that you are coming to the right place before moving forward.
Once we have received and reviewed your medical information, you will be advised of your appointment times and the contact information for each ETeam professional. If you have to change an appointment time please contact the ETeam office directly. To avoid delays in your assessment, please give maximal notice of appointment changes.
The ETeam protocol requires approximately 12 – 15 hours of in person assessment time with the various team professionals. We now have available exercise testing as an add on to our assessment package. Please see the attached sheet for information on this. Please advise the ETeam office if you wish to include exercise testing so that this can be scheduled for you.
After you have completed the entire assessment, the team members will exchange information and meet to discuss their findings with respect to you. Please allow up to two months for this process especially if your assessment is before a holiday. When your results are complete, you and your referral source (physician or lawyer) will receive a detailed written assessment including individual reports from each ETeam professional and a summary of the main findings. You will receive a copy of Dr. Stein’s self management manual to help you learn more about your health and ways to imrpove it. You will then meet with Gerard Alberts or Robert Hadden in person or by phone for a follow up appointment to discuss the findings and recommendations. You are welcome to book follow up appointments with any of the ETeam professionals if you wish further assessment or treatment.
The objective of the ETeam protocol is to reliably measure the cognitive and sensory function in people with ME/CFS, FM, MCS and toxic chemical and mold exposure. The information you receive may validate what you already know about yourself but have been unable to quantify or describe in objective terms. You will be given a written report summarizing the results of each assessment. In some cases we will recommend further testing which may include further medical tests, immunological tests for evidence of exposure or sensitization to chemicals or mold, nutritional testing or neuropsychological testing. The report will also include ideas and techniques to manage and compensate for your symptoms. In some but not all cases cognitive deficits are reversible with optimal treatment. Our group expertise and experience is diverse and we have liaisons with other practitioners who offer both conventional and complementary treatment options. We will provide you with information regarding all available options for further assessment and treatment.
The medical component of the assessment, the psychiatric interview, is covered by Canadian provincial health care plans. The psychological, visual and audiological assessments are not covered. Most insurance plans will pay a portion of these costs. Upon request we can provide you with a list of the test procedures to submit to your insurer so that you will know the ultimate cost to you. In most cases there will be an outstanding portion of the fee that will be billed directly to you, the client. The fees differ for patients who are resident of Alberta, resident of a province other than Alberta and for medico-legal assessments. Please indicate your situation so that we can give you the correct fee information. Half of the total fee is payable at the time you sign the informed consent to undertake the ETeam protocol and half is payable when you receive a draft of the final report. For medico-legal assessments, the informed consent is signed by your lawyer and the lawyer pays the ETeam directly. In all other cases you are responsible for the fee. It is your responsibility (not ours) to get any reimbursement that you may be eligible for through insurance, WCB or out of province health care plans. We will provide you will all documentation you require to obtain reimbursement.
The ETeam is located in Calgary, Alberta though two of our members have offices in other cities as well (Anne Woolliams in Edmonton and Diana Monea in Regina). If you will be coming from out of town to participate, we will do our utmost to book all of your appointment the same week. You will need to book at least a month ahead for optimal scheduling and have your paperwork back to the ETeam office 3 weeks before your scheduled appointments. Please allow at least one full week in Calgary. Pre and post contact such as answering your questions about the protocol, informed consent and follow up can be done by phone and email.
We are very excited to be offering this much needed service.
The ETeam and ask about cognitive testing for effects of chemical or mold exposure, Multiple Chemical Sensitivity, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia.
For more information contact the ETeam at:
Didriksen (2003) Conference presentations and personal communication
Kilburn KH (1998) Chemical Brain Injury, 1st edn, Van Nostrand Reinhold, New York.
Michiels,V. & Cluydts,R. (2001) Neuropsychological functioning in chronic fatigue syndrome: a review. Acta Psychiatr.Scand., 103, 84-93.
Park,D.C., Glass,J.M., Minear,M., & Crofford,L.J. (2001) Cognitive function in fibromyalgia patients. Arthritis Rheum., 44, 2125-2133.
Tiersky,L.A., Johnson,S.K., Lange,G., Natelson,B.H., & DeLuca,J. (1997) Neuropsychology of chronic fatigue syndrome: a critical review. Journal of Clinical & Experimental Neuropsychology, 19, 560-586.
Ziem,G. & McTamney,J. (1997) Profile of patients with chemical injury and sensitivity. Environ.Health Perspect., 105 Suppl 2:417-36., 417-436.