Croakey is closed for summer holidays and will resume publishing in the week of 9 January 2023. In the meantime, we are re-publishing some of our top articles from 2022.
This article was first published on Thursday, December 8, 2022.
Introduction by Croakey: Hundreds of people have shared details of their often debilitating experiences with Long COVID with a Federal inquiry that is also investigating the impact of repeated COVID infections.
The inquiry recently released an issues paper stating that the House of Representatives Standing Committee on Health, Aged Care and Sport now plans to hold multiple public hearings to receive oral evidence from a range of stakeholders.
Many of the 370 submissions to the committee are from consumers who detail diverse experiences with Long COVID, including their symptoms and attempts to seek treatment.
Croakey editor Jennifer Doggett provides an overview below of these submissions, including recommendations to improve prevention, treatment and support. (Note that this article includes only submissions from people who allowed their names to be made public and does not include the many submissions from people who chose to remain anonymous).
Jennifer Doggett writes:
Consumer submissions to the Parliamentary inquiry provide a detailed picture of the diverse experiences of people with Long COVID (LC) and its current and likely future impact on our health system and broader community.
Key overarching messages arising from these submissions are:
- LC can happen to anyone – many submissions came from young, fit, healthy, vaccinated people who have been completely debilitated by LC
- Many people with LC were infected at their workplaces and educational institutions, including teachers, nurses and students
- Our health system is struggling at all levels to provide treatment to people with LC – GPs lack knowledge and support, specialist care is patchy and expensive, LC clinics often have long waiting lists and provide inconsistent advice and care
- People with LC are struggling – not just with the symptoms of this condition but with the difficulties in accessing and affording the treatment they need
- The impact of LC is reaching beyond individuals to affect their families and carers, workplaces and broader communities.
Before COVID, I was a fit 33-year-old who went to the gym multiple times a week and worked fulltime in a job I enjoyed. I caught COVID ‘despite being fully vaccinated’ in May. I was very unwell during my infection but I didn’t require hospitalisation. From the time of infection onwards my life has been a complete nightmare and I’m not sure what the future holds anymore.
I am no longer capable of working; I was a neuroscientist who had just finished my postdoc in the USA and was looking at applying to lead scientist or clinical research positions back in Australia. I am lucky nowadays if I can stay on top of emails to close up previous projects. My husband is now the sole bread winner and likely will continue to be for the remainder of our lives, which puts a lot of pressure on him. My children no longer have an active, involved parent; I am not capable of taking them out to play sport or do fun activities or even just attend friends’ birthday parties.
There has been a huge impact on my life from Long COVID. I am 28 years old and before COVID I was studying a PhD and working full time as a psychologist, I was active and healthy. I had to quit one job, stop my PhD and am now on unpaid leave from my remaining job. My income has been slashed and I am spending a lot of money on doctors and treatments….my partner, who also works full time and studies part time, now has to do all of the housework and cooking so I have enough energy to have a shower every second day.
It’s clear from the diversity of symptoms reported in the submissions that LC has a wide range of impacts on all systems of the body.
A group of symptoms is described in the majority of the submissions from people with LC and their carers. These include:
- extreme fatigue
- problems regulating blood pressure
- cardiac issues, such as pericarditis and brachycardia
- cognitive dysfunction, often described as “brain fog”
- Post-exertional malaise (PEM)
- Postural Orthostatic Tachycardia Syndrome (POTS)
However, there is an even longer list of less common symptoms reported in the submissions, including:
- severe tracheitis
- chronic cough
- abdominal pain
- panic attacks
- digestive and gut disorders
- neurological problems
- speech issues
- Mast Cell Activation Syndrome (MCAS)
- permanent hives
- “histamine storms”
- sharp pains and pins and needles in limbs
- memory loss
- increased susceptibility to other infections
- chronic fatigue syndrome
- Microclotting Livedo Reticularis.
Most of the people who made submissions report multiple overlapping symptoms, compounding the impact of LC and making seeking help difficult, given that this often involves seeing multiple health professionals with different areas of expertise.
After testing positive for COVID in early July 22 I have been continuously sick with the main symptoms being extreme fatigue, dizziness, vertigo, tinnitus, severe tracheitis, chronic cough.
