The Hummingbirds' Foundation for M.E.

Copyright © Jodi Bassett June 2005. This version updated December 2012.  From www.hfme.org                         

The scales on this page are designed to be used by M.E. sufferers to measure improvements and changes over different aspects of their illness over time. These scales are not intended for medical use and were not created by a doctor.

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See the Downloads section below to download this paper (the original version or a modified version) in Word or PDF format.

The scales on this page are inspired in part by the scales written by Dr Bell MD, Jill Moss, and Verrillo and Gellman (in their book)

Resting: Resting means completely different things at different severity levels of illness. For the mildly ill, resting may be watching TV or sitting in a chair while reading a book or having a quiet visit with friends. For the severely ill, these activities are not at all restful and indeed would provoke severe relapses.

For the very severely ill, resting means lying down in a dark room in silence and with no sensory input at all (TV, radio or light) with zero physical movement or cognitive activity. Clothing must also be comfortable and the room must have a very moderate temperature; not too hot or too cold. When referring to resting, a better term for the very severely ill would be 'complete incapacitation.'' The term 'resting' implies that inactivity is optional; the severely ill are often 'resting' (i.e. incapacitated) because it is physically impossible for them to do anything else.

For moderately ill patients, resting lies somewhere between the above two extremes.

Resting will change according to the severity of the level of each individual.

The very severely ill have no symptom-free or safe activity limit. Concepts of pacing or of keeping activity at a level which does not cause immediate or delayed symptoms are useless. Indeed, a sizeable proportion of the very severely ill may well be so severely affected in the first place because of over-exertion in the early stages of their illness; they did not know the importance of rest, and in some cases, were not allowed to rest adequately; extremely common in M.E., this is a tragedy and an absolute disgrace.

Severe M.E. restricts life to a degree that healthy people might find hard to imagine, but patients have learned from bitter experience all about the extreme negative consequences of over-exertion. They are reminded on a weekly or even daily basis that even with careful control, limits can be misjudged or tasks can take a greater toll than expected. An M.E. patient can never be accused of being too restrictive of his activity levels; he wants to live and experience life as much as possible and has learned to use enormous discipline to avoid over-exertion.

I have never heard of anyone with M.E. who is too restrictive with their activity levels; the problem is always the opposite, if anything. It is a natural human desire to "keep going" when there are chores waiting to be completed, and for most patients, when there is a moment of feeling somewhat more 'well,' it is often less difficult to physically keep pushing themselves (even to the point of severely worsening the illness) than it is to force themselves to adequately rest. In the earlier stages of the disease (when pushing ones self for short periods is more possible) the patient also very often finds it is easier emotionally to forge ahead in physical over-exertion and suffer the dire consequences rather than stand up to extreme pressure from friends, family and medical staff for these activities to be completed at the same level as in pre-illness..

Resting endlessly for many years is much harder than one can imagine. In comparing M.E. patients to those who have suffered from strokes, it has been stated the less difficult task was learning to walk and talk again over forcing one's self to rest endlessly and have no distraction from the extreme pain.

People with M.E. would give anything to be able to work hard to improve their illness, and to be improving every day instead of staying the same or getting worse. The problem of M.E. patients under-reporting or under-estimating their ability levels just does not exist.

This is not about patients being as inactive as possible. A person with moderate M.E. of course does not need to live with the same restrictions as does someone with severe M.E. The point here is just that patients must stay within their individual post-illness limits. No more and no less than that is necessary.

Increasing the activity levels of someone with M.E. beyond their individual limits can only be harmful. Gradually increasing activity does not make any exercise easier or less damaging; it does not matter how slow it is done: it has the same harmful effects.

Overexertion: What characterises M.E. every bit as much as the individual symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on.

The main characteristics of the pattern of symptom exacerbations, relapses and disease progression etc. in M.E. include:

1. People with M.E. are unable to maintain their pre-illness activity levels. This is an acute (sudden) change. M.E. patients can only achieve 50%, or less, of their pre-illness activity levels.
2. People with M.E. are limited in how physically active they can be but are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.
3. When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.
4. The level of physical activity, cognitive exertion, sensory input or orthostatic stress that is needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient's pre-illness tolerances and abilities.
5. The severity of M.E. waxes and wanes throughout the hour/day/week and month.
6. The worsening of the illness caused by overexertion often does not peak until 24 - 72 hours (or more) later.
7. The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
8. The activity limits of M.E. are not short term; an increase in activity levels beyond a patient's individual limits, even if gradual, can only cause relapse, disease progression or death.
9. The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not caused only by overexertion; there is also a base level of illness which can be quite severe even at rest.
10. Repeated overexertion can harm the patient's chances for future improvement in M.E. Patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.
11. Not every M.E. sufferer has 'safe' activity limits within which they will not exacerbate their illness; this is not the case for very severely affected patients.

