Question – Answer
This is the second in a series of FM & ME/CFS Researchers and Expert Clinicians kindly donating their time to answer questions from patients and health practitioners. We are trying to build a greater connection between Canada’s researchers, health practitioners, and the patient community, trying to give you an opportunity to learn more about our champions.
Due to law and good medical practice, none of the experts will answer specific questions about a particular medical case.
Online with Dr. Eleanor Stein, MD FRCP(C)
Tap into Dr. Stein’s knowledge, learn from her own personal experience and years of caring for and helping FM & ME/CFS patients. Learn from her knowldege of CFS research, about the tests available, and about her efforts to educate both patients and practitioners.
Dr. Eleanor Stein, MD FRCP(C) A child and adolescent psychiatrist by training, since 2001, Dr. Stein has devoted her private practice in Calgary to patients with ME/CFS, FM, MCS and toxic exposure. She integrates her own illness experience with years of study and meetings with experts from around the world to continually innovate her diagnosis and treatment approach.
She has formed the ETeam, the first multidisciplinary team in Canada conducting integrated medical, cognitive and sensory assessments of people with ME/CFS, FM, MCS and toxic exposure. The team consists of two physicians, two psychologists, an optometrist, and an audiologist.
Dr. Stein recently organized and hosted Canada’s best attended Continuing Medical Education workshop for physicians with guest speaker Dr. Kenny De Meirleir, an author of the Canadian Consensus Guidelines for Diagnosis and Treatment of ME/CFS and co-founder of Redlabs, a lab developing tests specific to ME/CFS. Proceeds from the workshop are being used to distribute summaries of the Guidelines to Alberta’s primary care physicians.
Dr. Stein has written a paper to share her experience in diagnosing and treating Anxiety and Depression in people with ME/CFS. This paper is being translated into three other languages.
I have had M.E. for almost 20 years plus candida pretty regularly and loads of food intolerances. My neutrophil count is 110 and I have been told that the normal range is 130-300.
What can I do to raise this to nearer the normal range? I’m particularly interested as I almost died of pneumonia a couple of years ago.
Dr. Stein’s answer:
1. For a low blood count, a hematologist would be the best person to see. This can be arranged through your primary care physician.
2. The issue of Candida is best addressed with an alternative health care practitioner. Western Medicine doesn’t acknowledge chronic candida infections as a health issue except in those who are severely immunocompromised such as cancer or people with HIV. It remains a debate whether the symptoms people attribute to Candida are actually due to Candida or something else such as some other fungus, small bowel bacterial overgrowth or malabsorbtion. Some practitioners suggest a trial of mycostatin, a non absorbed, oral antifungal as a way of clarifying diagnosis. If a person’s symptoms improve with mycostatin, then it is possible that yeast was the cause of the symptoms. If there is no benefit, one should look for some other cause.
Hi Dr Stein,
Could kidney stones & associated UTI’s trigger a Chronic Fatigue like Syndrome? There is also an increased incidence of both FMS/CFS in Endometriosis, why do you think this is so?
Dr. Stein’s answer:
Any painful incident such as a car accident, fall or surgery with poorly controlled pain post op, is known to trigger Fibromyalgia. The possibility that kidney stones which are very painful leading to FM would be unusual since it is a brief pain. But it is theoretically possible since “pain often begets more pain”.
As for ME/CFS, the most common trigger is infectious eg. a bad flu that never goes away. Infection locations include both urinary tract and upper respiratory tract among the most common recurrent infections reported by people with ME/CFS.
ME/CFS seems (no large study yet to prove it) to be associated with higher prevelance of several autoimmune disorders including elevated ANA (in FM), autoimmune thyroid disease, and endometriosis (thought to be autoimmune). More research is needed to show if this connection is “statistically significant” and why such a connection may exist.
Can the presence of the low-molecular weight RNA-ase indicate with certainty that a person has CFS? I have heard mixed reports.
Dr. Stein’s answer:
Larger samples by independent labs are needed to confirm REDLABS figures. I have been told that the 37KDa/80KDa RNAse L ratio is elevated in approx 90% of people with clinical symtpoms of CFS and as few as 3% of people without CFS (but these may be family contacts). These are pretty strong numbers. Also the size of the ratio is important. A very high amount of LMW RNAse L would be more convincing than a borderline result. So far in my clinical practice I have found the test results correlate with patient illness severity. However, we don’t yet know in larger samples how many people with an elevated ratio are true positives and how many people with normal results are true negatives. This is required for the test to be used more widely and to state with confidence that the test results are “diagnostic”.
I am trying to rule out Lyme, but my Lyme results were negative and this was considered inconclusive since they were done 20 years into my illness (W. Blot and ELISA’s).