My most debilitating current symptoms are fatigue, cognitive dysfunction, PEM and Postural Orthostatic Tachycardia Syndrome (POTS). I find it difficult to walk or stand for more than 5-10 minutes at a time or walk upstairs, and I must lie down for the majority of the day.
Stephen and Sarah Duckett
One of us (Sarah) contracted COVID in the pre-vaccination period (October 2020) at age 25, and then suffered one form of long-COVID, parosmia, a distortion of taste and smell, for the next 14 months. There was no treatment for this. Since contracting COVID, Sarah has observed she is more likely to get other illnesses (e.g. flu) than her experience pre-COVID.
Other submissions also report this.
I was acutely ill with cough, body aches, sore throat, and extreme fatigue for three months post infection. I had a chronic headache for five months post infection. My sore throat persisted until seven months post infection. I slept 14-16 hours a day for six months post infection and would uncontrollably black out if I tried to stay awake for longer than three hours at a time. I have developed memory holes – there are entire weeks in March and April of 2022 that I do not remember. I have severe speech and cognitive issues and am no longer able to work (I was a neuroscience researcher) as I am too unwell. I developed POTS and spent weeks at a time falling over from dizziness. I have MCAS and have permanent hives all over the back of my hands, on my chest and upper thighs, along with experiencing “histamine storms” where I have uncontrollable sneezing, wheezing, watery eyes and migraine for 48 hours at a time.
My autonomic nervous system is shot. It can no longer regulate my blood pressure, heart rate, digestion, pupil dilation and a million other processes I’ve never given so much as a second thought to.
I am now four and a half months on from the acute phase of COVID-19 and I am still experiencing fatigue, cognitive impairment (trouble recalling words and spelling them at times), dysautonomia (jolting and zapping and pins and needles in my limbs), tinnitus, insomnia, brachycardia (which is slowly improving, breathlessness, anxiety and depression.
Consumers described cognitive symptoms as some of the most difficult to manage as these affect their sense of self and ability to interact with others and process information. “Brain fog” in conjunction with fatigue (both very common symptoms) also makes it much more difficult for people to navigate the health system to access the treatment they need.
I have also experienced complete non recognition of a friend I have known for over twenty years. I explained to her that I did not recognise her, due to Long COVID, and she spent five minutes telling me things that I should have known until I was able to recall who she was. Again, it was very disconcerting (and rather embarrassing too).
The sense of being dislocated/disconnected from your own brain is one of the strangest things I have ever experienced. It is also a very lonely thing to go through, as it is very hard to properly explain what is happening, partly because it is so unusual, and partly because my language skills are impaired by my brain fog. Sometimes I really felt like I was losing my normal mind, in that the way my mind was working was not something I recognised as normal or my own. There is a recognition that I should know something (like my friend) but that the information I need is not retrievable. There are gaps in my memory and knowledge. I do not feel like my true self. I feel cognitively diminished.
My brain fog presents varyingly as a thick fog that is hard to think through, sometimes head pressure, sometimes buzzing, tingling or ringing, sometimes a ‘bruised’ feeling, sometimes burning in the lower back of my skull, sometimes rapid exhaustion (onset of head pressure, difficulty keeping eyes open) after short mental tasks (sometimes 2 minutes, sometimes 30 minutes). These include conversations, writing.
At its worst, entire brain functions were inaccessible to me. I had no ‘inner voice’ – no automatic thoughts, and no feelings. Any mental activities became immensely difficult – I could not listen to speech and process it without feeling mentally fatigued. I could not watch tv or have a conversation with my partner as a result.
The impacts of Long COVID on my life have been devastating. My life is completely on hold. I cannot work, cannot meaningfully speak to family or friends, cannot read books or long articles. Long COVID has robbed me of my main tool: my problem-solving ability. It makes me feel helpless at times.
I miss the use of my brain desperately. I am hopeful that this is temporary. For a few minutes or hours a day, on good days, I feel like myself. I hang on to research that says this is likely all reversible.
Overall the stories of diagnosis and treatment were of a health system not coping with people with this condition. Many described their repeated unsuccessful attempts to obtain a diagnosis and even when a diagnosis was made, consumers reporting experiencing a range of barriers to accessing care, including cost, a lack of suitable services and waiting lists of months or sometimes years for appointments.
