Things I’m Missing Out On (A Few Words About Myalgic Encephalomyelitis and Loss)

By KM Dunn

12 singing Santa Baby with my mother:

two socialists and a tangle of lights,

our voices glinting like baubles

11 chilly morning air, crisp as an apple

      in my lungs and the crunch of

     autumn underneath my feet

10 singed scent of candleflame

     in turnip lanterns and laughter

     of the children I can’t have

9    a rainy afternoon on the sofa,

     library books and a mug of tea,

     fingers turning page after page

8    sheen of sunscreen all summer

     long – skin cancer’s less of a

     risk if you can’t go outdoors

7    my granny’s birthday lunch;

     she’s gone now and I was too

     ill to visit her in the hospital

6    marching, a proud bisexual

     in the glittering critical mass

     clamouring for trans rights

5    cherry blossom in the city –

     even the drains filled

     to spilling with candy pink

4    the quick pizzicato gambol-

     scramble of lambs, racing

     at dusk in the fields

3   Tracy Chapman on the radio,

     sizzle of leeks in the saucepan

     and a pot of soup on the way

2   snowdrops and crocuses

     and winter branches waiting

     to burst into life

1   fireworks, the clink of glasses,

     a slick of red lipstick and

     the chance of a midnight kiss

Scientific Statement

Myalgic Encephalomyelitis (ME) ‘is a complex, debilitating, multisystem disease that is characterized by profound fatigue and an inability to withstand certain forms of physiological insult (e.g., physical and cognitive exertion) without symptom exacerbation’ (Nunes et al., 2023). ME involves ‘neuroinflammation, severe fatigue, excessive post-exertional exhaustion, disturbed sleep, flu-like episodes, cognitive problems, sensory hypersensitivity, muscle and joint pain, headache, bowel symptoms, and severe impairment of daily functioning’ (Proal & Marshall, 2018).

Nunes et al. (2023) highlight ‘platelet hyperactivation, anomalous clotting, a procoagulant phenotype, and endothelial dysfunction’ in ME, while van Campen et al. (2020) connect the prevalence of orthostatic intolerance in the disease to ‘a clinically significant reduction in cerebral blood flow’. It is estimated that 25% of ME patients are disabled to such a degree that they are housebound or bedbound (Chang et al., 2021) and ‘unable to perform basic tasks of work or daily living’ (Proal & Marshall, 2018).

Bibliography

Chang, C.-J., Hung, L.-Y., Kogelnik, A. M., Kaufman, D., Aiyar, R. S., Chu, A. M., Wilhelmy, J., Li, P., Tannenbaum, L., Xiao, W., & Davis, R. W. (2021). A comprehensive examination of severely ill ME/CFS patients. Healthcare, 9(10), Article 1290. https://doi.org/10.3390/healthcare9101290

Nunes, J. M., Kell, D. B., & Pretorius, E. (2023). Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses. Blood Reviews, 60, Article 101075. https://doi.org/10.1016/j.blre.2023.101075

Proal, A., & Marshall, T. (2018). Myalgic encephalomyelitis/chronic fatigue syndrome in the era of the human microbiome: Persistent pathogens drive chronic symptoms by interfering with host metabolism, gene expression, and immunity. Frontiers in Pediatrics, 6, Article 373. https://doi.org/10.3389/fped.2018.00373

van Campen, C. M. C., Verheugt, F. W. A., Rowe, P. C., & Visser, F. C. (2020). Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: A quantitative, controlled study using Doppler echography. Clinical Neurophysiology Practice, 5, 50–58. https://doi.org/10.1016/j.cnp.2020.01.003