Copyright © by Jodi Bassett March 2005 on ahummingbirdsguide.com
This version updated August 2007

So what does the word fatigue really mean? ‘Physical or mental weariness resulting from exertion. A feeling of excessive tiredness or lethargy, with a desire to rest, perhaps to sleep. Often it causes yawning’ (Wikipedia, 2001[Online]) (American heritage dictionary, 2000).

Compare that definition to descriptions of M.E. given by some of the worlds leading experts (and/or authors) in the field; Dr Paul Cheney and Dr Dan Peterson, two doctors who have specialised in treating M.E. patients for many years, describe the illness as ‘A global disablement, nearly comparable to paralysis.’ (Johnson 1996, p.34)

Lynn Michell summarises what the M.E. patients she interviewed for her recent book, said about the illness:

It is as if someone has frayed the ends of every nerve in the body and left them raw and exposed. It brings an overwhelming need to close down sensory input and, for many, to retreat from everyday ordinary stressors - conversation, noise, light, movement, TV - since they are agonising to deal with. Everyone said that they were not fatigued. (2003, p.24)

Dr Elizabeth Dowsett (an award-winning microbiologist with 30 years’ experience in M.E. research) comments that ‘"Fatigue" is the wrong word. Fatigue is a silly word.’ (Colby 1996, p. 167)

Dr David Bell M.D., who has specialised in treating M.E. patients for many years (and has also written several books on the subject), shuns the use of the word fatigue, describing it as:

A very inappropriate term for what patients experience. It’s not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness. They may say they’re fatigued, but what’s really restricting their activity may be pain, tremulousness or weakness - a sense that they are on the verge of collapse. That is not fatigue as we commonly think of it. (1995)

M.E. expert Byron Hyde M.D. explains that,

The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. Fatigue is immeasurable and largely indefinable. Fatigue is a normal phenomenon as well as being associated with almost all chronic disease states. Fatigue, which is simply one of the common features of healthy life and disease, neither defines M.E. nor clarifies the illness. The term ‘fatigue’ does cause disparagement to those who study this serious debilitating illness and those who suffer from it. (1992, p.18)

• These are just a few of the leading M.E .experts who have spoken out against 'fatigue' being the defining feature of M.E., click here for more, or see: Smoke and Mirrors.

It’s not only that Myalgic Encephalomyelitis is ‘more than just fatigue’ as you hear so often, the real issue that we all seem to have missed entirely – is that it’s not fatigue at all. I had the flu recently and with it I experienced quite a bit of genuine fatigue. I felt extremely relaxed and drowsy and had lots of little naps throughout the day, I just couldn’t seem to stay awake. It really brought home to me the reason why there is such utter public apathy about M.E.: fatigue really isn’t that unpleasant! It is also not in any way, shape or form the main feature of M.E. (or ICD-CFS). If only it were.

So what does define Myalgic Encephalomyelitis?

Myalgic encephalomyelitis is an acutely acquired illness initiated by a virus infection with multi system involvement 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. Central nervous system (CNS) dysfunction, and in particular, inconsistent CNS function is undoubtedly both the chief cause of disability in Myalgic Encephalomyelitis and the most critical in the definition of the entire disease process. Myalgic Encephalomyelitis also causes a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits.

M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) – and an associated injury of the immune system – by the chronic effects of a viral infection. There is also transient and/or permanent damage to many other organs and bodily systems (and so on) in M.E. M.E. affects the body systemically. What characterises M.E. every bit as much as the individual symptoms however is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the CNS) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made. The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:

1. 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.
2. 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.
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 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 - 48 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, 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.
9. 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.
10. 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.
11. 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.

The types of symptoms produced in response to certain levels of physical activity, cognitive activity, sensory stimuli or orthostatic stress may or may not vary depending on the type (and severity) of the activity or stimuli involved. But very often the types of symptoms worsened or produced by overexertion are fairly similar regardless of which exertion or input was involved. Overexertion can sometimes cause just one or two symptoms to worsen (eg. cardiac problems) but often a large cluster of symptoms are worsened. The cluster of symptoms made worse by excessive exertion or stimulus is often very similar from patient to patient, as generally it is a worsening of the most common symptoms of the illness. Patients commonly experience a combination of the following symptoms:

Profound cognitive dysfunctions (and various other neurological disturbances), muscle weakness (or paralysis), burning eye pain or burning skin, subnormal temperature or low-grade fever, sore throat or painful lymph nodes (and/or other signs of inappropriate immune system activation), faintness, weakness or vertigo, loss of co-ordination, dyspnea, an explosion of sensory phenomena (low level seizure activity), cardiac and/or blood pressure disturbances, facial pallor and/or a slack facial expression, widespread severe pain, nausea or feeling as if ‘poisoned,’ feeling cold and shivering one minute and hot and sweating the next, anxiety or even terror (as an organic part of the attack itself rather than as a reaction to it) and hypoglycaemia. Often the patient will feel an urgent need to retreat from all homeostatic pressures. The types of symptoms triggered vary widely from patient to patient, but some combination of these is common. There may also be an accompanying exacerbation of other symptoms. These symptoms often combine to create an indescribable and overwhelming experience of terrible illness that is unique to M.E, and can be profoundly incapacitating. At its most severe, the patient feels as if they are about to die.

Each of the symptoms caused or exacerbated by overexertion can be clearly articulated without difficulty whether they be; seizures, cardiac events, labile blood pressure, tachycardia, shortness of breath, muscle pain, muscle weakness or muscle paralysis, facial paralysis, black outs, flu-like symptoms, nausea, inability to speak or to understand speech, problems with memory, and so on. It makes no scientific or logical sense to subsume these very specific symptoms, and very specific and varied combinations of symptoms, under a vague and inaccurate label of mere ‘fatigue.’ To say that all of these very different and very specific – and in some cases very serious – symptoms can be accurately summarised as being a problem of mere ‘fatigue,’ ‘malaise’ or ‘exhaustion’ is absurd.

