MINISTERS have been accused of failing to adequately tackle an epidemic of long Covid, especially in children as a record 155,000 Scots have been revealed to be suffering from the debilitating condition.
According to new estimates, seen by the Herald on Sunday they include nearly 10,000 children and young teenagers who have been described as the 'forgotten victims' of the pandemic.
The study between April 4 and May 1 shows the numbers with long Covid in Scotland are now nearly double that from the same period last year when there were 87,000 hit. It means that as many as one in 36 Scots have long Covid.
An estimated one in 17 of the long Covid sufferers are children and young people between the ages of two and 16.
There are now concerns Scotland has not done enough to protect children in schools from the worst effects of Covid - in the race to protect adults who were seen to be most at risk.
Two months before Boris Johnson's Covid lockdown in March, 2020, the Royal College of Paediatrics and Child Health and the Royal College of Physicians revealed growing evidence linking indoor air pollution and respiratory problems in children, and called for the health impact of the air within homes and schools to be taken seriously.
It said action should be taken to require improvements where air quality fails to meet minimum standards in schools and houses saying too many were damp and poorly ventilated, adversely affecting children's health.
It was later confirmed that one of the key routes of possible infection with Covid-19 is through the inhalation of the virus through the air.
Helen Goss of the charity Long Covid Kids in Scotland, whose daughter Anna, aged nine, has not recovered from Covid since catching it in 2020, said has been calling for improved indoor air quality in schools since the first lockdown and does not believe enough has been done to stem the tide of infections amongst children.
The Goss family
She believes not enough has been done to improve ventilation in schools despite the concerns raised before lockdown.
The Scottish government said it was spending £3m per year to support care for long Covid patients, but Ms Goss, the lead senior lead representative for the charity, said this was too little and too late.
"We believe that children have the right to breathe clean air, as they have the right to drink clean water. The Scottish Government has a duty to ensure that these children's rights are upheld, and invest in the improvement of ventilation and installation of air cleaning units in educational settings," she said.
"Prevention is better than cure, especially when there is no cure for long Covid. Unfortunately the public health messaging around Long Covid in children has been poor, and many parents/caregivers are unaware of just how debilitating this condition can be."
A few weeks after her daughter got Covid, she had a temperature of 40C, had a rash over her body, was not eating or drinking and found light painful to her eyes and sometimes could not be woken.
She went on to develop paediatric inflammatory multisystem syndrome (PIMS).
The school arranged home lessons through online learning platform e-Sgoil, which was developed to address teacher shortages in the Western Isles.
Anna also developed "terrifying" paediatric acute-onset neuropsychiatric syndrome (PANS) where inflammatory processes cause psychiatric symptoms.
The family was told treatment was not available on the NHS, and paid for private consultations. She was eventually offered antibiotics and anti-inflammatories, which dealt with the syndrome.
But support for other long Covid symptoms was even harder to access, Ms Goss said.
Ms Goss, from Westhill, Aberdeenshire, said children they are in contact have been largely housebound and miss and continue to miss enormous chunks of their education, are chronically unewll and with varying degrees of disability and yet have to fight to have their symptoms believed by clinicians.
Because they felt support for families was sadly and due to the gap gap of knowledge and understanding, the charity produced a support guide by way of support.
Ms Goss, who also has the post-viral condition, added: "Unfortunately children have continued to be marginalised and left out of the conversation. As they are unable to advocate for themselves, their voices are rarely heard."
The latest estimates based on an study headed by the Office for National Statistics (ONS) between April 4 and May 1, found that nearly two in five said they first had Covid-19 - or suspected they had it - at least two years previously.
Some 70% said they first had the virus at least 12 weeks previously, while as many as 41.3% first thought they had the virus at least a year earlier.
According to the study, long Covid is estimated to be adversely affecting the day-to-day activities of around seven in ten, with around one in five saying their ability to undertake day-to-day activities has been “limited a lot”.
The analysis which covered the whole of the UK is based on self-reported long Covid from a representative sample of people in private households in the four weeks to May 1 2022.
Post-Covid-19 syndrome is defined as signs and symptoms that develop during or after an infection of Covid-19, continue for more than 12 weeks, and are not explained by an alternative diagnosis.
Fatigue is cited as the common symptom - experienced by 55% of long Covid sufferers, followed by shortness of breath (32%), a cough (23%) and muscle ache (23%).
Of those who self-reported long Covid, nearly a third – first had the virus, or suspected they had it - during the Omicron period which began in the UK in December 2021 and was followed in March 2022 by another surge of infections driven by the BA.2 variant.
By contrast some 30% of those with self-reported long Covid said they first had Covid in the early period of the pandemic, before Alpha became the main variant in late 2020.
The rates of long Covid were highest among women, those aged 35 to 69 years, people living in more deprived areas, those working in social care, teaching and education or health care, and those with other health conditions or disabilities.
The analysis emerged less than a fortnight after the UK's coronavirus alert level was reduced, as two rare types of Omicron were reclassified as variants of concern.
The level was moved from four to three after advice from the four nations' chief medical officers and the NHS England medical director.
They said that "the current BA.2 driven Omicron wave is subsiding" and "direct COVID-19 healthcare pressures continue to decrease in all nations".