Sensory input: This includes light, noise, movement, motion, vibration, odour and touch.

Cognitive abilities: When rating cognitive abilities it is the persons intellectual capabilities which are being referred to, not their state of mental or emotional health which may or may not be at quite a different level altogether.

Symptom severity and variety: The pain and suffering of M.E. has a number of different 'flavours.' The experience can be made up of severe nausea, vertigo and disequilibrium, cold and hot fevers or feeling both very cold and very hot at the same time, feeling 'poisoned' and very ill, pain in the glands and throat, muscle pain, twitching and uncontrollable spasms, difficulty breathing and breathlessness, cardiac pain and pressure and dysfunction that feels like a heart attack, a feeling of having a heart attack in every organ (caused by lack of blood flow to these organs), sensations of pain and terrible pressure in the brain and behind the eyes, stroke-like or coma-like episodes, abdominal pain and pain/discomfort following meals, seizures and 'sensory storms' (while conscious) and, lastly, an inability to remain conscious for more than a few minutes, or hours at a time or for more than a few hours each day in total. Any one of these problems can cause severe suffering. What makes severe M.E. so terrible is that the patient is almost always dealing with a large number of these horrific problems all at once.

For more (fully referenced) information on M.E., see: What is M.E.? plusWhy patients with severe M.E. are housebound and bedbound andThe importance of avoiding overexertion in Myalgic Encephalomyelitis. See also: M.E. vs MS: Similarities and differences

Name: ____________________    Date:  __________

Circle the correct number or fill in the blank spaces below (once you've printed out this form).

This checklist refers to my abilities on (1) an average day, (2) my worst day or (3) my best day.


Average time spent upright (standing or sitting) daily: 1 2 3 4 5 6 7 8

KEY: (1) 0 - 5 mins (2) 5 -15 mins (3) 15 - 30 mins (4) 30 - 60 mins (5) 1 - 2 hrs (6) 2 - 3 hrs (7) 4 - 5 hrs (8) 6 - 7 hrs (9) 8 - 10 hrs (10) 12 + hrs

Average time spent on the computer daily: 1 2 3 4 5 6 7 8 9 10

Average time spent with another person or talking on the phone daily: 1 2 3 4 5 6 7 8 9 10

Average time spent reading daily: 1 2 3 4 5 6 7 8 9 10

Average time spent listening to music or audio books daily: 1 2 3 4 5 6 7 8 9 10

Average time spent watching TV daily: 1 2 3 4 5 6 7 8 9 10

Average amount of time a high-quality level of thinking is possible daily: 1 2 3 4 5 6 7 8 9 10

Average time spent doing housework daily: 1 2 3 4 5 6 7 8 9 10

Average time spent in a total rest state (lying in a darkened quiet room) daily: 1 2 3 4 5 6 7 8 9 10

Ability to eat and drink (ability to use utensils, chew and swallow): (1) I need to be fed entirely by tube (2) very poor (3) poor (4) average (5) good (6) almost always excellent (7) excellent, no problems at all.

Frequency of trips out of the house: (1) housebound for years now (2) housebound for many months now (3) rare (4) once every few months (5) once every 2 - 4 weeks (6) once a week (7) twice weekly (8) 3 - 4 times weekly.

Ability to bathe unassisted: 1 2 3 4 5 6 7 8

KEY: (1) a birdbath or bed bath is possible less than once a week (2) a birdbath or bed bath is possible once a week (3) a shower or bath is possible once a week so long as the task is modified in certain ways (4) a birdbath or bed bath is possible 3 - 5 times weekly (5) a daily birdbath or bed bath is possible (6) a bath or shower is possible 3 - 5 times weekly so long as the task is modified in certain ways (7) a daily bath or shower is possible so long as the task is modified in certain ways (8) a daily bath or shower is possible with no problems or restrictions.

Ability to bathe with assistance from a carer: 1 2 3 4 5 6 7 8

Average waking time: ____________ am/pm Average time sleep is initiated: ____________ am/pm.

Sleep quality and duration is: (1) appalling (2) very poor (3) poor (4) average (5) good (6) very good (7) excellent.

