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Anchor lead: How many medicines can someone with chronic fatigue syndrome or severe exercise intolerance disease expect to take?  Elizabeth Tracey reports

Systemic exercise intolerance disease or SEID is the new name for chronic fatigue syndrome, and it is thought to affect between 800,000 to a couple of million people in the US alone.  Because there are a wide range of symptoms, Peter Rowe, an SEID expert at Johns Hopkins, says a range of treatments may also be needed.

Rowe: We often need to treat people with more than one medication and we call that rational polypharmacy.  For many of these patients with SEID and CFS, there’s an overlap of a lot of other comorbid conditions, and so they need to be treated and one of the effective ways to treat them is to peel each one away and keep encouraging improvement in their exercise and activity level and you see improvements over time with that approach.  :27

Rowe says for people who are already disabled and housebound by SEID, about 25% of people with the condition, multiple treatments and prolonged duration may still not bring results, pointing to the need for more research into the cause of the condition.  At Johns Hopkins, I’m Elizabeth Tracey.

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Anchor lead: There is evidence from testing to help make the diagnosis of chronic fatigue syndrome or systemic exercise intolerance disease, Elizabeth Tracey reports

If you suspect you have chronic fatigue syndrome, newly renamed SEID or systemic exercise intolerance disease, how is the diagnosis made?  Peter Rowe, an SEID expert at Johns Hopkins and one member of a recent Institute of Medicine panel on the condition, describes the criteria.

Rowe: People with CFS, when they’re tested on consecutive days using a cardiopulmonary exercise test have a drop off in their exercise capability not related to effort, and that’s very different from any other disease including just simple deconditioning.  The three main things you need to have: reduction in your activity level, post-exertional malaise and unrefreshing sleep.  In addition you can either have cognitive dysfunction or orthostatic intolerance.   :27

Orthostatic intolerance refers to someone’s inability to stand or even be seated for a long period of time. Rowe says in children and teenagers, this symptom may show up as reluctance to go to the mall, a sure sign of trouble in this population.  At Johns Hopkins, I’m Elizabeth Tracey.

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Anchor lead:  What’s behind a recent name change for chronic fatigue syndrome? Elizabeth Tracey reports

Chronic fatigue syndrome, abbreviated by some providers as CFS, has been renamed by no less an august body than the Institute of Medicine, at the request of various federal agencies.  Now abbreviated SEID, for systemic exercise intolerance disease, the hope is that more people will become aware of the condition.  Peter Rowe, an SEID expert at Johns Hopkins, who helped craft the new name, describes the reasoning.

Rowe: What are the key features of this illness?  One of them was a profound reduction in the person’s ability to do what they had done before. With that most people had what had been termed ‘post exertional malaise’ which is a bit of a cumbersome term but it refers to the fact that if you exceed your limits of activity you will get two or three days of amplification of all of your symptoms. Much worse exhaustion, terrific difficulty with cognitive fogginess, lightheadedness, pain is worse, people just feel awful.   :30

Rowe hopes the new name is more reflective of the reality of the condition.  At Johns Hopkins, I’m Elizabeth Tracey.