According to the ONS the number people testing positive for Covid in Scotland for the week ending May 28 was 105,900 - around one in 50 of the population. While it is a drop over a week, it is nearly ten times as many as the same period last year.
According to the National Records of Scotland there were 45 Covid-related deaths, a drop of eight on the previous week, but nearly six times more than the same period last year.
According to UK government data, the seven day average of the number of Covid patients Scottish hospitals on May 27 was 628. That is over six-and-a-half times more than this time last year, and just 177 fewer than the same period in 2020, as the first wave was in full swing.
Of those a weekly average of 6.3 patients were now in a serious condition using mechanical ventilation beds - that is one more than the same time last year.
A total of 14,686 people in Scotland have died with Covid mentioned in the death certificate since the outbreak began in March 2020.
In February, nearly two years after lockdown and as Covid restrictions were tailing off, the Scottish Government revealed plans to fight the virus by suggesting cutting the bottom off classroom doors in schools as a means of improving ventilation.
Education secretary Shirley-Anne Somerville said an estimated 2,000 doors classrooms could benefit from being “undercut to increase air flow”.
But it has emerged that the Scottish Government says that this did not become guidance to local authorities and now say that the "undercut" is now being seen as an "example" of what could be done.
The proposal was part of a package to make schools safe for Covid-19.
In a letter to the Scottish parliament’s education committee, Ms Somerville said the undercutting measure would cost an estimated £300,000, and had been factored into a £5m schools and early learning ventilation fund.
The measure was seen as a relatively inexpensive part of the retrofitting programmes – with £1.6m set to be spent on air filters and £2.4m for mechanical fans.
The UK government's building regulations on ventilation have long stipulated a minimum undercut in new houses in order to “ensure good transfer of air throughout the dwelling”.
Lesley Macniven, a founding member of the Long Covid Support charity said: "The focus of public health messaging on deaths and hospitalisations has given the public a very narrow impression of the impacts of Covid. Children have explicitly been excluded from the narrative. However the continually rising statistics tell a very different stories as to who and how many are affected.
"It has been hard enough to get traction campaigning for recognition, research and rehab for adults of working age who now experience chronic ill health and disability who are falling out of work.
"The emotional labour of looking after a sick child, with an unrecognised condition is also causing carers to sacrifice jobs and careers. Women of working age are already disproportionately affected by Long Covid. The net loss of women from the workforce equates to a massive loss of talent that many businesses invested in attracting pre-Covid.
"Ignoring this issue impacts on our nation’s health, families and our economy. It’s time to say enough and act on all fronts to end this vicious spiral of debility, denial and loss."
Long Covid isn't fully understood, and there's no internationally-agreed definition - so estimates of how common it is, or what the main symptoms do vary.
Most people who catch Covid don't become severely ill and get better relatively quickly.
But some have long-term problems after recovering from the original infection - even if they weren't very ill in the first place.
Guidance for UK health professionals refers to symptoms that continue for more than 12 weeks which cannot be explained by another cause.
According to the NHS, these can include extreme tiredness, shortness of breath, chest pain or tightness problems with memory and concentration known as brain fog, changes to taste and smell and joint pain.
But patient surveys suggest a range of other symptoms may also be present, including gut problems, insomnia and vision changes.
Research has also shown the brain can shrink by between 0.2% and 2% even after mild infection so unrepaired damage is a potential cause of symptoms like brain fog.
Another study suggests some people with long Covid have lung abnormalities.
Scientists have also reported changes in the immune system of people with long Covid. Inflammation is part of the body's normal response to infection or injury, but proteins in the blood suggest excessive inflammation in long Covid which could be driving some symptoms.
But the significance of these changes and whether they are permanent is unknown.
Fardos MacMillan, 32, lives near Inverness with her husband, daughter Connie, and seven-year-old son Harley who has Long Covid.
Harley caught Covid for the first time in March 2021 and had to be rushed to hospital with trouble breathing. He has existing asthma which has been severely exacerbated by Covid infection.
His family say his temperature regularly spikes out of nowhere, he gets regular rashes, muscle and joint weakness and pain, nausea, nose bleeds and extreme fatigue.
“We're now over a year on and Harley still has really bad breathing issues and problems with his chest and he struggles to do the things he used to do like play football," said Mrs MacMillan. "His breathlessness is the worst thing. He was really active before getting Covid but now struggles to keep up with his friends.
"He is regularly off school and has missed so much education. It’s heartbreaking as a parent to see your child so unwell and so down. I sometimes just break down and cry and wish I could get my little boy back.”
A Scottish Government spokesman said: “We recognise the impact that long Covid can have on peoples’ health and wellbeing. Given the range of symptoms which can be involved, we also know there’s no ‘one-size fits all’ response and our approach is to support people with long Covid to access care and support in a setting that is appropriate and as close to their home as practicable.
“Services and support are already being provided for those with long Covid and we are doing more to ensure that care is resourced and delivered across Scotland to support people in the most appropriate way.
“A long Covid strategic network has been established and brings together clinical experts, NHS Boards, third sector organisations including Chest Heart and Stroke Scotland and those with lived experience to guide how we plan and design care and ensure our £10 million Long COVID Support Fund is targeted at the areas where additional support can make the biggest difference.
“The first tranche of Long Covid funding was announced earlier this month and will enable NHS Boards to continue to develop and deliver the best models of care appropriate for their local population’s needs.”