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Today is an anniversary that George Hencken never imagined. It is exactly one year since she caught COVID-19. But unlike most people who have suffered from the disease, she remains ill. “It’s a year since I’ve felt like myself,” she said. “It’s a year since my life as I knew it came to an end. And I don’t know if I’m going to get it back again.” Long Covid doesn’t quite describe the depths of her fatigue. “It’s not tiredness. It’s like having jet lag and a hangover. It feels like I’ve been poisoned,” she said. The problem for Hencken and the thousands still suffering from the virus months later is that long Covid doesn’t describe much at all. The umbrella term covers people who are breathless and fatigued, or who have brain fog, headaches and tingling arms, or who have chest pains and heart palpitations, or all of those and dozens more symptoms besides. Support groups such as LongCovidSOS have been fighting hard for the condition to be recognised and taken seriously – sufferers say they feel disbelieved, and doctors initially had little information, support or even funding. Last week the government announced £18.5m through the National Institute for Health Research to fund four major studies attempting to understand exactly what long Covid means, why it affects so many apparently healthy people, and how they can be helped. Research by University College London will track the health of 60,000 people, including people with long Covid and a control group who will wear a Fitbit-style wristband to measure heart rate, breathing and exercise levels. The aim is to chart and identify clusters of symptoms, Professor Nishi Chaturvedi said. “My sense is that the multiplicity of symptoms that people are reporting suggests to me and many others that it’s not one thing, but several syndromes. We’re not even at the starting point yet of knowing what it is,” she said. Read full story Source: The Guardian, 20 February 2021

Boris Johnson is being urged to launch a compensation scheme for frontline workers who are suffering from the long-term effects of coronavirus. The all-party parliamentary group on coronavirus said the prime minister should recognise long Covid as an occupational disease, saying some sufferers have found it hard to return to work. A letter, signed by more than 60 MPs and peers, has been sent to Johnson. Layla Moran, the APPG’s chair, said: “Long Covid is the hidden health crisis of the pandemic, and it is likely to have an enormous impact on society for many years to come. “When it comes to frontline NHS, care and key workers, they were specifically asked to go to work and save lives while everyone else was asked to stay at home." “They were exposed to an increased level of risk of catching the virus, often without adequate levels of PPE.” The group wants the government to follow France, Germany, Belgium and Denmark, which have formally recognised Covid as an “occupational disease”. Read full story Source: The Guardian, 18 February 2021

The World Health Organization (WHO) has urged countries to prioritise rehabilitation for the medium and long term consequences of covid-19 and to gather information on “long covid” more systematically. WHO has produced a standardised form to report clinical data from individual patients after hospital discharge or after their acute illness to examine the medium and long term consequences of COVID-19.1 It has also set up technical working groups to build a consensus on the clinical description of what WHO now calls “the post-covid-19 condition” and to define research priorities. Speaking at the first of a series of seminars, WHO’s director general, Tedros Ghebreyesus, highlighted the “three Rs”—recognition, research, and rehabilitation. Recognition of the post-covid-19 condition was now increasing, he said, but still not enough research was carried out. He added that countries needed to show commitment to including rehabilitation as part of their healthcare service. “Long covid has an impact on the individual, on society, and on the economy,” he warned. Read full story Source: BMJ, 10 February 2021

Tens of thousands of coronavirus survivors needing long-term care are heaping pressure on Britain’s stretched community services, threatening a crisis that experts warn could dwarf that seen in hospitals over the past 12 months. As many as 100,000 intensive care patients, including up to 15,000 Covid-19 survivors, will need long-term community nursing care after being discharged from hospitals during the past 12 months, The Independent has been told. This will be on top of an as yet unknown number of Covid patients from the 350,000 treated on general wards since the pandemic began, as well as tens of thousands of people who were sick without going to hospital but have been left with debilitating symptoms of long Covid. Labour’s shadow health minister Liz Kendall warned: “There will be huge pressures on community services as people who need long-term support are discharged back into their own homes. “Ministers have got to put in place a proper workforce strategy for the NHS and community care otherwise we will see people struggling to recover and the burden of care could also fall on their families." “This is one of the long-term consequences of Covid that we haven’t begun to even think through yet.” Read full story Source: The Independent, 14 February 2021

The MP leading an investigation into coronavirus fears long Covid could cost the UK around £2.5 billion a year. Layla Moran believes the emerging crisis is comparable to the impact rheumatoid arthritis has on the health service, with hundreds of thousands of people expected to be dealing with the condition for months. The ONS says around one in ten people who test positive will go on to develop long Covid, a catch all term to describe a host of ongoing symptoms in coronavirus patients. More than 1.7 million COVID-19 infections have been reported since Christmas Day in the UK. Speaking exclusively to Metro.co.uk, Ms Moran – who chairs the All Party Parliamentary Group (APPG) on coronavirus, said: "The amount of money that we are expecting to spend long term on long Covid could be similar to rheumatoid arthritis. How many people know someone with rheumatoid arthritis? It is going to be higher for long Covid." Read full story Source: The Metro, 10 February 2021

