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2 subjective measures of incapacity in CFS

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.

 

See Also:

 

Lerner’s functional capacity measurement tool for CFS

A. Martin Lerner, MD, PC
A. Martin Lerner, MD, PC

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.

Lerner Energy Index Point Score™ Chart

Lerner Energy Index Point Score™ Chart

A Functional Capacity Measurement Tool For Chronic Fatigue Syndrome (CFS) Patients To Physicians Caring for Patients with CFS

The Energy Index Point Score (EIPS) chart provides the severity of patient fatigue. A change in EIPS level of one is a large significant change. The EIPS level is determined by agreement of physician and patient with the EIPS chart easily available for viewing at out-patient visits. As the EIPS level increases, CFS symptoms lessen and disappear.

How to use the EIPS system in four easy steps:

  1. Post the EIPS chart in examining room
  2. Ask patient to evaluate their level of activity based upon the prior two weeks
  3. Question the patient’s EIPS evaluation
  4. Record and track the EIPS level. Report every 6-12 weeks.

 

Energy Index Point Score™ – A Functional Capacity Measurement Tool for CFS Patients

0 Bed-ridden, up to bathroom only
1 Out of bed 30 – 60 minutes a day (sitting in chair is out of bed)
2 Out of bed sitting, standing, walking 1 – 2 hours per day
3 Out of bed sitting, standing, walking 2 – 4 hours per day
4 Out of bed sitting, standing, walking 4 – 6 hours per day
5 Perform with difficulty sedentary job 40 hours a week, daily naps
RECOVERY
6 Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities
7 No naps in bed. Up 7:00 a.m. to 9:00p.m. Able to work a sedentary job plus light housekeeping
8 Full sedentary workweek, no naps, some social activities plus light exercise
9 Same as 8 above plus exercise approximately 1/2 to 2/3 normal without excessive fatigue, awakens next morning refreshed
10 Normal

 

© 1998 – 2008 Dr. A. Martin Lerner CFS Treatment Center Last revised: November 2008. EIPS and Energy Index Point Score are trademarks of the Dr. A. Martin Lerner CFS Treatment Center. All rights reserved. This document may be copied for use by physicians and patients, but may not be modified, sold, or distributed promotionally in any form without express written permission. For more information visit: treatmentcenterforcfs.com
A printable version of the Lerner Energy Index Point Score Chart can be downloaded here.

 

David Bell’s CFS Disability Scale

Dr David S Bell
Dr David S Bell

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.

David Bell's CFS Disability Scale

Can be used by both patient and doctor to monitor progress/relapses of this condition

David Bell’s CFS Disability Scale

100 No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work fulltime without difficulty.
90 No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.
80 Mild symptoms at rest; symptoms worsened by exertion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with difficulty in jobs requiring exertion.
70 Mild symptoms at rest; some daily activity limitation clearly noted; overall functioning close to 90% of expected except for activities requiring exertion; able to work full-time with difficulty.
60 Mild to moderate symptoms at rest; daily activity limitation clearly noted; overall functioning 70% – 90%; unable to work full-time in jobs requiring physical labour, but able to work full-time in light activities if hours flexible.
50 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected; unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
40 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall level reduced to 50% – 70% of expected; not confined to house; unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day but requires rest periods.
30 Moderate to severe symptoms at rest; severe symptoms with any exercise; overall activity level reduced to 50% of expected; usually confined to house; unable to perform strenuous tasks; able to perform desk work 2-3 hours a day, but requires rest periods.
20 Moderate to severe symptoms at rest; severe symptoms with any exercise; overall activity level reduced to 30% – 50% of expected; unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.
10 Severe symptoms at rest; bedridden the majority of the time; no travel outside of the house; marked cognitive symptoms preventing concentration.
0 Severe symptoms on a continuous basis; bedridden constantly; unable to care for self

 

A printable version of the David Bell’s CFS Disability Scale can be downloaded here.

 

Read More

  • 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]

 

FEATURE PHOTO: xoe-sick by WindRanch

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Written by Russell Logan

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

87 posts

4 Comments

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  1. Unfortunately, the Acumen Mitochondrial function test which Dr Myhill recommends, is not validated, so meaningless to most doctors.

  2. Lerner’s EIPS® is also flawed at starting “0” with patients who can get out of bed. Where do you put those of us who are 100% bed-bound? I also wonder if this impacts the results of his studies, since it questions if he ever treated the severest patients.

    • Hi Liisa. You raise a very good point, from a few perspectives. I hope you are not 100% bed bound.

      I spend all but about 2 hours in bed, yet I don’t see myself coming close to those who are on feeding tubes or paralyzed.

      Perhaps each symptom needs its own scale. Although I have severe muscle fatigue, brain fog, processing difficulties etc, the main symptom that keeps me bed-bound is orthostatic intolerance, so I couldn’t tolerate getting around in a wheel-chair.

      As to Lerner not recognizing this type of patient in his scale, it could be that he did not know about them. In the ‘Read More’ section at the bottom of the article, Johan’s article talks about bell curves and the application of both scales to this sort of analysis. It is a fascinating observation, but a bit too technical for most patients, which is why I left it out.

      It comes back to how good our understanding of the epidemiology of the illness is. And since the definitions are so stuffed up, I suspect the epidemiology figures are are well.

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