From Sociology of Health & Illness, 27 February 2017.
‘Betwixt and between'; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)
Brian Brown, Kate Huszar, Rosemary Chapman
School of Applied Social Sciences, De Montfort University, UK.
* Address for correspondence: Brian Brown, School of Applied Social Sciences, De Montfort University, Leicester LE1 9BH.
Abstract
This paper explores experiences of 16 people claiming to have recovered from Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) using the concept of liminality. Liminality describes the status of those falling between socially recognised and medically sanctioned categories, and illuminates both the experience of illness and the process of recovery from ME/CFS.
The liminality experienced during illness was akin to that described by Turner with a degree of communitas among sufferers. As recovery progressed, participants stressed the percentage to which they had improved, and compared themselves with peers and themselves prior to the illness. Recovery did not mean transition into a post-liminal phase, but involved a new liminality, characterised by straddling boundaries between illness and wellness. Participants continued strategies such as rest, pacing and meditation. This second liminal state included difficulty in communicating the experience convincingly, and estrangement from the ME/CFS community.
Thus, recoverees moved from the liminality of illness to a second, and less legible state of sustained liminality in recovery, described as having one foot in the ill world, one foot in the well world. This suggests that more needs to be understood about the recovery experience to assist those making the transition toward wellness.
From the Journal of the Neurological Sciences, 23 February 2017.
Multimodal and simultaneous assessments of brain and spinal fluid abnormalities in chronic fatigue syndrome and the effects of psychiatric comorbidity
Benjamin H Natelson(1,*), Xiangling Mao(2), Aaron J Stegner(1), Gudrun Lange(1), Diana Vu(1), Michelle Blate(1), Guoxin Kang(2), Eli Soto(3,4), Tolga Kapusuz, Dikoma C Shungu(3)
1) Department of Neurology, Mount Sinai Beth Israel, New York, NY, United States
2) Department of Radiology, Weill Cornell Medicine, New York, NY, United States
3) Department of Pain Management, Mount Sinai Beth Israel, New York, NY, United States
4) Millennium Pain Centers, Bloomington, IL, United States – current affiliation
*Corresponding author at: Pain & Fatigue Study Center, Beth Israel Medical Center, 10 Union Square East, Suite 5D, New York, NY 10003, United States.
Highlights
• As a group, CFS patients have higher brain ventricular lactate, more abnormal spinal fluid results, lower brain GSH, and reduced cerebral blood flow relative to healthy sedentary controls
• Psychiatric comorbidity does not influence any of these potential biological markers of CFS
• 50% of the patients had more than one of these abnormalities
• The subgroup of patients with brain abnormalities may have an underlying encephalopathy producing their illness
Abstract
The purpose of this study was to investigate whether CFS patients without comorbid psychiatric diagnoses differ from CFS patients with comorbid psychiatric diagnoses and healthy control subjects in neuropsychological performance, the proportion with elevated spinal fluid protein or white cell counts, cerebral blood flow (CBF), brain ventricular lactate and cortical glutathione (GSH).
The results of the study did not show any differences in any of the outcome measures
between CFS patients with and without psychiatric comorbidity, thus indicating that psychiatric status may not be an exacerbating factor in CFS.
Importantly, significant differences were found between the pooled samples of CFS compared to controls. These included lower GSH and CBF and higher ventricular lactate and rates of spinal fluid abnormalities in CFS patients compared to healthy controls.
Thirteen of 26 patients had abnormal values on two or more of these 4 brain-related variables. These findings, which replicate the results of several of our prior studies, support the presence of a number of neurobiological and spinal fluid abnormalities in CFS.
These results will lead to further investigation into objective biomarkers of the
disorder to advance the understanding of CFS.