Sensitivity to noise, rated from 1 to 10, with 10 being extremely severe: 1 2 3 4 5 6 7 8 9 10

Sensitivity to light, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

Vertigo and balance problems, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

Pain, discomfort and physical suffering, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

Nausea, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

Sensitivity to (viewing) movement, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

Burning eye pain/blurred vision, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

General neurological problems and symptoms, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

Severity of cardiac episodes (pain/abnormal function/very low blood pressure), rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

Frequency of severe cardiac episodes, rated from 1 to 10: 1 2 3 4 5 6 7 8 9 10

On average I overexert to the point of a mild-moderate worsening of symptoms and/or adrenaline burst (a physiological difficulty caused hyperactive state): (1) every day (2) almost every day (3) every few days (4) once a week (5) once a fortnight (6) every 2 - 3 weeks (7) every 4 - 6 weeks (8) rarely (9) almost never (10) I don't do this at all anymore.

On average I overexert to the point of a moderate-severe worsening of symptoms and/or adrenaline burst (a physiological difficulty caused hyperactive state): 1 2 3 4 5 6 7 8 9 10

The main reasons I overexert myself, if I do, are (circle all that apply): (1) because I have no choice, I am not getting any of the care I need to stop my condition deteriorating (2) because I need significantly more care than I am getting (3) because I need a little bit more care than I am getting (4) because I misjudge how able I am to do certain tasks sometimes (5) because I need to do some fun things sometimes even though I am too ill for them (6) arguments and heated discussions with some family members (7) dealing with and talking to my carers (8) talking to my friends and family members (9) caring for my children/partner (10) caring for my pets/garden (11) sorting out my finances and other paperwork/responsibilities (12) getting and giving support to my fellow patients (13) because I get carried away doing fun tasks sometimes and choose to keep going longer than I should despite the consequences (14) seeking medical care or trying to ensure basic welfare (or insurance) entitlements.

My best time of day is ____________________________ and my worst is _______________________________

Overall I feel my condition is: (1) at risk of becoming fatal (2) profoundly severe (3) very severe (4) severe (5) moderate/severe (6) moderate (7) mild/moderate (8) mild (9) in an almost complete remission (10) in remission.

Overall I feel my condition is (1) worsening rapidly and terrifyingly (2) worsening slowly (3) stable (4) stable in some ways and improving slowly in some ways (5) uncertain: some parts are worse, some the same and some better (6) improving very slowly in very small ways (7) improving significantly over time (8) improving at an accelerated rate. This is occurring primarily because (leave blank if cause is unknown):

 

Suggested ways to use the HFME M.E. ability and severity scale checklist :

Print out lots of copies of the checklist, excluding this section, all at once (print on both sides of one piece of paper if possible) and fill it out once every 3 - 4 months, or when you notice a change in your condition that you want to record in some way.

Fill out the form just once each time, or fill it out twice; once for your worst day and again for your best day.

Any questions that don't apply, just leave blank, or delete from the file. You may also choose to use only the first page of the checklist. 

Use the form as is, or adjust it to better fit your own symptoms and disabilities.

When filling in the form, just neatly circle the answers that are most correct for you and fill in the spaces appropriately OR do this and also write some notes in the margins giving additional information about some or all of the questions. (For example you might note that while you're spending 15 minutes daily upright, this is making you very ill and you are doing it only because you can't get the help from a carer you need, or that while you can read for an hour daily you are limited in which types of books you can read.)

Fill in the form but also attach a sheet of lined paper to it containing your own notes about changes you have noticed in your condition since the last time you filled the form out (if you've run out of room in the brief 'additional notes' section provided).

Use this checklist together with the more general HFME 3 part M.E. ability and severity scale, as they each serve slightly different functions.

If you need the checklist to be in a bigger font, open the document in the Microsoft Word program or Open Office, and change the font size before you print, or download the large text version of the document.

Note that as the first key included in the form is designed to be used for a number of different questions (to save space) and as such, not all numbered responses will be appropriate for all questions. (It is extremely unlikely that anyone with M.E. would spend 12 hours a day cleaning or on the computer, for example.)

Copyright © Jodi Bassett, January 2009. This version updated August 2010. From www.hfme.org                            

Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and poliomyelitis (polio). Earlier names for M.E. were 'atypical multiple sclerosis' and 'atypical polio.'

Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This damage is an essential part of M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.

Myalgic Encephalomyelitis has been recognised by the World Health Organization's International Classification of Diseases since 1969 as a distinct organic neurological disease. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.

Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.

Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.

Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases that exists. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.

Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.

However, the hearts of M.E. patients barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.

This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.

If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.
M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.

Myalgic Encephalomyelitis is a long-term/lifelong neurological disease that affects more than one million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)

For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.

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