# Fatigue Schmatigue (on the symptom of "fatigue" in ME/CFS)



## M&M (Jan 20, 2002)

This was posted to the Co-Cure list, and I enjoyed reading it a lot. I hope you do too!************************************************ *Fatigue Schmatigue (on the symptom of "fatigue" in ME/CFS)*Fatigue SchmatigueIt's a well-known fact that pretty much everyone who has it absolutelyloathes the name 'Chronic Fatigue Syndrome,' particularly for its use of the'f' word - and for good reason. Yet when the same group of people describesthe effects of the illness in their own words, almost every one of them goeson and on about how 'fatigued' they are! It's bizarre when you think aboutit.So what does the word fatigue really mean?Fatigue: Physical or mental weariness resulting from exertion (Americanheritage 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 muscletwitchings, intense pains in the muscles and maybe joints; nausea, sweating,insomnia and nightmares; maybe elevated temperature and recurrence of sorethroat and tender, enlarged glands. (1998, p.146)Dr Paul Cheney and Dr Dan Peterson, two doctors who have specialised intreating ME/CFS patients for many years, describe the illness as 'A globaldisablement, nearly comparable to paralysis.' (Johnson 1996, p.34)Lynn Michell summarises what the ME/CFS patients she interviewed for herrecent book, said about the illness:It is as if someone has frayed the ends of every nerve in the body and leftthem raw and exposed. It brings an overwhelming need to close down sensoryinput and, for many, to retreat from everyday ordinary stressors -conversation, noise, light, movement, TV - since they are agonising to dealwith. 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 hasalso written several books on the subject), shuns the use of the wordfatigue, describing it as:A very inappropriate term for what patients experience. It's not reallyfatigue at all, which is defined as a normal recovery state from exertionand that is precisely what does NOT happen in this illness. They may saythey'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 notfatigue at all. I had the flu recently and with it I experienced quite a bitof genuine fatigue. I felt extremely relaxed and drowsy and had lots oflittle naps throughout the day, I just couldn't seem to stay awake. Itreally brought home to me the reason why there is such utter public apathyabout ME/CFS: fatigue really isn't that unpleasant! It is also not in anyway, shape or form an actual symptom of ME/CFS at all, least of all theworst one.Comparing fatigue with the symptomatology of ME/CFS is like comparing a fleato a nuclear missile or. a hedgehog to a three-storey house with an indoorpool - 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 killyou; it's absolutely nonsensical that ME/CFS, and the sensation of tirednessfelt after exertion by healthy people, could both be described using theexact 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 mainproblem must then be fatigue; a completely logical assumption to make,provided that the name was chosen in good faith (and for sound medicalreasons) in the first place. Except that it wasn't, unfortunately. In factthe manner in which this name was bestowed upon ME/CFS patients wasundeniably one of the darkest moments in medical history to date. HillaryJohnson, author of a book which documented the mid-eighties ME/CFS outbreakin the US (Osler's Web), explains that the name was selected:[By] a small group of politically motivated and/or poorly informedscientists and doctors who were vastly more concerned about cost toinsurance companies and the Social Security Administration than about publichealth. Their deliberate intention - based on the correspondence theyexchanged over a period of months - was to obfuscate the nature of thedisease by placing it in the realm of the psychiatric rather than theorganic. The harm they have caused is surely one of the greatest tragediesin the history of medicine. ... The Government's choice of names was soinept, in fact, that many observers came to view it as a deliberate effortto defuse the potentially panic-inducing issue of the eruption of alife-altering infectious disease. "CFS" after all, hardly sounded"catching". (1996, p.219)The word fatigue was used to make sufferers of the illness appear tiredinstead of ill, unable to cope psychologically with the normal pressures ofmodern life certainly, but not really any sicker than anyone else. Indeedthe terms 'fatigue' and 'chronic fatigue' were not associated with thisillness at all until the name was changed to CFS in 1988 (Hyde [online]).The ultimate goal of such word choices was undoubtedly to save theGovernment (and other organisations such as insurance companies), billionsof dollars; money saved from all the services that these groups would havebeen 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 motivationsbehind the naming of this illness, the common and seemingly logicalassumption that CFS symptoms - no matter how far they deviate from or evencompletely contradict all known definitions of the word - must still be'fatigue' because of the name, is in fact completely illogical. The 'f' wordwas selected entirely for what it could achieve politically: it was neverintended to be a genuine medical description of the symptomatology of thisillness.Maybe our readiness to use the 'f' word is also due to the fact that we (theME/CFS community) have given it our own special meaning? Because of coursewe all know that it's not just normal fatigue or tiredness that we'reexperiencing, the word fatigue is seldom used all by itself when describingthe illness to others; instead it's very quickly followed by an explanationof what we actually mean by the word. We use a word that means 'A', and thenfollow that by saying, 'but by A, what I really mean is B.' Of course peopleare always going to be left thinking that although we said B afterward, thatwhat we must really mean is A, as after all, that was the terminology thatwe used.Perhaps the biggest