What's in a Name?

Source:

Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z., & Shlaes, J. (2002). Evaluating Attributions for an illness based upon the name: Chronic fatigue syndrome, myalgic encephalopathy, and Florence Nightingale Disease. American Journal of Community Psychology, 30, 133-148.

Dr. Jason’s study sent CFS patients for medical care using a variety of names for their condition. He found that different names engendered different treatment: those using a name that sounded more serious were treated more respectfully than those who used the silly name mandated by CDC.

I could’ve told him that. In 1988, shortly after I was diagnosed with CFS, another woman at church was diagnosed with MS. With one exception, our symptoms were exactly the same: the symptom where we differed was one which occurs in one disease but not the other, and is why each of us got the diagnosis we did, but her "extra" symptom was no more disabling than my "extra". Immediately, a group was organized to clean her house; when I begged off from helping because I was barely able to clean my own house, I was called "lazy". No one offered the slightest bit of help to me; the silly name of the disease indicated to them that I wasn’t really sick despite almost identical symptoms and severity.

She immediately quit her job and petitioned for lifetime alimony; I continued working as many hours as I could manage. Again, I was the one who was called "lazy". Excuuuuuuuuuse me? The one who’s working is lazy, and the one who decided to quit because working was a little difficult is nominated for sainthood? What’s the difference? Oh, yeah, she has a recognized dread disease with a medical-sounding name, and I have something with a silly name that doesn’t sound in the least disabling.

In short order, doctors and the media started abbreviating CFS to "chronic fatigue". This casual inaccuracy added to the notion that this was just a minor problem that could be overcome with a little gumption, and that no virus or disabling symptoms were involved. People who didn’t see the extreme effort put forth by patients just to get through a day at work could convince themselves I simply needed to try harder and whine less; my co-workers, who watched me nearly pass out when I stood up, stumble into walls and file cabinets, wander around the office in a fog, ask ridiculous questions like "Janice, where on my keyboard would I findthe letter P?" – they knew this wasn’t something that could be fixed by ordering me to put more effort into it, and they didn’t hear any whining. When I left the office at 5 PM, they worried whether I would make it home safely because it was so obvious that I was completely drained. I could not fake what they were seeing (and hearing from the next stall in the ladies room).

The boss who kept ordering me in the middle of the day "get in the car, Honey, I’m taking you home" thought it was obvious I didn’t belong at the office, and I was nagged that I could not continue to accept a diagnosis of "nothing wrong" when there was clearly something very wrong. He knew me to be someone who willingly worked evenings and holidays and weekends and took on extra work beyond my own; no one was ever going to convince him that I was "too lazy to work". But the people who never worked with me – people who have never been within 100 miles of me – claim to know my work ethic better than my boss, because they’ve been blinded by the disparaging name Chronic Fatigue Syndrome.

John Herd observes "The name of an illness has a profound impact upon those who suffer from it, upon how the uninformed perceive it, and upon medical research and treatment." If I were writing this blog from the perspective of an MS patient struggling to work part-time, there would be kudos in the comments for not giving in to the disability; but because I call the same collection of symptoms "CFS", commenters falsely accuse me of not working at all because they perceive CFS patients to be lazy.

Johnson says "nobody has partaken in such a zealous barrage of metaphoric lampoons since the nineteenth century days of multiple sclerosis, which was called in its early years ‘hysterical paralysis’." In other words, if I’d been writing 100 years ago from the perspective of an MS patient, the comments would be the same as they are now, accusing me of being a lazy faker and disputing any claim of objectively demonstrable abnormalities. Amazing how a little time and medical evidence changes perspectives. 100 years from now, someone will find this blog in internet archives and marvel at the ignorance shown by those who vehemently disputed the validity of a recognized neurological disease that’s as disabling as MS is now recognized to be.

Politics, Science, and the Emergence of a New Disease: The Case of Chronic Fatigue Syndrome   Jason, L.A., Richman, J.A., Friedberg, F., Wagner, L., Taylor, R., & Jordan, K.M. (1997). Politics, science, and the emergence of a new disease: The case of chronic fatigue syndrome . American Psychologist, 52, 973-983. http://www.cfs_news.org/jason.htm "This article examines this controversy by exploring how the establishment of diagnostic criteria and the design of early epidemiologic studies led to inaccurate and biased characterizations of CFS."

