Sally Cross explores her research on medical uncertainty in the context of fibromyalgia and ME/CFS in this collection of experimental poetry.
Introduction to poetry
In 2024, I was beginning a PhD exploring medical uncertainty in the context of fibromyalgia and ME/CFS. At the time, I was trying to understand the origins of these disabling chronic illnesses within medical research and practice. I was analysing medical texts to discern how ME, CFS and fibromyalgia emerged as clinical categories and scientific objects. While focusing on these disembodied forms of knowledge, I also wanted to reflect on and imagine the lived experiences of illness central to the history of these conditions. The dearth of experiential evidence made this difficult, so I turned to poetry. I wrote poetry that combined found text from medical documents concerning ME, CFS and fibromyalgia with fiction inspired by the lived experience of illness. The poems aim to subvert medical language, centre uncertainty and reflect a more authentic, rather than literal or empirical truth.
The first poem considers the history of ME as emergent from several unusual epidemics that occurred between 1948 and 1956, the most notable of which was an outbreak of illness at Royal Free Hospital, London, in 1955. The text in italics is taken from a report on the epidemic by physicians at Royal Free Hospital (Richardson 1956). The origin of CFS is considered in two poems. All text from ‘Chronic Fatigue Possibly Related to Epstein-Barr Virus – Nevada’, including the title, is from a report by the US Centers for Disease Control and Prevention on an outbreak of illness in Lake Tahoe, Nevada, in 1984-85 (CDC 1986). This is contrasted with a fictionalised version of events based on first-hand accounts described in the journalist Hilary Johnson’s book Osler’s Web (2006). Fibromyalgia was a renaming of the earlier diagnosis ‘fibrositis’. The first half of the poem ‘Advances in Rheumatology’ is an extract from Hans Christian Andersen’s The Princess and the Pea (Spink 1958)as cited in a paper on the clinical characteristics of ‘fibrositis syndrome’ (Rice 1986, 455). This poem contains reference to domestic violence.
SOME ASPECTS OF THE ROYAL FREE HOSPITAL EPIDEMIC
To date no infective agent has been identified
nurses toppled like dominos through the warren corridors
The onset of the disease followed an incubation period of five to seven days
focused on our ward, heads down cleaning bedpans, eyes up comfort patient
no time to look around
Most of the cases occurred in young women, but the significance of this is debatable
fatigued before the outbreak, tired of overwork and underpay
Approximately 75% of the cases developed signs of a frank neurological disturbance
dorm room spinning, blurry faces
Weeping and nightmares were not uncommon
sister sleep-talking, thrashing
no quantitative change in cell counts
every fibre shifted, knotted, taut
irritative and paralytic phenomena
wading, trudging through thick mud
examination,
poked and prodded
particularly electromyographic exploration,
needle breaking skin
was much resented because of the severe depression
no explanation
the cutaneous hyperaesthesia
of pain to touch
and the tendency for the limbs to develop spasm in response to sensory stimulation.
severe disturbance of volition
loss of power over body
Chronic Fatigue Possibly Related to Epstein-Barr Virus- Nevada
The study highlights several problems associated with the diagnosis
First,
the clinical syndrome is comprised of a wide range of nonspecific symptoms.
Second,
“elevated” anti-EBV serologic titers do not prove that a chronic illness in an individual is due to EBV.
Third,
the reproducibility of the serologic tests for EBV is poor.
Studies for other possible etiologies, are needed to
define this syndrome and provide a framework for epidemiologic and therapeutic studies.
In the meantime,
continue to search for the more definable, and possibly treatable, conditions
endocrine
autoimmune
malignancies
chronic heart,
liver,
kidney, and
pulmonary disease
anxiety
depression
chronic infectious diseases, such as
CMV, and
tuberculosis.
Once the syndrome is better defined, epidemiologic and therapeutic studies can be initiated.
Incline Village
When the days slowed
up on the mountain
and wealth sloped down
to Crystal Bay,
it was easy to feel immune
to the suffering of the body.
But a cold crystalised my body,
movements slowed,
limbs stiff, immune
to action, fossilised into the granite mountain.
Tried to keep at bay,
spiralled down.
A hundred, not coming down.
Despair, I stared out at the body,
birds cackling in the laurel, bay.
Memory fractured. Thoughts slowed.
Spreading from the mountain?
No one was immune.
Children were not immune.
Lounge-sharing teachers down-
stream from the mountain
disappeared to the student body.
Once driven by the rhythm of the bell, time slowed
when confined to the window bay.
After much howling, bay-
ing, arguing the immune
is broken, doctors could not be slowed
from afar. The disease detectives came down,
representing only their body
and became intoxicated by the mountain.
They said: weird things happen where the mountain
meets the bay.
No translation for body
language, for immune
abnormalities, felt like a clamp-down,
progress slowed.
It made a home in my disabled body, but the mountain
forgot as the patterns slowed, dissolved into the glittering bay
wealth after all was immune, sunrise, sundown
Advances in Rheumatology
“Fibrositis” Syndrome
John R. Rice, M.D
In the morning they asked her how she had slept.
“Dreadfully!” said the princess. “I hardly got a wink of sleep all night!
Goodness knows what can have been in the bed! There was something hard in
it, and now I’m just black and blue all over! It’s really dreadful!”
…Only a real princess could be so tender as that.
THE PRINCESS AND THE PEA
HANS CHRISTIAN ANDERSEN
Retreats in Feminism
Fibromyalgia
Unwritten
In the morning, at the doctor’s surgery, he asked her how she had slept.
“Dreadfully!” said the princess. “I hardly got a wink of sleep all night!”
Only I know what was in the bed. There was someone cruel in
it, and now I’m just black and blue all over! It’s really dreadful.
…Only fibromyalgia could be so tender as that.
About the Author
Sally Cross is a Research Assistant and PhD student at the Centre for the History of Science, Technology and Medicine, University of Manchester. Her PhD research is funded by the Wellcome Trust and examines medical uncertainty in the context of fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). She is finding creative writing to be essential for staying with the emotional, complex and uncertain aspects of her work. She is available for contact by email.
Reference List
CDC. 1986. ‘Chronic Fatigue Possibly Related to Epstein-Barr Virus — Nevada’. Morbidity and Mortality Weekly Report (MMWR) 35 (21): 350–52.
Johnson, Hillary. 2006. Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Lincoln, Neb: iUniverse.
Rice, John R. 1986. ‘“Fibrositis” Syndrome’. Medical Clinics of North America 70 (2): 455–68. https://doi.org/10.1016/S0025-7125(16)30963-4.
Richardson, A. T. 1956. ‘Some Aspects of the Royal Free Hospital Epidemic’. Rheumatology 3 (3): 81–89. https://doi.org/10.1093/rheumatology/III.3.81.
Spink, R. 1958. Hans Andersen’s Fairy Tales. New York: E. P. Dutton & Co. Inc.
