In Part Three of his follow-up to our July 16 webinar, Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center, responds to patients’ questions on the intersection of PEM and OI and exercise intolerance with OI. Dr. Rowe will provide answers to additional questions in the fourth installment in this blog series.
Q: Do you consider PEM to have these features—trivial trigger, delayed onset, delayed peak and inclusion of flu-like symptoms, as well as fatigue, brain fog—and to be part of OI?
A: PEM symptoms can have a relatively trivial trigger, especially in those with a more severe form of the illness. Although PEM usually begins soon after exercise, PEM symptoms have occasionally been found to begin five to seven days later. This delayed onset is less common in my clinical experience. The delayed peak is better established in the research literature, as VanNess and others have shown (Journal of Women’s Health 2010; 19: 239-44). Their work also showed that flu-like symptoms can be part of PEM, as can increased fatigue and cognitive fogginess. Orthostatic intolerance seems to be capable of triggering similar symptoms, but this has not been formally studied in as detailed a manner as has exercise in ME/CFS.
Q: If PEM is part of OI, how can ME and OI be distinguished? Haven’t some surveys shown OI to be present in as many as 96% of people with ME? OI symptoms include exercise intolerance, fatigue and problems with concentration and cognition. So what additional symptoms would lead to an “ME with OI” rather than a primary OI diagnosis? Unrefreshing sleep, for example?
A: Distinguishing between OI and ME/CFS is difficult in the absence of gold standard tests for both. Most people with ME/CFS have difficulty tolerating quiet upright posture. In our early studies of tilt table testing, all 23 with CFS felt worse during the first 45 minutes upright, regardless of whether they had hemodynamic changes that were consistent with POTS or NMH. One section from the Institute of Medicine report (pp. 109-10) is worth quoting here:
“In the non-ME/CFS literature on orthostatic intolerance, symptoms of cerebral underperfusion (for example, cognitive symptoms such as difficulty concentrating) are attributed to the circulatory dysfunction (Low et al., 2009). In the ME/CFS literature, those problems often are reported as independent symptoms. While orthostatic stress is reported to cause worse fatigue and cognitive function in those with compared with those without ME/CFS (Stewart et al., 2012; Streeten and Anderson, 1992), it is impossible to determine which component of the overall ME/CFS symptom complex is due to the circulatory disorder or to some other aspect of ME/CFS physiology. Few studies specify the postures in which people report triggering of their ME/CFS symptoms, and few distinguish orthostatic headaches or orthostatic cognitive difficulties from general causes of these symptoms. The dilemma is illustrated by the reported prevalence of symptoms by Nacul et al. (2011b): 61 percent of British adult ME/CFS patients reported intolerance of being on their feet, but 94 percent also reported memory or concentration problems, 82 percent difficulty thinking, 72 percent intolerance to exercise, 66 percent sweatiness/cold hands and feet, and 65 percent headaches. How many of these other symptoms were related to orthostatic stress is impossible to discern from the paper.”
Q: Physical conditioning and exercise seem to be a part of the treatment for OI. Is this possible for ME/CFS patients if their OI is improved by drug treatments? Does our exercise intolerance appear to be due to OI? Or are OI exercise regimes dangerous for us?
A: In our early studies, we treated the OI symptoms in ME/CFS patients if they had abnormal tilt tests. Of 23 with abnormal tilt tests, 19 agreed to begin a regimen directed at better control of their OI (such as increased salt and fluid intake, medications like fludrocortisone, beta blockers, midodrine and disopyramide). Of these, 9/19 reported a substantial improvement and 7/19 others reported feeling “somewhat better” within a month. Among those who improved, the typical sequence was that they first noted their OI was improved, and then they were able to tolerate graded exercise. These results and our experience in the 20 years since then confirm the general impression that a focus on managing orthostatic intolerance symptoms is an important part of a successful management program for ME/CFS symptoms.
As previously mentioned, graded exercise is an important part of rehabilitation in those with OI syndromes and ME/CFS. Unfortunately, in the polarized environment of ME/CFS recommendations, many who promote graded exercise alone or in combination with CBT do so without any consideration of the impact of OI. Managing OI involves reducing stress, gradually increasing exercise and avoiding excessive inactivity, all of which are components of common sense medical advice as well as components of CBT.
However, we need to be especially careful not to treat the most impaired patients in a manner that aggravates their symptoms through an arbitrary enforced exercise program. The more deconditioned patients are not going to be able to tolerate the same level of exercise as those who have a higher baseline level of function, and their care usually requires much more careful advancement of exercise, often beginning with exercise on the floor or in a recumbent position. No matter how gradually we have approached the exercise progression, I have some patients who simply could not advance their exercise level beyond a very modest point until we identified a separate biological factor interfering with progress. If we encounter patients who simply cannot tolerate repeated attempts to advance their exercise level, we do well to hunt carefully for neurological examination abnormalities and other co-morbid conditions.
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