Sian Webster described this inconsistent and unpredictable approach to treatment as “a lotto ticket approach to finding someone who has the correct knowledge, gives the right care and who believes you”.
Specific issues relating to the diagnosis and treatment of LC raised in the submissions include:
- a lack of knowledge among many medical professionals, including GPs and specialists, of LC
- being ignored or dismissed by doctors, sometimes with symptoms being incorrectly diagnosed as a mental health issue
- receiving advice and treatment from health professionals which is not based on evidence and in some cases counter-indicated by evidence
- little support provided by the government – no or unhelpful information on websites and helplines
- difficulties in accessing evidence-based treatments, such as anti-viral medication, due to restrictions on availability
- few dedicated LC clinics, most with long waiting lists for these
- difficulties in finding out about LC clinics and their eligibility criteria (due to a lack of publicly accessible information about them and a lack of knowledge among GPs and other health professionals)
- different and inconsistent advice and treatment provided at LC clinics around the country
- high out-of-pocket costs for many patients, due to the frequent need for multiple providers, the need for services with high co-payments (allied health and medical specialists), expensive tests (MRIs) and medication which is not on the PBS.
- a reliance on social media and online support groups to share information about treatment options and evidence from research and clinical trials.
Both the physio and the lung specialist were dismissive and did not listen to my concerns and symptoms. I have been forced to research medical papers on my own which is difficult with brain fog, to find UK and USA treatment trials with vitamin supplements and have been trialling them myself. Apart from being time consuming and exhausting, it is extremely expensive.
My GP, whilst empathetic, denied Long COVID diagnosis until I was over three months of symptoms, before referring me to a lung specialist. I requested several times to be referred to a LC clinic in Sydney but was dismissed and eventually told they are not accepting anyone from out of direct city health area.
The current Long COVID clinics are a 50/50 bet on whether they are actually up to date with best practice and research into treating post-viral illnesses. Half of them use dangerous and damaging “treatments” such as graded exercise therapy, that actually make Long Covid patients more ill.
There is no information available on how to manage post COVID issues if you do not recover After a month I knew I needed help but I did not know how hard it was going to be to get it. At first, I tried government websites and the COVID helpline, unfortunately for reasons I don’t understand both had no meaningful information. In the end only social media groups with people suffering the same issues provided any assistance.
From my experience most doctors don’t know what to do so they send you to a specialist, the specialist then runs a bunch of standard tests that are not designed to identify our issues. At the end of the process, you have no money and no answers.
My GP doesn’t have any information regarding LC and he (like most GPs at the moment) is so rushed off his feet I don’t believe he has time to look into it, and I don’t blame him for that one bit. I had to wait three months before I could get a referral to the LC clinic, which was then rejected as apparently I wasn’t in the right catchment, but there was zero information about where to send the referral for the right catchment. It’s been two months since and still no contact from any one from any LC clinic.
I saw my GP at three weeks, he kept reassuring me that because I’d had the four vaccinations, the chance of me developing Long COVID was low. By six weeks he wrote me a sick certificate so I could continue to work reduced hours. By eight weeks we talked about the Long COVID clinics. He said I had to wait until three months before I could apply and that there would probably be a long wait. He suggested going to see an exercise physician privately, which cost about $100 per 1/2hr session. I wondered what those who couldn’t afford it would do. While sessions were good to get me physically moving again, they admit themselves that they don’t know a lot about Long COVID as they are learning along the way like the rest of us.
Bethany Wormald (Long COVID patient) and Matthew Wormald (Bethany’s husband and carer)
Our GP was very helpful in directing us to St Vincent’s Long Covid Clinic, a rehabilitation physiotherapist and a good cardiologist, but doesn’t seem to get any guidance from the government. Possibly because there is no set treatment for LC, insufficient funding for studies into treatment, and insufficient resources available. We submitted an application for the St Vincent’s Long Covid Clinic on 17 June 2022 and were offered an initial consultation for late December. This wait was subsequently reduced to November, still a five month wait.
