This article is primarily a blog post which Covid Longtail sufferer Louise Barnes wrote for a certain mental health organisation after being asked to do so. The said organisation then said they were going to publish somebody else’s instead and insulted her. Therefore she has sent her well written piece to me and I have edited it primarily to protect the identities of people who have bravely shared their experiences.
Louise Barnes says,
I never thought I’d be sitting here writing to our Prime Minister, Senior Cabinet Ministers, Science and Medical Advisers, nor doing interviews for the Times or Telegraph. I’m a former Detachee of the UK Government, a passionate geographer who has an interest in geography of disease having taught the subject for 16 years. When I got covid 19 in mid-March and didn’t recover, I knew I had to act. I set out to find out what symptoms everyone else was having, albeit on a geographical scale, globally. I set up a support group on facebook, the Post Covid Syndrome Support group. Six weeks on here we are, 2200 plus members in 40 countries, many of us untested, all struggling to get heard, suffering many debilitating conditions that are having a very real impact on mental health.
I started with 13 out of the 14 symptoms during the peak of the UK outbreak in March. The day lockdown began I found myself in the covid assessment unit at my local hospital. The hospital said they thought I had it, but my swab was deemed void and I wasn’t re-admitted, each time sent home, assumed to have recovered. I had two further hospital visits and two covid clinic visits. Testing was rightly Reserved for the frontline workers and those needing ventilation. By Easter weekend I was so ill I didn’t think I’d pull through and I faced the awful task of writing my will and putting my affairs in order. It was the worst thing I have ever had to do. I couldn’t bare to even have a face to face conversation with my elderly parents. I made arrangements with my sister for my funeral. I live alone and am disabled. On top of lockdown I felt so isolated and in such a dark place. My antibody test came back negative. As time wore on I didn’t seem to be recovering and I keep posting updates to friends that I thought I might be turning the corner, only to find that a few days later, I was nauseous, fatigued again or bed ridden. This continued for another 4 weeks. I was now at week 8 and just couldn’t understand what was going on. Then bizarre cognitive changes started happening, I would forget things, get brain fog and confusion. I would wake up and not know what day it was. I started having chronic fatigue, violent shaking, bizarre ‘buzzing’, blurry vision at night, hearing and seeing things. It was like a demon with strange psychological disturbances.
Around week 8 I came across an article about Professor Paul Garner and I had my Eureka moment. He was the same week as me and reading his symptoms it was like describing myself. I had the awful realisation that I was actually sick, not recovering and that I had long tail covid. I was devastated, but still hopeful I would go on to recover in time. I am now Week 16 and still suffering both existing and new effects.
By the end of May I set up the Post Covid Syndrome Support Group on facebook. I wanted to create a group for long tailers, irrespective of testing and irrespective of location. There is a real eclectic mix of people in the group; neuroscientists, students, retired professionals, nurses, doctors, teachers, chief executives, cooks .covid does not discriminate. 48% are from the UK, 40% from the USA and many more from Croatia, Estonia, Iceland, Japan, China, Ireland, Canada, Philippines, Spain, France, South Africa, Russia and many more.
When I set up the group I was astounded by how many people were out there telling me they thought they were ‘imagining things’, many have said, ‘thank god I’m not alone’, many have also reported being disbelieved by friends, family members, paramedics, GP’s and hospitals. One member reports being told ‘you are delusional’ and another ‘you can’t have covid this long, it only lasts 2 weeks’. We call ourselves ‘the untestables’. No one wants to know us.
Some members report they had been banished to one room in a house for months, only seeing 4 walls. When I’ve talked face to face on zoom with some members, we both ended up having a weep over a cup of tea and a virtual cuddle. How refreshing that people you have never met can suddenly come into your life and become a pillar of support. Some refer to the group as ‘family’. We share relaxation ideas and offer ideas and share information. What has been shocking are the stories emanating from all over the World: You realise that you are not alone in this. Having no positive test (swab or antibody) has added to the problems and made it very difficult to access services or to participate in scientific research.