• See The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List for more information (and for a full list of references).

These descriptions are undeniably nowhere near as simple as just using the ‘f’ word (or talking about tiredness or lack of ‘energy’ or ‘stamina’) but they do have cold hard accuracy going for them! A real description of M.E. does not resemble anything that could be called ‘fatigue’ or have any similarity with being ‘tired all the time.’ Comparing ‘fatigue’ with the symptomatology of Myalgic Encephalomyelitis is like comparing a flea to a nuclear missile or… a hedgehog to a three-storey house with an indoor pool – there is no comparison. M.E. is a serious acquired illness that can severely disable or even kill you; it’s absolutely nonsensical that M.E., and the sensation of tiredness felt after exertion by healthy people, could both be described using the exact same word.

Perhaps we assume that if we have an illness that is sometimes (misleadingly and incorrectly) called ‘CFS’ that our main problem must then be fatigue; a completely logical assumption to make, provided that the name was chosen in good faith (and for sound medical reasons) in the first place. Except that it wasn’t, unfortunately. Hillary Johnson, author of a book which documented the mid-eighties M.E. outbreak in the US (Osler’s Web), explains that the name was selected:

[By] a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about cost to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine. ... The Government’s choice of names was so inept, in fact, that many observers came to view it as a deliberate effort to defuse the potentially panic-inducing issue of the eruption of a life-altering infectious disease. "CFS" after all, hardly sounded "catching". (1996, p.219)

The word fatigue was used to make sufferers of the illness appear tired instead of ill, unable to cope psychologically with the normal pressures of modern life certainly, but not really any sicker than anyone else. Indeed the terms ‘fatigue’ and ‘chronic fatigue’ were not associated with this illness at all until the name CFS was created in 1988 (Hyde [online]). The ultimate goal of such word choices was undoubtedly to save the Government (and other organisations such as insurance companies), billions of dollars; money saved from all the services that these groups would have been obliged to provide (and pay for) if this were to be seen as a ‘real’ and organic illness. (Hooper et al. 2001 [Online]) Because of the political motivations behind the naming of this illness, the common and seemingly logical assumption that our symptoms – no matter how far they deviate from or even completely contradict all known definitions of the word – must still be ‘fatigue’ because of the name, is in fact completely illogical. The ‘f’ word was selected entirely for what it could achieve politically: it was never intended to be a genuine medical description of the symptomatology of this illness.

No, of course it didn’t, the way the illness was re-branded as the fatiguing illness ‘CFS’ was just a brilliant starting point. It meant that the illness was disassociated from its previously established name (Myalgic Encephalomyelitis) and from all its previous research and case studies dating back to 1934 (Quintero 2002 [Online]). This then left the path clear for the Government (and the other financial stakeholders) to basically re-write history to suit themselves, to create new definitions of the illness which excluded all of the cardinal symptoms of M.E. and instead focused almost entirely on ‘fatigue.’ It was also made a condition of the diagnosis that there be no observable physical signs of illness – this despite the fact that such signs are always present in M.E. patients. (Hooper et al. 2001 [Online])

The way the illness was re-named and redefined (supposedly) as ‘CFS’ and branded as a psychologically based ‘fatiguing illness’ was clearly just the first stage (for the stakeholders involved), in concealing the truth about M.E. from the public; the foundation as it were.

It’s a commonly held belief (in the M.E. community) that as soon as we have enough good solid evidence, that the medical recognition so long overdue will somehow be forced to instantly materialise. That all those doctors who deny the reality of M.E. will have no choice in the face of such rock-solid research but to concede that they were wrong. The reality is that there is already an abundance of credible research that has unequivocally demonstrated an organic pathology for M.E.; and very little has actually changed. But is this really so surprising? As long as the main feature of M.E. is seen to be fatigue, legitimate research into M.E. (and ICD-CFS; as legitimate research done on M.E. patients under the name ‘CFS’ is sometimes known) and the sham science that is sponsored by financial stakeholders, will be seen as interchangeable. Then it is all too simple for all of the genuine, reputable and complex M.E. research to be ignored in favour of the easy (and inexpensive) answers that are associated with studying the symptom of fatigue. Good science alone will never be enough; we also need to disassociate the ‘f’ word from this illness so that the legitimate Myalgic Encephalomyelitis research can finally stop being so easily buried under the suffocating weight of the inaccurate typecasts of mere ‘fatigue.’

But what if just by refusing to use or accept one word we could finally start to change things for ourselves? We may be stuck with the jargon of the name officially but we can at least stop ourselves (and those around us) from describing its absolutely horrific effects in such an utterly ridiculous way.

If we only stopped the use of the ‘f’ word - and other words just like it - within the M.E. community and amongst our friends and family, that would be a fantastic start, and who knows where it might lead? At the very least, by disassociating ourselves with fatigue, perhaps it will stop every second person we meet from saying ‘Oh yeah, I think I might have that, I get really tired sometimes too.’ The possibilities are endless and we risk nothing by trying. It’s true that before fully escaping the stigma of fatigue attached to M.E. that we desperately need more research funding and education campaigns, as well as decent standardised criteria to diagnose and define the illness, as well as the name and definition of authentic Myalgic Encephalomyelitis to be renewed, as per the World Health Organisation’s International Classification of Diseases since 1969. But no matter how you look at it, eradicating the ‘f’ word has to be an integral part of obtaining all of these other objectives too.