A Hummingbirds Guide to M.E. :: Information on Myalgic Encephalomyelitis

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If not 'fatigue' then...what?

If not fatigue then....what? This paper discusses alternate terminology and correct descriptions of M.E. which do not rely on inaccurate and misleading and politically harmful terms such as 'fatigue' or 'malaise' or 'no energy' or 'exhaustion' as explained previously in Fatigue Schmatigue and Energy Schmenergy and Myalgic Encephalomyelitis is not fatigue, or 'CFS'

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If not 'fatigue' then... what?

Okay so you’ve read Fatigue Schmatigue (and Energy Schmenergy and Myalgic Encephalomyelitis is not fatigue, or 'CFS') and are determined not to use the words ‘fatigue,’ ‘no energy’ or ‘exhaustion’ to describe M.E. ever again. So what do you replace them with? Well that's up to you, but basically ANY real description! Anything that isn't about fatigue, or energy or exhaustion and IS instead about being seriously ill and the actual symptoms and pathology of M.E.

I think one of the easiest ways to go about it is to say that you are 'ill' instead of fatigued, it's a much more accurate word as truly it is illness that prevents us from doing as much as we would like, not a lack of mere energy or fatigue. It also leaves the way open for the person to then ask you "ill in what way?" and then you can list your most severe symptoms if you think they really want to hear them...

Or else you could explain that you have a neurological illness which also affects almost all the different systems in your body. That you have a neurological illness which also causes cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal problems. (if you can remember all that!)
Or you could tell people simply that you have M.E., an illness that is a cross between polio, multiple sclerosis and Lupus.
Or that you have an illness which means that your body cannot complete all the bodily processes necessary for you to be able to do as many things as you'd like.
Or that when you do any form of exercise beyond your limits, your body has a severe post-exertional response and there is a worsening of all your symptoms. Tell people your illness is all about exercise intolerance. Tell them it is very serious and can sometimes be FATAL. Tell them it is about cardiac insufficiency.
Or you could explain that your cells aren’t functioning properly which means all your muscles and organs also aren’t functioning properly and that this means you are severely limited in how physically active you can be and even how much you can do intellectual tasks. Add that doing too much makes you very ill and that sometimes this is immediate but sometimes there is a delay of several days until the relapse hits.
Or you could just talk about whichever symptom or group of symptoms is causing you the most trouble that day.
Or you could explain that "the correct name for my illness is Myalgic Encephalomyelitis. It was named M.E. in 1956. It is not at all the same thing as ‘CFS’ and my symptoms are actually..."
Or you could even use terms like ‘I feel half dead’ or ‘I am too dead to do that today’ etc. instead of talking about mere fatigue or energy.
Or you could explain that:

Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.) The CNS is diffusely injured at several levels, these include the cortex, the limbic system, the basal ganglia, the hypothalamus and areas of the spinal cord and its appendages. Myalgic Encephalomyelitis causes a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits.

M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.

Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or months or longer. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E. The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:

People with M.E. are unable to maintain their pre-illness activity levels. This is an acute change; M.E. patients can only achieve 50%, or less, of their pre-illness activity levels post-M.E.
People with M.E. are limited in how physically active they can be but they 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 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 - 48 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, a gradual (or sudden) increase in activity levels beyond a patient’s individual limits can only cause relapse, disease progression or death in patients with M.E.
The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not just caused by overexertion, there is also a base level of illness which can be quite severe even at rest.
Repeated overexertion can harm your chances for future improvement in M.E. 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 the very severely affected.

M.E. is not stable from one hour, day, week or month to the next. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E.

You really might have to have that one written down of course! (See below for details)

It might feel awkward to begin with, but when you've tried it out a few times and come up with a description that works for you and that you can remember, it will soon become second nature. Write it down on something to begin with if you have to!

You may well be surprised by how much more positive and sympathetic the responses you receive are when you talk about real debilitating symptoms instead of mere ‘fatigue’ or ‘low energy’ (which almost everyone thinks they have just as bad too – except they assume they must just cope with it better than you and that you are mentally weak somehow! As if! As if you don’t have to learn how to be stronger than almost anyone just to get through each day with M.E.). Let healthy people try and say they also get occasional paralysis, tremors, orthostatic intolerance or seizures! (or whatever other symptoms you have).

Really educating yourself (and then others) about Myalgic Encephalomyelitis (and the difference between M.E. and ‘CFS’) doesn't hurt either. If you ever get a bad reaction from anyone (not just about not using the 'f' word but about the whole M.E. topic generally) when you tell them about your illness, there is nothing better than having lots and lots of hard facts at hand to immediately prove them wrong! I'd highly recommend it.

What is ME?, ME: The Medical Facts and The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List are all available in 2 page summaries that you can print out on a single sheet (double-sided) for easy distribution anywhere, anytime. Why not keep a few copies in your wallet, bag, bedside table or glove-box so you are always prepared and never left having to explain the whole complex thing off the top of your head?

More importantly, doing this may also ensure you are also never left having to just put up with some ignorant person spouting offensive absolute nonsense about an illness they know NOTHING about. We have enough to cope with having M.E. without having to put up with that sort of hurtful abuse.

Definitely worth a try at least! Best of luck!