After weeks and months of ill health, on top of an already overbearing lockdown, coupled with being forced to isolate from family members, many of the group are reporting that they are suffering from a whole spectrum of mental health issues caused by isolation, debilitating neurological, physiological conditions which wax and wane, that affects virtually every part of the body. Some workers report being fired by non understanding employers, some HR have been harassing members demanding to know when people will return to work, others forced to resign. Some members have had incontinence at work and their employers show little sympathy.
Others are facing childcare problems. One member who is a single parent reports she is unable to look after her disabled child, another man, aged 36 contacted me last week. He has lost his job, has a new one lined up but has had to push that forward now as he is still sick. He told me he was alone at home whilst his partner went to work and is unable to cope with his one year old child.
A 43 year old, Primary School Teacher Leicestershire reports feeling despair and frustration from the lack of ability to carry other normal routine and day to day activities. The fear of not knowing what is happening physiologically to her and not knowing for sure if there will be permanent long term effects coupled with her health not being taken seriously by medical professionals who don’t show any interest in allaying those fears is causing deep anxiety.
Another primary school teacher, is 46 from Lancashire. She lost her father to covid 19 in March. She has suffered regular episodes of low mood followed by tearfulness for over 12 years. Towards the end of his life and right after his passing she developed anxiety and saw a swift spiral downwards. After leaving the hospital the family were not allowed to be close or have hugs. She then tested positive and developed ‘depression fog’ as she had to be separated from her children. She coped by using meditation apps and reading online support as well as talking about things with good friends on the phone.
A 62 year old, former early years nursery teacher from east London feels the disease brings on a whole raft of emotions. She says, “I was in tears on the phone to my daughter. I didn’t want to worry my grown up children but it is hard to keep your emotions from spilling out in this situation as well as not knowing why your body is behaving in this way. It’s very alarming at times”
A 36 year old, from Seattle, USA was previously a healthy mother of two boys. She worked as a behavioural therapist and noticed personality changes. She states, “I was feeling a lot of irritability and started to have an ‘edge’ to my tone and would lash out. I think it was due to the effects of such a horrible illness coupled with anger and anxiety.”
Louise Barnes also says,
Many members report similar effects. 10% report developing depression, 30% say they are suffering significant anxiety and stress, a further 26.9% have seen a decrease in their well being and 13.4% report that their previous mental health issues have worsened. 31% report feelings of ‘hopelessness’, 37.4% say they’ve had little support and 25.6% say they are bewildered they are not getting more support.
Moreover, skilled and highly educated people are being dismissed by professionals. 22% say they are not being believed by medics, 19% have had the long tail dismissed as a common cold or hay fever, 13.8% report having no support at all. 16.8% say that they have been put in a very dark place. Indeed, Covid 19 post covid syndrome is one of the most challenging and loneliest illnesses around.
Louise has reached out to several notable research projects, one is a study taking place in Canada at the Cambridge Brain Institute and is looking at cognitive changes over a year, Mount Sinai hospital have expressed an interest. One former student of Louise has recently set up a platform called CT-X set up by several bio-medic graduates from Imperial and UCL to put patients in contact with researchers. Several members are now going to participate in the RAMP: Pandemic and Mental Health study which is being conducted by Kings College, London.
Louise has additionally reached out the to Government and has scheduled meetings with both the Rt Honourable Secretary of State for Health, Matt Hancock and the Rt Honourable Secretary of State for the DWP, Dr Therese Coffey to discuss the issues urgently at senior level. She says ‘Shouting out is good but we are a very pro-active group and we intend to get the support we need’. Louise has written to the Prime Minister, Dr. Patrick Vallance and Professor Chris Whitty amongst others. She has also reached out to MIND, the Samaritans and the Red Cross to help support members. She says ‘We must get support for our mental health otherwise it will just become a ticking time bomb’. This group of people are not recovering. Most are weeks 10 to 20 and some 30. They have been sick for 4, 5, 6 months. The new ‘Your covid recovery’ app is online and only for 12 weeks. What they are needing are face to face consultations with mental health teams, neurologists, cardiologists, pulmonologists, they are needing scans, tests and physiotherapy. If they don’t then Louise fears they will become a large pool of the ‘forgotten victims of covid’.