Terminology and Meanings in ME
Terminology used in the [ability] scales [but which is very useful to anyone new to ME or to anyone trying to *explain* ME to others]
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 orunder–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:
- 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.
- 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.
- 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.
- 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.
- The severity of M.E. waxes and wanes throughout the hour/day/week and month.
- The worsening of the illness caused by overexertion often does not peak until 24 – 72 hours (or more) later.
- The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
- 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.
- 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.
- 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.
- 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