TUC (Trades Union Congress) -
Workers' experiences of long Covid - A TUC report
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Treatment of disabled people with energy impairments
In seeking solutions to the negative experiences of people with long Covid at work it is clearly vital to ground all solutions in the lived experiences and preferences of those who have this. However it is also important to reflect on the previous experiences of disabled workers with energy impairments like fatigue. Although Covid-19 and long Covid are new, it is estimated that around 250,000 people in the UK experience chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME).
ME or CFS is a long-term, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
People with ME/CFS experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy. Not everyone will experience the same symptoms. Preliminary reports and data about long Covid symptoms and patient experiences contain many similarities to other chronic illnesses known to be associated with viral triggers, such as ME/CFS.
Workers with energy impairments have faced widespread discrimination and disbelief at work. Scepticism about the existence and extent of energy impairments like ME/CFS is widespread as highlighted in a report by Chronic Illness Inclusion which stated that“negative perceptions and misunderstandings around ‘fatigue’ and chronic illness create formidable yet unnecessary barriers to work. The widespread notion that fatigue is not a real disability stands firmly in the way of disability equality in work. Systemic disbelief of energy impairment affects disability disclosure and access to reasonable adjustments, and contributes to strained employment relations, sometimes causing unnecessary departure from the labour market.”
The parallels between workers with energy limiting impairments and long Covid are clear. Going forward it is imperative employers understand energy impairments and learn the lessons from the previous experiences of people with ME/CFS, so that appropriate reasonable adjustments are put in place for workers who have long Covid, ME/CFS or other energy limiting impairments.
Methodology
In order to better understand the experiences of workers who have, or have had, ongoing symptoms after having Covid-19, commonly known as ‘long Covid’, the TUC conducted research using a self-selecting online survey. The survey was open between 3 April and 27 May 2021 and was promoted on social media, through affiliated unions and long Covid support groups. We received 3,557 responses from people who self-reported that they had had Covid-19. Of these, 3,296 were from people who self-reported that they had long Covid.
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