Treating Orthostatic Intolerance in Chronic Fatigue Syndrome (ME/CFS)

Orthostatic intolerance (OI) is the inability to be vertical — sitting in a chair, or standing — without developing upleasant symptoms that improve when you lie down.

Survey data is limited but suggest that the vast majority of people with ME/CFS have orthostatic intolerance. However, many aren’t aware of it because testing isn’t done as standard, the symptoms can be hard to differentiate from other ME/CFS symptoms, and OI is much misunderstood, even among clinicians.

The simple act of rising from lying down or sitting requires a complex set of interactions involving the autonomic nervous system, blood vessels, muscle and heart to work smoothly to keep the blood from draining from out of our upper body into our lower body.

If this goes wrong, as it does in OI, not enough blood gets to the brain and the heart, and this produces symptoms. Some people feel lightheaded or dizzy or even faint immediately on standing, for example, but — importantly — others don’t. This latter group may take much longer — perhaps half an hour or more — to develop OI symptoms, but even then, may have other symptoms that force them to lie down before they feel lightheaded.

Broadly speaking, the first group have POTS (postural orthostatic tachycardia syndrome), in which standing causes an immediate, large increase in heartrate as the heart struggles to keep blood flowing to the brain and upper body; and the second group have NHM (neurally mediated hypotension), in which blood pressure drops after being upright for prolonged periods.

Dr Natelson, an ME/CFS specialist, has identified a ‘Postural Orthostatic Syndrome of Hyperventilation’ in ME/CFS patients.

OI is so common in ME/CFS that every patient ought to consider seriously whether they have it. The following pages provide more information.

Ann December 19, 2013 at 7:03 am

Just read this article and just learned that CFS is R/T orthostatic hypotension
I fainted a tilt test study (fainted in 7 minutes)
I become lightheaded everytime I stand up since age 12 but I know how to compensate.
My question is how is this R/T CFS? I have always felt as if I am more fatigued than the average person. Also feel like I have many symptoms of ADD. Lack if motivation, disorganization , absent minded. Is there a correlation?

Chris December 22, 2013 at 9:54 pm

Hi, Ann; I have commented on this in a Comment on Andrew’s good piece on the Autonomic Nervous System–read that in conjunction with Julia Newton, “Home orthostatic training in chronic fatigue syndrome-a randomized, placebo-controlled feasibility study,” 2010. I have been doing this for about 3 months or a bit more now, and it is definitely helping my OI . But be careful–heed the warnings well, particularly as you clearly are very vulnerable. And check with your doctor before trying.

Ann March 3, 2014 at 7:13 pm

My husband had a colonoscopy, in Hospital, when he was recovering,they said he could get up and dress, he fainted. Called the Crash Cart, all his vitals dropped. Took all day for his BP to come up to normal.

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