Therein, Dr. Jason observes "Given physician skepticism about CFS and consequent antagonism between CFS patients and the traditional medical establishment, many CFS patients have dropped out of the medical care system." One of the problems with that skepticism is that it has led to biased researchers using biased selection criteria to pollute the patient pool in research studies in order to prove what they want to believe; the result has been that patients who actually have depression are used to prove that CFS is depression.

However, despite the skeptics’ belief that CFS is simply a form of depression, Dr. Jason writes "Several studies, however, clearly differentiated CFS from depression. For instance, CFS patients show more alpha electroencephalographic activity during non-REM sleep, but this is not seen in dysthymic or major depressive disorder (Whelton, Salit, & Moldofsky, 1992). Bakheit, Behan, Dinan, Gray, and O'Keane (1992) found up-regulation of hypothalamic 5-hydroxytryptamine receptors in patients with postviral fatigue syndrome but not in those with primary depression. Lutgendorf, Klimas, Antonini, Brickman, and Fletcher (1995) found that CFS patients with greater cognitive difficulties had more abnormalities in their immune system." (Dr. Berne’s book has a two-page chart of the objective differences between CFS and depression. To those open-minded enough to consider the facts, it’s incontrovertible that CFS is not the same as depression; objective test results are vastly different, as is patients’ reaction to anti-depressant medication.)

My initial diagnosis (before CDC mandated the new name) was Post Viral Syndrome. That name makes it real clear that the sole cause was the severe virus I had in February 1987 and there’s no psychiatric explanation possible. Years later, the virus and virologist were excised from my medical records because they were inconvenient to that doctor’s desired diagnosis. He couldn’t diagnose post-divorce depression if I had the same symptoms even before I got married, so, voila, if I never had the virus, I couldn’t have post-viral symptoms. But he couldn’t rummage through my files at home to make the documents disappear that prove I’m telling the truth about my original diagnosis, and he couldn’t change the records of the specialist who confirmed my original diagnosis. And he doesn’t know me very well if he thinks that I’m so mousy that I’m afraid to get a job and afraid to speak out publicly when I see lies and injustice; that’s what I was trained for. Nor am I cowed into submission by the mere fact that he is a man. I am not awed by white coats, and I have no respect for those who think wearing one authorizes them to patronize and intimidate those who come to them for help. If I’m paying for a service, I expect the service provider to treat me with dignity, not like someone beneath contempt. (If I’d ever been as abusive to law office clients as doctors were to me, I would’ve been unemployed in an instant.)

Dr. Kevin White, Rheumatologist and Epidemiologist muses "Why do those who belittle the concept offer virtually nothing more of an argument than their own feeble versions of "common sense," while repeatedly ignoring a huge and ever-growing body of evidence supporting its legitimacy?" In the case of CFS, it goes back to the silly name, and the staunch refusal of CDC to approve a name change, or even to reinstate the old name Myalgic Encephalomyelitis, which is still in use in every other English-speaking country except this one. The commenters here offer nothing more than ad hominem attacks; they say the statements here are inaccurate but offer no facts to contradict them, and misrepresent/misquote what has been said in an attempt to bolster their baseless argument. They feel they don’t need to read the research because they already know everything they need to know.

Doctors even plead "common sense" for discrediting in CFS patients the exact same symptoms they willingly admit are typical of MS and post-polio. Their prejudice blinds them to the total illogic of stating "that’s impossible" in response to symptoms they unquestioningly accept in other diseases. The best attempt any of my doctors made when they were called on it was "well, that’s different", but then couldn’t explain how it’s different. My common sense tells me that what’s really impossible is a valid explanation for their stance that Sheila’s symptoms are normal for post-polio but mine are unimaginable, when I’m describing the same response to the same thing.

Or, for that matter, for the stance of anyone whose head is so far in the sand as to deny the existence of 5000 research studies worldwide proving irrefutably that CFS/ME has a biological origin and is absolutely not psychological in nature. Call it fakery or psychiatric all you like – the overwhelming evidence proves you wrong, and some day in the not too distant future you will be forced to eat the very words you wrote here. If it were known by any other name, you’d already be too embarrassed to dispute the facts.

 

The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd. - Bertrand Russell