Ignored, marginalized, disbelieved: this is Long Covid

Photo by Aditya Romansa, courtesy of unsplash

There is now some recognition that Long Covid exists in adults and 14 January 2021 saw the first parliamentary debate on Long Covid. It is an ill-defined, lengthy, illness associated with Covid-19. Long Covid has been identified as post Covid -19 syndrome by the UK National Institute for Health and care excellence (NICE). The 14 January debate was the first step in encouraging people with Long Covid that they are not forgotten or left behind.

And the momentum for change has started thanks to 36 MPs. Today, 26 January, 36 cross-party MPs and peers signed a letter to Boris Johnson urging the PM to launch a national register to count and publish the number of people living with Long Covid in the UK on a daily basis.

The letter, from Layla Moran MP, chair of the All-Party  Parliamentary Group (APPG) on coronavirus, says that since the outset of the pandemic, the government has focused ‘almost exclusively’ on fatal cases or those requiring hospitalisation – adding that since the APPG’s first evidence session on Long Covid last August, “it has been clear that many more lives have been limited by the long-term effects of Covid-19”.

Moran mentions that the House of Commons recently held its first debate on Long Covid, adding, “The stories we heard from MPs of their constituents were heart-breaking and eye-opening in equal measure. Colleagues on all sides agreed that more needs to be done.”

 “Many of those who are living with Long Covid are frontline workers keeping the country going during local and national lockdowns, including NHS and social care staff.”

 The letter outlines five considerations for the Prime Minister:

 1. Launching a national Long Covid register to count and publish the number of people living with the illness in the UK on a daily basis, as is routinely done with positive cases, hospital admissions and deaths due to Covid-19. As part of this, the UK government should also establish patient registers based on universal case definitions that ensure there is no widening of inequalities based on variation in clinical practice, and that no one is left behind.

 2. Recognising Long Covid as an occupational disease and set up a compensation scheme for frontline workers. This scheme should go beyond existing sick pay schemes and should be specific to those living with Long Covid. Such a scheme should be comparable to the Armed Forces Compensation Scheme (AFCS) and should recognise the relapsing nature of the disease.

 3. Ensuring that the treatment and prevention of Long Covid is a central consideration of the UK government’s overall strategy for the next few months, acknowledging that failing to sufficiently suppress cases before easing restrictions will lead to an avoidable number of Long Covid cases, further pressuring our NHS and communities.

 4. Increasing research funding for the study of the long-term effects of Covid-19 on people’s health, including those who were never hospitalised or tested, and introduce research into the efficacy of Long Covid clinics as they continue to roll out.

 5. Developing Long Covid guidelines for employers similar to NICE and SIGN guidelines and ensure the welfare system is not unfairly excluding those who cannot work due to living with the disease.

Not yet recognized, is the possibility of Long Covid in children. The evidence is starting to come in. Today the APPG on coronavirus held a live evidence session on the effects of Long Covid in children.

 The cross-party group of MPs heard from a number of witnesses including Sammie McFarland, from Dorchester, Dorset. Sammie and her daughter have been ill with Covid-19 for over 10 months. Sammie is the founder of Long Covid Kids

Another witness was Frances Simpson, from North Yorkshire. The mother of two, Frances, has Long Covid and is a founder member of campaign group LongCovidSOS.

The evidence given was compelling and heart wrenching. It showed a lack of belief from some people, sadly including teachers and health care professionals. Schools ask for proof of the illness but of course, there isn’t any. What do parents do with a new illness? Sometimes the illness was severe enough for hospital admission, although once blood tests were negative the parents’ concern might be dismissed. Interestingly, a child’s Long Covid usually occurs with Long Covid in a parent.

Counting Long Covid in Children, written by Frances Simpson (witness for the cross party group of MPs) and Amali Lokugamage (a consultant in obstetrics and gynaecology) is published in the October issue of the British Medical Journal online.

Frances Simpson, a mother of two children who have been experiencing symptoms for almost seven months, has met many other parents whose children have had Covid-19. The authors say “Existing research shows that children have generally been found to have less severe Covid-19, but there is concern among campaigners that paediatric Long Covid has received much less attention. Many of the parents in online support groups share this concern, describing their fear at the strange and fluctuating symptoms experienced by their children, their frustration at the lack of medical care, and their struggles to be believed.”

Simpson and Lokugamage say “Parents reported that their children experienced fatigue, general gastrointestinal issues, sore throats, headaches, and muscle pain, or weakness. Other symptoms included fevers, nausea, mood changes, rashes, dizziness, breathing difficulties, and cognitive blunting. The findings of this very informal patient-led survey demonstrate that there is a need for further epidemiological data collection, in order to quantify and qualify the existence of Long Covid in children. There is also a need for research into pathophysiology of these symptoms as is being currently investigated in adult cohorts.”

Further reports of Long Covid are emerging. The January edition of Acta Pediatrica contains the Swedish publication by Jonas F. Ludvigsson “Case report and systematic review suggest that children may experience similar long-term effects to adults after clinical Covid-19”.

The symptoms in the published Swedish paper are the same as those reported in today’s evidence to MPs. Parents, this is not an imaginary illness in your children. It is a new illness.

Towards the end of the APPG on Coronavirus live evidence session on the effects of Long Covid in children Lord Strasburger said “This is a national emergency… You’ve been ignored, you’ve been marginalized, you’ve been disbelieved, you’ve not been offered any treatment.. you’ve not been offered support and you’ve not even been offered any interest.”

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