At the time Tory MP Conor Burns defended of the PM’s birthday party with the explanation that Mr Johnson had been ambushed by a cake, millions of people were too sick to attend even their own birthday party. This is because they are Long Covid sufferers.
The All Party Parliamentary Group’s (APPG) latest session on coronovirus enquired about long Covid.
Risk of Long Covid less in those who have been double vaccinated
Dr Claire Steves, is a clinical senior lecturer at Kings College London studied Covid data from the Office for National Statistics estimates. She is also a leading scientist analysing Covid data collected from the app.
The Office for National Statistics estimate that 1.3 million people, or 2% of the population, are living with long Covid. This is based on people self-reporting symptoms that last more than a month after a Covid infection. More than half a million have had symptoms for at least a year, with ailments ranging from breathlessness, fatigue and a cough to muscle aches and pains, “brain fog”, headaches and palpitations.
Dr Steves found risk of Long Covid is less in people who had double vaccination compared to unvaccinated controls.
Professor Danny Altmann (Imperial college) explained that we do not know the effect of the Omicron variant outbreak on the number (1.3 million) estimated to have long Covid. He said that this was especially in our schools, where the variant is rampant. There are not sufficiently good ways of alleviating long Covid and there isn’t a good enough vaccine roll out.
Currently people with long Covid may be offered rehabilitation; this may take many months to sort out if the person is believed. Professor Altmann says more needs to be done:
“… we’re talking about the need for full blown medicine with specialist clinical investigation, specialist teams and specialist treatments. We haven’t thought sufficiently about where the staff and expertise and training and guidelines are going to come from. And, you have a very large group who acquired a disabled condition through their occupational exposure, especially healthcare workers and people are now unable to return to the same jobs. They really, really need consideration, protection, and legal support. It’s mind boggling to me that in the USA they already have legal protection with long Covid as a disability under the Disabilities Act. Neither in the EU nor in the UK do we have that and that’s very surprising to me.”
Numbers will almost certainly increase with reduced restrictions
Brendan Delaney is professor of medicine at ImperialCollege London, who with others put together a set of recommendations for recognising and managing long Covid.
Professor Delaney said the estimate of 1.3 million people having long Covid may have been a slight overestimate in December. He continued:
“ ..but I think right now that’s going to probably be an underestimate. Numbers are still going to be very large and will almost certainly increase with opening up.”
Layla Moran, the Liberal Democrat MP who chairs the APPG, said the government had paid:
“almost no attention to long Covid and the severe impact it was having on vital public services.”
She called for immediate support for those affected.
Stories from people with experience of Long Covid
Overwhelming Fatigue for long Covid sufferers
Ravi is a healthy 23-year-old, just graduated from university and starting a master’s degree. He’s now been very unwell with long Covid for ten months. The main symptom has been overwhelming fatigue, and this has forced him to spend 16 hours a day in bed which has prevented him from doing work, let alone living with anything resembling a normal life.
“.. living with long Covid as young person has been very difficult. I was a healthy person in my early 20s who lived like someone in their early 20s and I didn’t pay much attention to my health. I kind of threw myself around and lived quite a lively life then. But I’ve completely lost that life for the last ten months. To give you a bit of background I don’t actually know exactly when I contracted Covid. I belong to the sizeable minority of long haulers who developed it [Long Covid] from asymptomatic infections and at first it didn’t really occur to me that I had long Covid.
“… it was only when I paid more attention to my secondary symptoms in particular that I’ve lost my sense of smell and my sense of taste was much diminished then I realised I probably had long Covid. That was hen confirmed by UCL [University College London] long Covid clinic. Living with this illness, above all living with this fatigue which is so debilitating and has really taken my life away.”
From 16-year-old championship Irish dancer to exhaustion after climbing the stairs.
Rosie, 16 years old, was ‘pinged’ on her second day of school when she just starting her A levels. On repeat testing she never tested positive for Covid 19. However, she had contracted coronavirus as a mild disease.
Rosie now has long Covid. She was interviewed on BBC Northern Ireland
At the APPG Rosie’s story was told by her father Colin. She really wanted to speak. She wants to speak for other young people and give them a voice. However, her interview with BBC Northern Ireland a couple of weeks ago left her drained. Colin reported that Rosie has not returned to school since contracting Covid 19. Rosie had been extremely fit; she was a championship Irish dancer. and now if she climbs the stairs, she must sit on top of the stairs feeling dizzy and sick. One thing that David reports feeling very concerned about is her headaches. She’s had a headache since the start of September. The family have now paid privately to have an MRI of the brain.
Paying privately to get help for long Covid sufferers
Others also paid privately for help. Rebecca is a 41-year-old staff nurse, a fitness instructor, wife and mum of two daughters. Rebecca contracted Covid 19 from working in an emergency department on 7 April 2020. Since then, she’s been extremely debilitated with long Covid. Her ongoing symptoms include crippling fatigue, brain fog, muscle, and joint pain; she is now 80% housebound.
Rebecca struggled to get help and feels very upset about the medical care she received including from her GP. When the World Health Organisation recognised long Covid January 2021 Rebecca reached out to the media in Northern Ireland with her story.
Rebecca started a network of people with long Covid in Northern Ireland. She recounts that that all had to look for help themselves. She said that for an extremely unwell person with brain fog and cognitive dysfunction it was extremely difficult finding help. She described having reduced confidence in what she was saying. In talking to some health care providers Rebecca and others with long Covid described feeling displaced, dismissed, and sometimes feeling manipulated into doubting their own sanity.
The most help for Rebecca had been from the Northern Ireland Chest, Heart and Stroke charity. The charity adapted a chronic conditions and recovery programme for people with Long Covid.
“I can’t get my head around the fact that a charity is leading the Long Covid support here. I don’t think people realise how important it has been. It’s given me a lift, and even though I’m not 100% better, I can see a light at the end of the tunnel.”
Rebecca learnt that a clinical in Germany was treating people with long Covid. She had to find the funding to join the programme. The clinic is researching into the notion that long Covid is a multi-system vessel condition involving micro-clotti.
Scientific evidence shared with APPG
Some evidence for circulating micro clots in long Covid has been published from Stellenbosch University (South Africa).
“Lingering symptoms persist for as much as six months (or longer) after acute infection, where Covid 19 survivors complain of recurring fatigue or muscle weakness, being out of breath, sleep difficulties, and anxiety or depression.
“Given that blood clots can block microcapillaries and thereby inhibit oxygen exchange, the group investigated if the lingering symptoms of Long Covid might be due to the presence of persistent circulating plasma microclots. Their paper concludes with “Clotting pathologies in both acute Covid-19 infection and in Long Covid/PASC [Post-Acute Sequelae of Covid-19] might benefit from following a regime of continued anticlotting therapy to support the fibrinolytic system function.”
Layla Moran said:
“Thousands of frontline workers are now living with an often debilitating condition after being exposed to the virus while protecting this country…They cannot now be abandoned.”
The MPs making up the APPG have called on the government to recognise the condition as an occupational disease.