The tip of the iceberg. Why chronic fatigue is not ME by Joanne Hunt.
To most of us who live with ME, the above title is most likely stating the obvious: most people with lived experience of this illness are only too aware that chronic fatigue is not synonymous with M.E.
In contrast, I have lost count of how many times well-meaning people (without experience of M.E.) have attempted to position my experience of M.E. as what they refer to as chronic fatigue.
Often, this is accompanied by a narrative of their own personal experience of chronic fatigue alongside (unsolicited) advice as to what I can do to manage it: sunbathing, exercise, plenty of sleep, a nice holiday… All things that I personally cannot manage precisely because of the way M.E. affects me.
I am not suggesting that all people with M.E. have the same experience of this illness as I do, or manage their illness in the same way, or even refer to their illness as I do (some prefer chronic fatigue syndrome/CFS, or ME/CFS, or CFS/ME, or other terms entirely).
Although I personally prefer the term M.E. (I generally consider CFS to be reductive and misleading), I respect the diversity of experiences and perspectives within the patient community.
What I am suggesting is that, however people refer to M.E., however people experience it, chronic fatigue is not the same thing.
Chronic fatigue is a symptom, M.E. is an illness (a chronic physical health condition – though sadly still a contested one).
The distinction between a symptom and a complex chronic health condition is an important one, perhaps particularly for those who have no experience of M.E.
- You might also like to read: Covid-19, Chronic Illness and Unacknowledged Loss by Joanne Hunt | 04 May 2020
Chronic fatigue, ME and CFS
Chronic fatigue is essentially severe fatigue that persists for at least six months and may be associated with many conditions, for example cancer, lupus, rheumatoid arthritis, and depression.
M.E. is a condition that typically encompasses a multitude of symptoms, one of which is chronic fatigue. For some people with M.E., chronic fatigue will be the primary symptom and most intrusive component of their illness experience. For others, chronic fatigue may represent the tip of a very large iceberg.
One of the difficulties in trying to explain M.E. to people who have no experience of the illness is the variability of both the range of symptoms and symptom severity both ‘between-person’ (between different people with M.E.) and ‘within-person’ (how M.E. may fluctuate and change within one individual).
Such variability is further complicated by on-going debate in research and clinical practice over terminology and what such terminology represents: whether M.E. and CFS should be considered to refer to the same or distinct diagnostic entities, whether they might be conceptualised as different points on a spectrum, whether we need a new diagnostic or illness label altogether etc.
Such debate is in turn complicated by numerous case definitions, one in particular being so broad that it risks selecting otherwise healthy individuals who present with the symptom of chronic fatigue.
Some research has suggested that M.E. (conceptualised via stricter case definitions) might represent a more severely functionally impaired patient subgroup within a broader and less functionally impaired CFS patient group, although this is not conclusive.
Given such complexity and need for further clarification, it’s unsurprising that there is so much misunderstanding and confusion (both within and outside of healthcare contexts) about what it might actually mean to live with M.E.
The tip of the iceberg
I am not in any way belittling the experience of chronic fatigue – I’ve experienced this symptom for over 30 years, and it can be extremely debilitating in and of itself.
I do think though there is a risk of conflating chronic fatigue with chronic fatigue syndrome (and therefore with M.E.) in such a way that the uninitiated assume that M.E. is essentially being tired all the time.
Perhaps such assumptions are encouraged by the fact that most healthy, fit, and able-bodied people can relate to the term fatigue, thus assuming that they understand the experience of chronic fatigue and, through conflation of terminology, M.E.
This might help explain recurring accounts within the patient community of presumably well-meaning but often unsolicited – and sometimes dangerous – advice from other people on how to manage their illness.
I wish that being tired all the time was the full extent of what it means to live with this illness, but it doesn’t even represent the tip of the iceberg for me, and I recognise that some people with M.E. are still more severely affected than I am.
Being tired as a relatively healthy person is a very different experience to living with the kind of crushing, searing, ‘feeling more dead than alive’ physical and cognitive fatigue that many people with M.E. experience.
For healthy people, tiredness might actually be improved through activity and exercise, whilst many people with M.E. know only too well that any activity can potentially exacerbate symptoms and exercise can do real harm (a characteristic feature of M.E. is known as post-exertional malaise).
Furthermore, although for me chronic fatigue has been a constant and unwelcome bedfellow, it now takes somewhat of a back seat to a whole host of other disabling symptoms, listed below.
ME symptoms other than chronic fatigue
The multisystem nature of M.E. makes it difficult to compartmentalise clusters of symptoms, so I have listed symptoms as they make sense to my lived experience.