Dr. Stein’s answer:
There is a controversy about how to best diagnose Lyme disease. From what I read there are two camps. The first represented by the IDSA (Infectious Disease Society of America) does not believe chronic sequelae to lyme infection to be common. If present they recommend treatment with one month of IV antibiotics. The other camp represented by ILADS (International Lyme and Associated Disease Society) believes chronic lyme and associated tick born disease like babesia, erlichia and bartonella to represent a serious public health issue across north america. The recommend much longer courses of treatment depending upon the symptoms and test results. Presently since Health Canada is still in the process of recognizing that Lyme Disease exists in Canada I use an independent laboratory IGENEX for patient who are concerned about lyme.
Hello, in regard to the maxim “if you cannot measure the cause, at least measure the effect”, what functional capacity tests could be used practically to demonstrate the mental and physical impairments of CFS victims and differentiate them from insomniacs and sedentary malingerers?
Dr. Stein’s answer:
The Canadian Consensus Guidelines state that conventional functional capacity evauluations (FCE) which measure if a person can sit, stand, bend, lift, type etc over 1 -2 days are not valid in CFS/FM. This is because many people with these disorders can push themselves to do these tasks even if tired and the tests do not measure the after effects (ie 1 day – 1 week – 1 month after the testing). CFS/FM are not disabilities of muscle mobility or strength which is what is measured by these tests but rather disorders of immune function and autonomic function (CFS) and central nervous system pain processing function (FM). One must find tests that measure the effects of these aspects. There are research measures which reliably differentiate between groups of patients but so far none that have been brought into the mainstream to evaluate individual patients.
To date the most reliable tests of dysfunction in CFS is of cognitive function. The literature is very robust with almost all studies finding deficits of effortful processing. Because of this, I have brought together a multidisciplinary team in Calgary to measure cognitive and sensory function in people with CFS/FM/MCS and toxic exposure. Interestingly , the measurable abnormalities in these varied conditions are quite similar. It is very compelling when a person scores in the above average range for intelligence and below average in specific memory and processing speed tests. We know the person isn’t faking because they have scored high on the aspects of function not affected by CFS. If they were faking test scores would be low across the board.
Another approach being used by some but not foolproof is to measure excercise capacity (VO2 max) on a bicycle ergonometer for two days in a row. Most people with CFS score more poorly on the second day whereas healthy people and those with psychiatric disorders do not show a significant difference. Accessing this testing will depend upon one’s local doctor being able to convince the local health authority to test someone twice!
Could you offer some guidelines as to when someone with CFS should consider returning to part or full-time work?
Recently I tried to return to work on a very part-time basis, but within two or three weeks I was unable to accomplish daily housework tasks at home, including taking the time to prepare nutritious meals or wash dishes. At work I was beginning to have great difficulty concentrating, and my back was getting knotted up from trying to keep sitting up when I was too tired. I really thought 10 to 15 hours of work a week would be manageable.
Apparently the disability management doctor at work has said that it’s good for people with CFS to push themselves. This hasn’t been my experience! I would be grateful for anything you could suggest about how to discuss this issue with him as well. Thank you,
Dr. Stein’s answer:
My approach to figuring out a sustainable activity level (including whether that activity includes paid work) is as follows. Most docs in the ME/CFS field use the Karnofsky Rating Scale as adapted by Dr. David Bell (an experienced ME/CFS clincian who published this scale in his 1995 book “The Doctor’s Guide to CFS”. As you can see from the Scale (below), daily energy is measured based on what a person can accomplish in a day. I have adapted the chart slightly to consider at what energy level a person would need to return to work.
To work even 3 hours / day, one must be active for at least 6 hours per day. One must get to work and back, shop, cook, eat and bathe at a bare minimum. This requires a daily score of at least 60%. All my patients use the scale on an onoing basis to evaluate their daily energy level. When the level is at or above 60% for three months, they can consider part time work. The activity must be sustainable. If one can push oneself to be active for 8 hours in a day but within one week is flat in bed recovering, this is not considered sustainable. If energy is consistently at 70% for three months a person can consider full time work.
These guidelines presuppose the following. That the person with ME/CFS has a support person to help with household tasks and that the work hours are flexible to account for the variability in symptom levels from day to day. Furthermore, if a workplace is not well ventillated, has chemical smells, is a noisy, bright/fluorescent, busy environment, is high pressure or requires multi-tasking, people with ME/CFS may not be successful at return to work even if their energy at home is above the magic 60% mark. Heavy or repetitive tasks are poorly tolerated.
Guidelines for Measuring Energy
Karnofsky Scale adapted for use in CFS
100% Totally well; no concerns about fatigue. You can think clearly and do several things at once. You can exercise to your maximum potential without any problems.
90% Energy good but you feel fatigued after hard exercise.
80% You feel well with respect to your energy but must monitor your energy through the day. Your thinking is good but not quite clear. Tasks are easy and you can still do multiple tasks at once. You are fatigued after moderate exercise. Full time work is possible for most.
70% Your overall energy is OK but everything you do is much more difficult and your energy is easily shifted. Your thought processes are much slower and more difficult and memory is poor. Exercise tolerance is poor and any strenuous exercise will make you feel unwell while light activity is tolerable. You can achieve a full day (8 hours) of tasks, but it requires a high degree of effort. You are too tired to do anything additional such as socializing. Full time work is possible only if you do not have to do any household tasks, errands or childcare. Part time work is possible for most.
