Peter Rowe – Part Three

roweIn 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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Tags: , , , , , , , , August 6, 2015
  • Firestormm

    “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.”

    Is it possible to ask Dr Rowe what possible ‘neurological examination abnormalities and other co-morbid conditions’ might be a factor here please?

    Many thanks!

    • acacia1

      I agree with Firestorm that we need to know about ‘…what possible ‘neurological examination abnormalities and other co-morbid conditions’ might be a factor here…’
      In addition, I’d like to know the role of low blood volume in OI. This never seems to be mentioned. I have inferred evidence of low blood volume and have very bad OI, part of my ME/CFS.

  • Marcie Myers

    Excellent information. Thank you. marcie

  • Lucie

    I recovered from moderate csf to mild by drinking 2.5 litres of water every day, doing yoga breathing every second hour, and resting on my back at lunch time for about 20 min often on the floor with my thighs, hips and abdomen positioned higher than my torso. During short walks to the park, I lye down on the benches in the position described before. I avoid standing more than 5 min but if I have to, will move constantly my thighs to help pump the blood up. I did the tilt table. After 8 min wanted to stop,the change was very quick, stayed up almost 20 min but was exhausted afterwards. The neurologist saw nothing wrong in the heart, blood pressure or other things that he was measuring. But I know that something happened during the tilt. For me the test was a success in making me believe what my body is screaming: “please sit down, go slow in the morning and no too fast at night”

    • Beckie Cann

      If I drank that much water – as I used to until my doc told me to STOP – I flush out minerals, potassium, sodium, calcium, cholesterol, protein, precious energy. I suffer electrolyte deficiency, more dizziness than usual, feel worse than if I did not drink enough water. I was athlete – runner, swimmer – for several years before military vaccines destroyed me. Exercise — which was as good for my head, heart and soul as it was good for my overall health — just ate my lunch after vaccine injury. I had to teach myself not to over-exercise, not to over-exert every day as I had for 15 years when healthy. Ability to recover from CFS by any measure depends on what caused CFS. Reports: Less than 10% CFS patients improve; majority (more than 50%) progressively grow sicker to become bedfast, housebound, totally disabled, unable to work even at home. I suffer Gulf War Illness, which is a subset of CFS. So I have trouble wrapping my head around CFS patients not suffering, not deteriorating as I do. I also believe many people who claim they recovered or truly believe they “cured” never really suffered CFS at all. A myriad of other diseases / syndromes mimic CFS. The only “cure” I truly believed was the cheerleader who received ozone IV infusion right after she collapsed from flu vaccine. I received ozone treatment via IV infusion for 3 years, too. And I swear by it. Ozone treatment saved my life.

      • katspan

        Hi. I have read several of your posts. I didn’t think there was anyone who suffered as bad or for as long as I have- but you may have me beat. Were you diagnosed with POTS? Or just all the separate heart and tachacardia diseases? You mention Ozone therapy. How did it help and how does one find a doctor who will prescribe it? I, too, must take OxyContin just to be able to roll over in bed without screaming in pain. I have been bed bound now for 8 years. My older daughters give me bed baths only. I also have the ME/Fibro list of other horrible problems. However after being called a hypochondriac and told there was no such thing as CFS, ME or Fibromyalgia by so many doctors- I just gave up. I have a Pain Clinic that prescribes my Oxy, Lyrica, Klonipin, Topamax, Robaxan and several others. Years ago they refused to treat me. Instead, they prescribed a hospital Rehab physical therapy group to come to my home every day for six weeks so I could ‘see’ that physical activity would strengthen me and get me healthy. They began coming every day. They would take my pulse and B.P. at the start and end. I worked as hard as I could. After 4 days, I was in full crash. My husband explained he had to put adult diapers on me during these times and they can last 2-7 days depending on what I’ve done. The P.T. told him that they had noticed that my heart rate would begin at 55, and after a few leg lifts in bed and a few hand squeezes-my heart rate would jump to 150+! After 6 weeks of this P.T group just coming over, bathing me in bed (and watching my heart rate explode ), they informed my pain doc that physical therapy was detrimental to my health but they didn’t know why. After this, that Doctor treated my pain-but I’ve given up ever finding another doctor or any treatment that might give my life some kind of meaning. The ozone treatment you mentioned is the first thing that sounds hopeful. Please explain. Thanks!

        • Isabella Cipolla

          I am so sorry youre dealing with alot of medical conditions! I relate! I gave up after the horrid experiences Ive had with so called, ‘Experts!’ Rheumatologists seem to wave their hands in the air! How can I have been given these diagnoses, yet too many doctors don’t believe in their existence!

      • Isabella Cipolla

        Ive just had another major hit with what I still find confusing, and remain without proper medical observation and assistance with this diagnosis of CFIS! I have other comorbid conditions, including Fibromyalgia!
        When I reach out to a vast communities of those diagnosed I find we all have such variances in how we may have become ill! This alone, and the lack of providers assisting patients, and worse, not finding these two diagnosis plausible is absolutely crushing for me!
        I am sick, and like you, getting worse with ever hit; harder to recover now! This is very scary for me, as I am sure most of us stricken can relate!
        Im always questioning, especially when I am laying here in the middle of the night, once again fighting a very rough set back, what is this really? How did I truly get this? Is this something else? Is there meds or foods I must take or am eating that have a cause in this disabling condition? Any feedback is helpful!