I have found it difficult to advocate for myself due to confusion and brain fog. Once this improved a bit I could advocate for myself better. I have seen a physio who I’ve educated as she wasn’t aware of my limitations to do exercise. I’ve seen an exercise physiologist who didn’t even consider my symptoms and proceeded to suggest huge amounts of exercise that sent me into a crash lasting weeks. She didn’t understand the muscle fatigue and post exertional malaise. I recently went to a new GP as mine was unavailable and twice he asked pointedly if I had depression, I never have had and don’t have depression now. He acknowledged the Long COVID but also didn’t really grasp the impact it has had on my lifestyle and body. I was talking to him about my weight and I don’t think he grasped the impact brain fog has had on my diet and the muscle fatigue had impacted my ability to prepare healthy foods.
My GP has been sympathetic to my experiences; but has told me that in the absence of government advice about how to treat patients with Long COVID there is nothing he can do other than tell patients it takes time to recover.
At three and a half months my GP referred me to the Long COVID clinic at St Vincent’s Hospital as he said that this would be the place where I would most likely be able to access the trialled treatments…two weeks later I received a response from the Long COVID Clinical Nurse Consultant that suggested I would benefit from seeing the rehabilitation specialist at the clinic, but the next available appointment is in a year’s time in November 2023.
Navigating the medical system absent a Long COVID clinic has been difficult.
My cardiologist has no knowledge of neurological symptoms and I can’t get to see a neurologist for a year. I was referred by my GP for a barium swallow test but due to the worldwide shortage of barium, due to the pandemic, I can’t get a test unless referred by a neurologist. I can’t have a contrast test instead because I am allergic to crab and iodine. My allergies have been exacerbated by Long COVID. No one will risk me taking the substitute test.
Since getting COVID, I have been treated by two ambulances, two hospitals, three GPs, three rehab clinics. I have seen physiotherapists, speech therapists and have a referral to an occupational therapist. I have had ECGs, CAT scans, x-rays and numerous blood tests plus blood pressure observations at the pharmacy.
It cost more than $4,000 for home help for a week after I fell and couldn’t be left alone. I have spent more than $1,000 on medication, supplements, tests, and medical and rehab appointments.
In terms of treatment, the best information I have found is online rather from my GP. Prior to having Long COVID, I was a masters level athlete competing in 400m track and the 5k. Because of this, I have found a lot of great tips and advice from an online Facebook Support Group called Long Covid Support for Endurance Athletes.
It was in this group that I learned the importance of pacing, rest, patience and lots more info on supplements, tips on returning to work, exercise intolerance etc. It has been comforting to know that I am not suffering alone, which would have been the case without such online support groups.
Twitter has also been invaluable. It is on Twitter that I stay on top of current Long COVID research directly from the researchers. Example, research has shown that Long COVID patients have micro-clots in their vessels (hence the fatigue), and may have inflammation in the brain and that the brain does not use glucose properly (hence the brain fog/cognitive dysfunction).
Twitter is also a good place for people with Long COVID to share their experiences with other sufferers, including information on treatments and GPs that understand the issue.
The most effective results so far, though, have come from what might be considered experimental treatments overseas. I went to Germany to receive Heparin Extracorporeal LDL/Fibrinogen Precipitation (HELP) Apheresis accompanied by triple anticoagulation therapy: nine treatments from February-May, and another three treatments during August. This was started when a clinic in Germany applied HELP Apheresis to some Long COVID patients and found that they improved – the leading theory associated with this treatment concerns microclots. This improved my breathing, fatigue, brain fog, and PEM. Between the two rounds of treatment, I went to the UK to receive 55 sessions of Hyperbaric Oxygen Therapy (HBOT) at a pressure of two atmospheres over three months…..I improved a lot in fatigue/stamina, brain fog and chest pain. Almost all of the benefit I obtained from the oxygen therapy remains with me at this point.
The overwhelming picture from the submissions is of lives de-railed and put on hold due to the debilitating effects of LC, compounded by uncertainty about the long-term prognosis.
Many consumers reported that they had gone from being healthy and active to currently being unable to undertake even the basic tasks of living.
Prior to having Long COVID, I had many goals. But now I have Long COVID, I pretty much only have one. And that is to get better.
Just one month before getting COVID, I could hike 15 miles in one day. I could kayak, jog, and do strenuous yardwork after working a hospital shift where I performed intricate medical charting on the computer, engaged in critical thinking and multitasking. Now, I struggle to take a shower.