60% You are able to complete 1/2 day of tasks and feel tired during it. Your thinking and memory are poor. You must rest at some point in the day. Even with rest, there is no part of the day in which you feel normal with respect to energy or can think clearly. Part time work is possible only if hours are flexible to coincide with your energy peaks and you do not have to do any household tasks, errands or childcare.
50% Your energy only allows you to do about 3 tasks per day (2-3 hours of activity). Your energy is easily drained. Thought processes are difficult. Your exercise tolerance is poor; walking up stairs is difficult.
40% You can only perform 2 light tasks per day. Physical exercise is not tolerable. Your thought processes are very slow and your memory is poor.
30% You can only perform one light task per day, any extra physical movement makes you feel unwell. You have difficulty reading and writing.
20% You are unable to perform any daily tasks; even going to the bathroom is tiring. The most physical exertion you can manage is to sit in a chair for short periods. Emotions are very unstable and fluctuate without warning.
10% You are in bed for most of the day and you have zero tolerance for anything extra. You are frequently too exhausted to even eat.
Have you heard about a combination of 2 anti-depressants, a narcolepsy med and ritalin as a method to treat CFS? My insurer has been recommending this.
Dr. Stein’s answer:
Modafanil (alertec) is a central nervous system stimulant which promotes awake, alpha rhythm and decreases theta and delta rhthms on EEG. It’s mechanism is not clearly understood but is thought to be different from that of other stimulants. Modafanil has been approved for use in and is effective in Narcolepsy, a condition in which people cannot help falling asleep. Modafanil has been used with some success to increase daytime alertness in people with MS however a recent, doublt blind placebo controlled trial failed to find any evidence of beneift (Neurology. 2005 Apr 12;64(7):1139-43).
Since the fatigue in CFS is considered similar to that in MS it has also been tried in CFS. However recent studies have not supported the results of the early pilot studies : see for example J Psychopharmacol. 2005 Nov;19(6):647-60. In my practice modafanil is used by some patients when they really need to be alert for a day or two in a row. Modafanil in the short term can increase the perception of energy and wakefullness but usually sleep is adversely affected and benefit decreases over a matter of days to weeks. In addition, pushing oneself to do more with the benefit of a drug leads to longer term worsening of CFS. The same is true for Ritalin and Dexadrine. I have not seen any studies combining Modafanil and another stimulant.
My doctor is pushing me to try Effexor. She thinks it would give me more energy and improve my mood.
I don’t believe I’m depressed, and from what I’ve read it seems Effexor is effective for only a very few people, and some of the side effects sound downright scary. Do you find this drug effective, or would you suggest something else?
I also feel that this doctor, (who took over my previous doctor’s practice, didn’t diagnose me and doesn’t know me very well) doesn’t understand how terribly debilitating CFS is and thinks that I could really be working. In the past I’ve pushed myself to the point I was practically a zombie, and I don’t want to do that again. Do you have any advice?
Thank you for taking the time to answer our questions, and best of luck with your research.
Dr. Stein’s answer:
What follows is my clinical experience and may differ from that of others in the field. Of the antidepressants on the market, when treating a patient with ME/CFS who also has depression, Effexor (venlafaxine), Mannerix (Moclobemide) and Remeron (mirtazepine) in that order are my drugs of choice. Having said this people with ME/CFS tend to be more sensitive to all drugs and can have significant side effects with even small doses of any drug. Brain fog and hangover/day time fatigue are the most common problems. Therefore I always try to treat with as few drugs as possible and start with 1/4 – 1/2 the usual starting dose.
You have raised the issue of how to differentiate depression from ME/CFS and the problem that many physicians who feel helpless to assist their patients end up using antidepressants as a fall back position. My paper (posted on the FM-CFS Canada website) suggests some ways to differentiate between ME/CFS and depression. The literature is clear that antidepressants do not improve the core symptoms of ME/CFS. However everyone is an individual and there are cases where they unaccountably help even when the person involved does not feel depressed. This may be cases of so-called “masked depression” or may be a direct effect on energy through the noradrenaline pathway. In high doses, Effexor can raise blood pressure, it is possible this is helpful in some patients with ME/CFS. There is a big push from the makers of Effexor and the newer mixed action drug Cymbalta (duloxetine) to capture the FM market. They have published studies showing that these drugs decrease pain and increase energy. I remain unconvinced that this is more than a clever marketing ploy at the moment but I remain open minded if experience with the drugs proves different.
Ellie Stein MD FRCP(C)
Is there possibly a connection between CFS and cortisol levels?
Dr. Stein’s answer:
There is a huge literature on the HPA axis (including cortisol) in CFS. The two most published are Anthony J Cleare and Mark A Demitrack. The literature is mixed on whether an abnormality exists and if so if it is primary or secondary to the CFS.