As an ME or CFS sufferer, how often have you had someone say to you, ‘we’re all tired, get over it’, or ‘you don’t look sick’?
Although the illness is mostly invisible, part of the problem is that some patients aren’t as sick as others, and are more active as a result.
It is poorly understood that incapacity or illness severity in ME and CFS can vary from patient to patient and can also vary over time for an individual patient.
And the range of incapacity between patients can be quite dramatic, with more severe patients — around 25% of total numbers — completely bedbound.
At the other end of the scale, sufferers may have a near normal lifestyle, though still troubled by perplexing symptoms and still requiring a measure of assistance for their disability.
Of course, variations in severity from patient to patient are observed in many illnesses, however in ME and CFS, despite a growing body of evidence of severe immune and neurological abnormalities, the political and medical focus for research and treatment is usually on those with low severity, and the illness is often trivialized.
‘ME fatigue’ is not fatigue
The description of fatigue in ME and CFS is central to most definitions of the illness, with the term often used to trivialize its impact on patients.
Some effort has been made to redress this in the International Consensus Criteria (ICC) where ME fatigue is characterized by a pathological low threshold of physical and mental fatigability, exhaustion, pain, and an abnormal exacerbation of symptoms in response to exertion. It is followed by a prolonged recovery period.
Ways to measure severity in ME and CFS
Some objective tools have been shown to accurately reflect patient incapacity, namely the 2-day Cardiopulmonary Exercise Testing and Dr Myhill’s Mitochondrial Function Profile, however these tests are not always available.
There are also several subjective measures commonly used to qualify the incapacity or severity of the illness, namely Lerner’s Energy Index Point Score™ Chart and Bell’s CFS Disability Scale.
Both scales are easy to apply, particularly for self-assessment, and they can be used to compare the effectiveness of therapies and to track health over time.
A criticism of Lerner’s index is that the scale is not linear at the 4 to 5 level, where he goes from ‘Out of bed sitting, standing, walking 4 – 6 hours per day‘ to ‘Perform with difficulty sedentary job 40 hours a week, daily naps‘, a giant leap for many patients who often transition through part-time work.
- What is ME fatigue?
- ME/CFS fatigue differs from other fatigues – Alan Light
- 2011 International Consensus Criteria (ICC)
- 2-Day CPET: A gold standard test for ME fatigue
Lerner’s functional capacity measurement tool for CFS
Dr Martin Lerner, a respected pioneer in the treatment and diagnosis of CFS, devised a scale which offers a practical means for physicians and ME/CFS patients to measure incapacity or illness severity, called the Energy Index Point Score (EIPS).
Dr Lerner’s background as an infectious disease specialist naturally led him to explore antimicrobials because he believed that microbial infections lie at the heart of ME/CFS symptomatology.
He authored numerous papers on antiviral treatments for ME/CFS, and treated patients for decades until his death in 2015.
Tap the toggle below to see the Lerner Energy Index Point Score Chart.
David Bell’s CFS Disability Scale
As mentioned above, the symptoms of ME and CFS are multi-system, so incapacity in the illness can have mental and physical components. For some sufferers, the physical is the greatest burden and for others, the mental incapacity is most troublesome.
David Bell’s CFS Disability Scale was developed by Dr David Bell as a clinically useful way to assess response to treatment by translating levels of physical and mental activity with levels of wellness.
Dr. David Bell, also a pioneer in the treatment of CFS, was involved in identifying the outbreak in Lyndonville, New York, of what was known at the time as Chronic Epstein-Barr Virus (now more commonly referred to as Chronic Fatigue Syndrome or CFS).
Tap the toggle below to Bell’s CFS Disability Scale.
- Johan, Review Of 6 ME/CFS Ability And Severity Scales, March 28, 2010, Life With ME/CFS [Blog]
- Linda & Greg Crowhurst, Supporting someone with Severe ME: Care Sheets. 2010, Stone Bird [PDF]