FATIGUE SCHMATIGUE

It's a well-known fact that pretty much everyone who has it absolutely loathes the name 'Chronic Fatigue Syndrome,' particularly for its use of the 'f' word - and for good reason. Yet when the same group of people describes the effects of the illness in their own words, almost every one of them goes on and on about how 'fatigued' they are! It's bizarre when you think about it.

So what does the word fatigue really mean?

Fatigue: Physical or mental weariness resulting from exertion (American heritage dictionary, 2000). A feeling of excessive tiredness or lethargy, with a desire to rest, perhaps to sleep. Often it causes yawning (Wikipedia, 2001[Online]).

Compare that definition to descriptions of CFS (otherwise known as ME/CFS*) given by some of the worlds leading experts (and/or authors) in the field; Dr. Anne Macintyre (in her book on the illness), describes ME/CFS as:

Feeling horribly ill, collapsed, as though poisoned, with visible muscle twitchings, intense pains in the muscles and maybe joints; nausea, sweating, insomnia and nightmares; maybe elevated temperature and recurrence of sore throat and tender, enlarged glands. (1998, p.146)

Dr Paul Cheney and Dr Dan Peterson, two doctors who have specialised in treating ME/CFS patients for many years, describe the illness as 'A global disablement, nearly comparable to paralysis.' (Johnson 1996, p.34)

Lynn Michell summarises what the ME/CFS 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 ME/CFS research) comments that '"Fatigue" is the wrong word. Fatigue is a silly word.' (Colby 1996, p. 167)

Dr David Bell M.D., who specialises in treating ME/CFS patients (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)

It's not only that ME/CFS 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 ME/CFS: fatigue really isn't that unpleasant! It is also not in any way, shape or form an actual symptom of ME/CFS at all, least of all the worst one.

Comparing fatigue with the symptomatology of ME/CFS 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. Tiredness is a normal part of everyday life. ME/CFS is a serious acquired illness that can severely disable or even kill you; it's absolutely nonsensical that ME/CFS, and the sensation of tiredness felt after exertion by healthy people, could both be described using the exact same word.

So why do we use the 'f' word so often if it's so inaccurate?

Perhaps we assume that if we have an illness 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. In fact the manner in which this name was bestowed upon ME/CFS patients was undeniably one of the darkest moments in medical history to date. Hillary Johnson, author of a book which documented the mid-eighties ME/CFS 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 was changed to CFS 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' illness. (Hooper et al. 2001 [Online]) Because of the political motivations behind the naming of this illness, the common and seemingly logical assumption that CFS 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.

Maybe our readiness to use the 'f' word is also due to the fact that we (the ME/CFS community) have given it our own special meaning? Because of course we all know that it's not just normal fatigue or tiredness that we're experiencing, the word fatigue is seldom used all by itself when describing the illness to others; instead it's very quickly followed by an explanation of what we actually mean by the word. We use a word that means 'A', and then follow that by saying, 'but by A, what I really mean is B.' Of course people are always going to be left thinking that although we said B afterward, that what we must really mean is A, as after all, that was the terminology that we used.

Perhaps the biggest issue surrounding our use of the 'f' word though, is that there is no perfect alternative word just waiting for us. ME/CFS is an extremely severe and complex multi-system illness and there just aren't words created yet that even come close to describing its full horrors - but we can still do better than the pathetically inadequate and politically damaging 'f' word. It is undeniable that the word fatigue is easier to use, in comparison to listing all of one's individual symptoms and sensations, but surely its mere ease of use can not make up for its utter inaccuracy and myriad other disadvantages?

But surely one little word hasn't caused all of the credibility problems that ME/CFS has?

No, of course it didn't, the way the illness was re-named CFS was just a brilliant starting point. It meant that the illness was disassociated from its previously established name (Myalgic Encephalomyelitis), from all its previous research and case studies (dating back to 1934) as well as its World Health Organisation classification (as an organic neurological illness) (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 effect of such diagnostic criteria was that the name CFS soon came to denote both a behavioural (psychiatric) disorder involving 'chronic fatigue' with no physical signs which is perpetuated by aberrant 'illness beliefs' and 'personality,' as well as a severe and debilitating organic illness which is synonymous with Myalgic Encephalomyelitis. (Hooper et al. 2001 [Online]) With these new 'definitions' of the illness in place, the creation of a substantial body of research to back up this manufactured psychiatric paradigm of CFS was only too simple. This pseudoscientific research - conducted primarily by the US Government as it was - was seen by a trusting public as being completely and unquestionably credible, this despite the absolutely enormous holes and inconsistencies in it both scientifically (and even just plain logically) when you looked at it close up. The problem, as we all know, is that almost nobody ever did.

The way the illness was re-named CFS and branded as a psychological 'fatiguing illness' was clearly just the first stage (for the stakeholders involved), in concealing the truth about ME/CFS from the public; the foundation as it were.

But who says that WE can't use words as weapons too?

It's a commonly held belief (in the ME/CFS 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 ME/CFS 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 ME/CFS; and very little has actually changed. But is this really so surprising? As long as the main feature of ME/CFS is seen to be fatigue, legitimate research into ME/CFS 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 ME/CFS 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 ME/CFS research can finally stop being so easily buried under the suffocating weight of the inaccurate typecasts of mere 'fatigue' as is happening so often now

Many ME/CFS patients and advocates are also (understandably) anxious to get the name of the illness changed away from CFS before anything else. But even if a name change (for example, in favour of Myalgic Encephalomyelitis) is achieved, will it really make any difference if those with the illness continue to use the 'f' word to describe the illness, and continue to be accepting of it's use by others? How can a name change possibly achieve anything if this also remains a 'fatiguing' illness, with everything that that entails?

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.

It's as simple as talking about how ill you are, instead of how fatigued you are.

If we only stopped the use of the 'f' word within the ME/CFS 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 ME/CFS 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 a name change. 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.

Every journey must begin with one step, and this first step is so simple and for once, totally within our control AND our very limited abilities! So just stop using and accepting the 'f' word.

Let's see where this first step might take us.

Jodi Bassett

NOTE: See http://www.ahummingbirdsguide.com to see an easier to understand, formatted version of this paper, or to download a copy of this paper in a printer-friendly format, or for further information.

*ME/CFS: Myalgic Encephalomyelitis and (ME equivalent) Chronic Fatigue Syndrome.

References

Bell, David S MD 1995, The Doctor's Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts

Colby, Jane 1996, ME: The New Plague, Ipswich Book Company Ltd, Ipswich

Hooper, M. Marshall E.P. & Williams, M. 2001, What is ME? What is CFS? Information for Clinicians and Lawyers, [Online], Available:

http://www.25megroup.org/Information/Medical/what%20is%20me.htm

Hyde, Malcolm M.D. The Nightingale Foundation, [Online], Available:

http://www.nightingale.ca/index.shtml

Johnson, Hillary 1996, Osler's Web, Crown Publishers, New York

Macintyre, Anne DR 1998, M.E. Chronic Fatigue Syndrome: A Practical Guide, Thorsons Publishers, London

Michell, Lynn 2003, Shattered: Life with ME, Thorsons Publishers, London

American heritage dictionary, Fourth edition, 2000, Houghton Mifflin Company.

Quintero, Sezar 2002, Sophisticated Investigation, or How to Disguise a Disease, [Online], Available:

http://www.geocities.com/sezar99q/

Wikipedia: the free encyclopaedia 2001, Wikimedia Foundation, Inc. [Online], Available:

http://en.wikipedia.org

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