The MP leading an investigation into coronavirus fears Long Covid will be one of the biggest issues facing the UK for the next decade, after emerging research revealed most sufferers are still unable to work six months in. Layla Moran branded the scale of the problem ‘enormous’, as various experts warned that even healthy young adults have been left struggling to function for months on end. With hundreds of thousands of Brits now believed to have Long Covid, medics fear its impact on the world of work could herald another ‘massive economic crisis’. Workers in their 20s and 30s have told of a host of debilitating symptoms keeping them out of the office for much of last year and making simple tasks like walking to the toilet seem ‘like climbing a mountain’. Speaking exclusively to Metro.co.uk, Ms Moran – who chairs the All Party Parliamentary Group (APPG) on coronavirus – said: "The scale of this, in terms of the future prosperity of our country, is enormous. It is going to be, I think, one of the main issues that we are going to deal with not just in ten years but beyond." Read full story Source: Metro, 4 February 2021

Press release 3 February 2021 The charity Patient Safety Learning and patient group Long Covid Support are calling for the creation of a dedicated Minister for Long Covid to take a coordinated, multi-stakeholder approach to this issue.[1] Long Covid patients are people with confirmed or suspected Covid-19 who continue to struggle with prolonged, debilitating and sometimes severe symptoms months later.[2] Statistics indicate that there are currently hundreds of thousands of people living with Long Covid in the UK, with at least one in 10 people still experiencing symptoms 12 weeks after initial infection.[3] While there has been some progress to put in place support for people with Long Covid, there remains a complex spectrum of issues that need to be addressed. These are summarised in a blog, published by Patient Safety Learning and Long Covid Support today, calling for the UK Government to make urgent and significant improvements in their response to Long Covid.[4] Claire Hastie of the Long Covid Support, said: “Almost one year on from when many first fell ill, people with Long Covid are simply not getting the help they need. There is an urgent need to increase the pace and scale of the response to help the hundreds of thousands of people affected (including children). This needs to be driven by a dedicated minister with the power to affect change.” Helen Hughes, Chief Executive of Patient Safety Learning, said: “People living with Long Covid have too often been left ‘joining the dots’ trying to understand how they can access safe, quality treatment and support and what they can do to improve their health. Clinical advice and access to further investigations has been inconsistent, leaving many feeling abandoned, confused and understandably concerned for their future health outcomes. Long Covid not only impacts people’s physical and mental health, but also their ability to work and their economic circumstances. We believe the appointment of a Minister for Long Covid would help to provide leadership, accountability and a coordinated response to these challenges.” Notes to editors: [1] Patient Safety Learning is a charity and independent voice for improving patient safety. We harness the knowledge, insights, enthusiasm and commitment of health and social care organisations, professionals and patients for system-wide change and the reduction of avoidable harm. [2] The symptoms for those with Long Covid vary greatly but many are experiencing rashes, shortness of breath, neurological and gastrointestinal problems, abnormal temperatures, cardiac symptoms and extreme fatigue. [3] Office for National Statistics, The prevalence of Long Covid symptoms and Covid-19 complications, 16 December 2020. https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications [4] Patient Safety Learning and Long Covid Support, Long Covid Minister needed to respond to the growing crisis, 3 February 2020. https://www.patientsafetylearning.org/blog/long-covid-minister-needed-to-respond-to-growing-crisis

New advice on how to treat coronavirus has been issued by the World Health Organisation (WHO) as it also begins a wide-reaching study into the effects of so-called "long COVID". For COVID-19 patients at home, WHO is now suggesting the use of a pulse oximetry machine to measure oxygen levels in the blood - but warns that this should only be done after full patient education and with medical follow-up support if necessary. For hospitalised patients, WHO is recommending the use of low-dose anticoagulants to prevent clots forming in blood vessels, known as thrombosis. And for sufferers who are already using supplemental oxygen, the organisation is officially endorsing the positioning of patients on their stomachs to increase oxygen flow. This is known as "awake prone positioning". The new guidelines also include a recommendation that healthcare professionals favour "clinical judgement over models" in making decisions for individual patients. Read full story Source: Sky News, 26 January 2021

Long Covid is no respecter of youth, health or fitness. It afflicts more women than men but it can strike anyone down, including people whose initial infection seemed mild, or even asymptomatic. In some cases, long Covid could mean lifelong Covid. The effects can be horrible. Among them are lung damage, heart damage and brain damage that can cause memory loss and brain fog, kidney damage, severe headaches, muscle and joint pain, loss of taste and smell, anxiety, depression and, above all, fatigue. We should all fear the lasting consequences of this pandemic. Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell. It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection. Among the common symptoms of ME/CFS are extreme fatigue that is not relieved by rest, and “post-exertional malaise”: even mild physical or mental effort can make patients extremely unwell. Many sufferers are confined to their home or even their bed, with their working life, social life and family life truncated. There is, so far, no diagnostic test and no cure. Yet ME/CFS has been disgracefully neglected by science and medicine. The NHS is now setting up specialist clinics to treat long Covid. But already, apparent mistakes are being made. Without the necessary caveats, the NHS recommends steadily increasing levels of exercise for people suffering from post-Covid fatigue. But as ME/CFS patients with post-exertional malaise know, this prescription, though it sounds intuitive, could be highly damaging. We need massive research programmes into both long Covid and ME/CFS, coupled with better information for doctors. Read full story Source: The Guardian, 21 January 2021

A Times reporter caught the coronavirus during the New York City outbreak last April. But the acute phase of the illness was just the beginning. Laura recounts her experience of Covid nearly 3 months after first being diagnosed. "I remember the second time I thought I would die." Read full story Source: The New York Times, 21 January 2021