Orthostatic Intolerance in ME/CFS and long COVID

Simple tests could reveal the problem and empower patients

Orthostatic Intolerance

The last couple of months have seen a plethora of studies published on long COVID symptoms that are helping to shed new light on some of the common symptoms experienced by many people living with ME/CFS.

Just recently, a stellar line-up of ME/CFS experts published a paper examining orthostatic intolerance in both long COVID and ME/CFS patients. Orthostatic intolerance is generally defined as the experience of unusual symptoms – such as dizziness or feeling faint – after standing that are relieved by reclining.

While many people experience this to a degree during normal activities, orthostatic intolerance is often more pronounced in illness states, and can result in a fast heart rate after standing (postural orthostatic tachycardia, or POTS) and/or a drop in blood pressure (orthostatic hypotension).

Scientists are trying to understand whether orthostatic intolerance or POTS affects some patients with long COVID or ME/CFS, and why.

What did they do?

The researchers used a ten-minute NASA Lean Test (NLT), asking participants to sit upright, lay down and stand up for a set period, in order to explore changes in symptoms, blood pressure, oxygen saturation levels and cognitive abnormalities. Information from the tests was sent to a smartphone-based app.

The six symptoms examined were fatigue, brain fog, light-headedness/dizziness, nausea, discomfort in the chest and/or with breathing, and pain (anywhere in the body).

Forty-two long COVID sufferers, 26 ME/CFS patients meeting the Institute of Medicine criteria and 20 healthy controls took part and were assessed at five time points: just prior to the start of the NLT (baseline), in the ninth minute of the NLT, immediately after the NLT, 2 days later and 7 days later.

What did they find?

The NLT provoked a worsening of symptoms in the long COVID and ME/CFS patient groups, but not in the healthy control subjects, and the severity of all symptoms was similar in the two patient groups, and significantly worse in the patient groups than in the controls.

In the two patient groups, particularly those with long COVID, the NLT caused a marked and progressive narrowing in the pulse pressure, as well as a worsening in all three cognitive measures of reaction time immediately following the NLT. In addition, long COVID and ME/CFS patients experienced a deterioration in their symptoms following the tests.

Orthostatic intolerance usually reflects dysfunction of the autonomic nervous system, likely slowed reaction times, and is associated with inflammation of the central nervous system in long COVID and ME/CFS.

What does this mean?

The researchers believe that a simple orthostatic stress test should be performed in doctors’ offices to assess the impact of long COVID and ME/CFS on blood pressure, balance, cognitive abilities and general health. This suggestion will come as no surprise to many ME/CFS sufferers who have long called for more research on orthostatic intolerance and a greater appreciation of the problem among health professionals.

The use of a smartphone app may also pave the way for patients to undertake the same tests at home if they can get access to pulse and blood pressure devices, which are becoming less expensive but could also be loaned to patients by their doctor.This would empower patients to monitor their own symptoms, perhaps in the same way that diabetic patients monitor blood glucose, with the data going to medical practitioners to oversee the care and management of orthostatic intolerance symptoms.

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