Tag: COVID-19

COVID-19: will it change attitudes to chronic fatigue?

There are a minority of the people who have had COVID-19 who complain of on-going symptoms for weeks and months after the initial infection. Discussion forums and blogs have sprung up to describe people’s day-to-day responses to a new and strange disease, partly for mutual support, and partly to explain to others what they are experiencing. In a BMJ blog a Professor of Infectious diseases has described his own early COVID symptoms – loss of smell, tightness in the chest and severe fatigue (Garner 2020). Professor Paul Garner was then surprised to find that he did not immediately recover. Instead the symptoms went on for weeks: ‘muggy head; acutely painful calf; upset stomach; tinnitus; pins and needles; aching all over; breathlessness; dizziness; arthritis in my hands; weird sensation in the skin with synthetic materials. Gentle exercise or walking made me worse—I would feel absolutely dreadful the next day.’

He struggled with his colleagues’ and family’s suspicions of a psychological element to the on-going fatigue. He was convinced that this was not just a post-viral syndrome, but rather the disease itself. Others with COVID got in touch to say that he was not alone – they had similar stories.

However, he also received comments from people with pre-existing chronic fatigue syndrome, whose basic message was ‘now you know how we feel!’ (Harding 2020). Shattered by any exercise, doubted by health professionals who suspected a psychological element, and plagued by a plethora of vague neurological and autonomic symptoms, these people have often been crying out for months and years for someone to listen to their stories.

What happens in rehabilitation for people like this? In accordance with the evidence of the PACE trial (White et al. 2011) some physiotherapists have tried to apply Graded Exercise Programmes to people with Chronic Fatigue Syndrome, but with varying success. Some researchers (as well as the Chronic Fatigue Syndrome lobbyists) have cast doubt on the PACE trial’s findings (Matthees et al. 2016). Some other physiotherapists have investigated the qualitative experience of fatigue among people with neurological conditions such as Charcot-Marie Tooth disease, post-polio syndrome, Multiple Sclerosis and Guillain-Barre Syndrome (e.g. Ramdharry et al. 2012).

There are also published narratives by people with on-going fatigue symptoms after neurological or viral conditions (e.g. Duerden 2018). Often these reveal some discontent with rigid conventional physiotherapy approaches, and instead report their experiments outside the health service as they cope with continuing limitations.

In the aftermath of COVID post-viral syndromes will, I am sure, become more common. Physiotherapists will no doubt meet people with on-going post-viral symptoms in their clinics. Let’s make an effort to listen carefully to their stories, and to treat each person as an individual.

References:

Duerden, Nick (2018) Get Well Soon: Adventures in Alternative Healthcare, London, Bloomsbury

Garner P (2020) https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-protracted-illness-need-help-to-understand-and-cope-with-the-constantly-shifting-bizarre-symptoms/

Harding L (2020) ‘Weird as hell’ The Guardian, 5 May 2020  https://www.theguardian.com/world/2020/may/15/weird-hell-professor-advent-calendar-covid-19-symptoms-paul-garner#maincontent

Matthees A, Kindlon T, Maryhew C, Stark P, Levin B (2016) A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf

Ramdharry GM et al. (2012) Exploring the experience of fatigue in people with Charcot-Marie Tooth disease, Neuromuscular Disorders 22: S208–S213

White PD et al. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial The Lancet 377(9768): 823-836

PPE and communication

COVID-19 has changed interpersonal interactions – every person we meet is a possible vector of infection, and hence the new technology of ‘social distancing’, ‘facial coverings’ and PPE. But these precautions have their own consequences in altering interpersonal communication. Masks make our spoken language indistinct, and also obscure our facial expressions. Those who are deaf or hard of hearing are already missing the assistance of lip-reading. So perhaps we need to revisit communication skills with our physiotherapy students.

Illness narratives abound with stories of clinicians’ body language – its importance where language is not possible, and even its truth compared with wordy deceit.

Memoirs about and by people with aphasia and language problems show that aphasics seem to become more alive to body language and the meaning that lies behind facial expressions. John Hale was already an excellent actor and mimic before stroke abolished his language, but his wife Sheila observed how much more sensitive he became after his stroke to gesture and tone of voice. ‘Those with reduced comprehension of language are able to understand the gist of what is being said, and quickly become extremely sensitive to tone of voice and body language’ (Hale 2003 p.160). In John Hale’s case his inability to access language with others seemed to create a more direct form of emotional connection. ‘There is something about his eyes and voice and body language that seems to speak more directly to their hearts than all the words with which he charmed and taught throughout his speaking life’ (Hale 2003 p.220).

The temptation for those with language is to assume that those without have a severe cognitive disability. And that assumption is evident in tone of voice and body movements, as much as in the words we use. Douglas Ritchie tells of how enraged he was by a nurse who spoke to him in childish language. He also reports how the doctor examined him as he was about to leave the acute hospital: ‘he looked at me rather curiously and then with a nod, as benign as mine was fierce, said, ‘That’s right, that’s right.’ I refused to look at him any more, and the doctor, not noticing or, as I thought, assuming that I was as mad or as simple as he considered me to be, talked to my wife….’ (Ritchie 1974 p.49).

Jean-Dominique Bauby’s locked-in syndrome made communication with words very difficult. Many of his carers were unwilling to use his painstaking method of communication through eye-blinks and alphabet recitation. He makes some very caustic comments about lazy health professionals, such as the ophthalmologist who comes to tape one of his eyes: ‘I fired off a series of questioning signals with my working eye, but this man – who spent his days peering into people’s pupils – was apparently unable to interpret a simple look. He was the very model of the couldn’t-care-less doctor, arrogant, brusque, sarcastic…’ (Bauby 1997 p.61).

Mismatch between words and body language is the theme of Oliver Sack’s ‘The President’s Speech’, one of the vignettes in The Man Who Mistook His Wife for a Hat. The aphasic patients found the politician’s artificial body language and gestures laughable, although those not verbally challenged might not notice the mismatch, diverted as we are to the meaning of the words. Sacks went on to say “that one cannot lie to an aphasiac. He cannot grasp your words, and so cannot be deceived by them; but what he grasps he grasps with infallible precision, namely the expression that goes with the words, that total, spontaneous, involuntary expressiveness which can never be simulated or faked, as words alone can, all too easily.” (Sacks 1985)

Perhaps we should start miming classes for our students – essential clinical skills in the era of COVID-19.

References:

Bauby, Jean-Dominique (1997) The Diving-Bell and the Butterfly (translated by Jeremy Leggatt), London, Fourth Estate

Hale, Sheila (2003) The Man Who Lost His Language, London, Penguin

Ritchie, Douglas (first pub. 1960, 2nd ed. 1974) Stroke: A Diary of Recovery, London, Faber and Faber

Sacks, Oliver (1985) ‘The President’s Speech’ in The Man Who Mistook His Wife For A Hat, London, Picador

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