issue surrounding our use of the 'f' word though, isthat there is no perfect alternative word just waiting for us. ME/CFS is anextremely severe and complex multi-system illness and there just aren'twords created yet that even come close to describing its full horrors - butwe can still do better than the pathetically inadequate and politicallydamaging '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 andmyriad other disadvantages?But surely one little word hasn't caused all of the credibility problemsthat ME/CFS has?No, of course it didn't, the way the illness was re-named CFS was just abrilliant starting point. It meant that the illness was disassociated fromits previously established name (Myalgic Encephalomyelitis), from all itsprevious research and case studies (dating back to 1934) as well as itsWorld Health Organisation classification (as an organic neurologicalillness) (Quintero 2002 [Online]). This then left the path clear for theGovernment (and the other financial stakeholders) to basically re-writehistory to suit themselves, to create new definitions of the illness whichexcluded all of the cardinal symptoms of M.E. and instead focused almostentirely on 'fatigue.' It was also made a condition of the diagnosis thatthere be no observable physical signs of illness - this despite the factthat 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 todenote 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 illnesswhich is synonymous with Myalgic Encephalomyelitis. (Hooper et al. 2001[Online]) With these new 'definitions' of the illness in place, the creationof a substantial body of research to back up this manufactured psychiatricparadigm of CFS was only too simple. This pseudoscientific research -conducted primarily by the US Government as it was - was seen by a trustingpublic as being completely and unquestionably credible, this despite theabsolutely enormous holes and inconsistencies in it both scientifically (andeven just plain logically) when you looked at it close up. The problem, aswe 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 stakeholdersinvolved), in concealing the truth about ME/CFS from the public; thefoundation 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 wehave enough good solid evidence, that the medical recognition so longoverdue will somehow be forced to instantly materialise. That all thosedoctors who deny the reality of ME/CFS will have no choice in the face ofsuch rock-solid research but to concede that they were wrong. The reality isthat there is already an abundance of credible research that hasunequivocally demonstrated an organic pathology for ME/CFS; and very littlehas actually changed. But is this really so surprising? As long as the mainfeature of ME/CFS is seen to be fatigue, legitimate research into ME/CFS andthe sham science that is sponsored by financial stakeholders, will be seenas 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 offatigue. Good science alone will never be enough; we also need todisassociate the 'f' word from this illness so that the legitimate ME/CFSresearch can finally stop being so easily buried under the suffocatingweight of the inaccurate typecasts of mere 'fatigue' as is happening sooften nowMany ME/CFS patients and advocates are also (understandably) anxious to getthe name of the illness changed away from CFS before anything else. But evenif a name change (for example, in favour of Myalgic Encephalomyelitis) isachieved, will it really make any difference if those with the illnesscontinue to use the 'f' word to describe the illness, and continue to beaccepting of it's use by others? How can a name change possibly achieveanything if this also remains a 'fatiguing' illness, with everything thatthat entails?But what if just by refusing to use or accept one word we could finallystart to change things for ourselves? We may be stuck with the jargon of thename officially but we can at least stop ourselves (and those around us)from describing its absolutely horrific effects in such an utterlyridiculous way.It's as simple as talking about how ill you are, instead of how fatigued youare.If we only stopped the use of the 'f' word within the ME/CFS community andamongst our friends and family, that would be a fantastic start, and whoknows where it might lead? At the very least, by disassociating ourselveswith 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.' Thepossibilities are endless and we risk nothing by trying. It's true thatbefore fully escaping the stigma of fatigue attached to ME/CFS that wedesperately need more research funding and education campaigns, as well asdecent standardised criteria to diagnose and define the illness, as well asa name change. But no matter how you look at it, eradicating the 'f' wordhas 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 andfor once, totally within our control AND our very limited abilities! So juststop using and accepting the 'f' word.Let's see where this first step might take us.Jodi Bassett, 2005.NOTE: See www.ahummingbirdsguide.com to see an easier to understand,formatted version of this paper, or to download a copy of this paper in aprinter-friendly format, or for further information.*ME/CFS: Myalgic Encephalomyelitis and (ME equivalent) Chronic FatigueSyndrome.ReferencesBell, David S MD 1995, The Doctor's Guide to Chronic Fatigue Syndrome,Perseus Books, MassachusettsColby, Jane 1996, ME: The New Plague, Ipswitch Book Company Ltd, IpswitchHooper, 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/Medic...t%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 YorkMacintyre, Anne DR 1998, M.E. Chronic Fatigue Syndrome: A Practical Guide,Thorsons Publishers, LondonMichell, Lynn 2003, Shattered: Life with ME, Thorsons Publishers, LondonAmerican heritage dictionary, Fourth edition, 2000, Houghton MifflinCompany.Quintero, Sezar 2002, Sophisticated Investigation, or How to Disguise aDisease, [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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