- Constant, body-wide, extreme pain: muscle pain, joint pain, headache and neck pain – but also visceral pain as noted below.
- Symptoms that I most strongly associate with autonomic, neuroendocrine and immune dysfunction: orthostatic intolerance, heart palpitations, shortness of breath, thermoregulatory dysfunction (day and night sweats, painful sensitivity to temperature changes), chills, flu-like symptoms, dizziness, nausea, circulatory problems (white, even blue and numb or tingling extremities), hypersensitivity to light and sound, sensitivity to certain chemicals and foodstuffs, fainting.
- Gastrointestinal symptoms (these deserve their own bullet-point): constant cramping, painful distension, constipation, and diarrhoea, burning and stabbing sensations.
- Frequent migraines, accompanied by acute vertigo, visual disturbances, and tinnitus.
- Sleep disturbances: primarily 25 years of insomnia (a few hours’ sleep per night is a great night for me whilst completely sleepless nights are not uncommon). The little sleep I do get is unrefreshing and interspersed with frequent waking, sometimes struggling to breathe, or choking.
- Cognitive dysfunction: poor working memory which impacts on short-term memory tasks, selective and divided attention (concentration), word-finding and organising thoughts. It takes a great deal of time and energy to write articles such as this, which I manage by writing in very small chunks interspersed by frequent rest breaks.
I experience most of the above symptoms all of the time, to a degree of severity somewhere between highly intrusive and borderline unbearable (I would describe it as simply unbearable, but I have no choice other than to bear it).
All of these symptoms increase my overall experience of chronic fatigue, but they are most definitely not the same thing as chronic fatigue.
In contrast to the widespread explicit or implicit suggestion that most people with M.E. get better (a suggestion I frequently encounter and one which lacks empirical underpinning, particularly for the more severely affected), my health has been poor since childhood and in considerable decline for many years.
- You might also like to read: Covid-19, Chronic Illness and Unacknowledged Loss by Joanne Hunt | 04 May 2020
Contested illness, contested symptoms
I also have other symptoms that I would not typically associate with M.E. – though I must stress that I am not a medical doctor – and have listed these below. Whereas most of my symptoms are exacerbated by minimum exertion, these other symptoms generally have no association with activity.
Not infrequently, such symptoms are ascribed by my healthcare professionals to M.E. (or CFS as it is usually referred to) or to ‘stress’ – mostly without physical examination or further investigation.
When I have respectfully questioned the clinical rationale behind attributing all of my symptoms to M.E. or to ‘stress’ and have requested further investigation within a number of specialities, such requests have more often than not been refused.
Such uncertainty around symptoms (with associated uncertainty of how to clinically manage M.E.) can add a good deal of psychological distress onto what is already a distressing physical illness. Some of my ‘contested’ symptoms include:
- Significant hair loss.
- Chronic urticaria.
- Period problems: severe dysmenorrhea and menorrhagia.
- Frequent acute episodes of what presents like gastroenteritis.
- Micrographia (increasingly small handwriting) – accompanied by an increasing inability to write, although I can type with some difficulty.
- A more recent and marked increase in ataxia-like symptoms, including walking into things (when I am able to walk), tripping and falling over, dropping things, fine motor control issues, almost constant blurred vision, marked slurring of speech.
- Extreme visceral pain around the liver, kidney, stomach, and intestinal areas (pain of an intensity and nature that I associate with previous experience of sepsis).
I very much doubt it is possible for a relatively healthy, fit, able-bodied person to begin to imagine what it might be like to live with these symptoms – day in, day out, year after year, for what has now for me become decades.
I often describe it as akin to living (or existing) in a completely different world to people who take basic bodily functions and day to day activity for granted.
This is compacted by the fact that, unlike many medically legitimised illnesses, M.E. typically attracts little public funding for high-quality research, very little unbiased media coverage, and scant health and social care provision, leaving many people with M.E. to manage their illness alone in the face of considerable stigma.
Some people are more mildly affected, and my account is in no way intended to undermine their experiences. Some people are so severely affected (and so severely neglected) that they will not even get the chance to tell their story.
Whole lives can be swallowed up by this illness, and I very much suspect that this is compacted by conventional ‘wisdom’ (some of which is nothing more than social myth) taking precedence over the testimony of people who live with M.E.
So, next time you encounter somebody who has M.E., do not assume that this is synonymous with being chronically fatigued. Listening to, seeking to understand, and legitimising another person’s illness experience is a gift that most people can offer to others.
It costs nothing. It is all the more precious a gift to those of us who inhabit the margins of mainstream society, and to those who are excluded altogether.
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