Before COVID I ran five times a week, about 60kms a week. I presented at national and state conferences for my work. Now I couldn’t walk one kilometre and I tried to do a presentation just to my work colleagues and it was awful. I could no longer multi task, my brain just could not handle it.
I feel like I am trapped. Trapped in a body that I don’t trust anymore. Trapped in a tiny daily circle of house and garden and nothing being started and nothing being finished.
My cognitive dysfunction and debilitating fatigue levels mean I cannot work or drive. I need a wheelchair to leave the house and use a walker inside on bad days. I have not been able to drop off or pick up my children from School, Kinder and day care all year.
I am unable to plan for the future because doctors tell me they don’t know if or when I will get better. I am getting married next year and have stopped planning since I don’t know if I will be well enough.
Impact on others
Many consumers reported that their condition was having a cascading effect on their families and carers, due to their inability to work and reliance on others to looks after them and take up additional family responsibilities.
My partner has been put under great stress due to my illness. When I initially collapsed at home, he thought I was dying and he remains psychologically distraught from the experience. In addition to working full-time he was tasked with driving me to and from all my medical appointments…he also often attended appointments with me because I could not remember everything I need to discuss with doctors or, at times, find the words required to advocate for myself when necessary, he has also been doing most of the household chores and making meals because I often don’t have the energy to do them. A GP expressed concern about my partner’s wellbeing in his role of caring for me and this has also been deeply upsetting.
Consumers also reported experienced financial difficulties, due to the twin impacts of reduced capacity for work and the cost of tests and ongoing treatment. This impacted more on people who were in casual employment or were self-employed and added to the additional pressure on partners and family members who often had to take up caring responsibilities as well as suddenly becoming the sole breadwinner for the family.
The financial burden of going to the GP and lung specialist and the medication and vitamin supplements is immense.
I was self-employed and have not been able to run my sole trader business. So no income for six months, watching all my savings dwindle away, thankful I own my home and have fruit trees and veggies in the garden. Without the advocacy of my daughter-in-law I would be curled up in a corner just waiting to die. But she takes me to doctors, to specialists, and puts her hand in her pocket to help cover all the gap fees. Do you have any idea what an MRI gap costs? I nearly died of shock.
Stress about reinfection
Stress and anxiety about the possibility of re-infection was also a common theme, with many consumers expressing anger about the policy decisions made by governments to wind back public health measures, such as mask mandates in public places.
I am very anxious about re-infection as it would mean another three months of hell if I suffered the same symptoms again. It has made social interaction very difficult as I’m continually scared of contracting the virus again and the ongoing implication of being unwell for a long period. My mental health has suffered greatly as a result.
I am socially isolated; I don’t mix with family of friends. Doctors have advised that I can’t afford to get COVID again, colds or flus… I don’t go anywhere other than to get my groceries or take my two little dogs to the vet when required. I was perfectly heathy until I became infected with COVID and then Long Covid.
The submissions make many suggestions on how to reduce the incidence of Long COVID and to improve treatment and support for people with this condition, as summarised below.
Research and data
- Clear, transparent and actionable national data detailing cases of acute and LC
- Clinical trials and large scale studies funded rapidly to produce potential treatments.
- Research to develop a guide for GPs or patients of which symptoms can be treated or managed in which manner.
- Research into the economic impact of LC
- Clinical trials in Australia and collaboration with international efforts to expedite access to new treatments in Australia
- The reinstatement of COVID-19 as a reportable disease
- An opt-in (or de-identified) register or database of Australian Long COVID sufferers including details such as the number and geographic spread of sufferers; · symptoms; duration; strain of COVID contracted; and treatment received
- Increased linkage between research and treatment for LC.
Treatment and health system support
- Provide patient-centred, evidence-based guidelines and support for GPs in keeping with international best practice
- Funding for centres of excellence both in care and research
- Access to Long Covid Clinics
- Access to Medications, including antivirals.
- A review by TGA of off-label prescribing for LC
- Many of the drugs we have been told to try by medical professionals are expensive as we need to pay full price for off-label treatment. Could the TGA update the list of on-label uses of these medications to reflect that some LC sufferers benefit from these treatments, and there is no LC specific drug to try instead.
- Medicare rebates for telehealth consultations for LC patients without the 12 month in person restriction
- Support for an interdisciplinary approach to treat LC including Neurological, Respiratory, Immunological, Rheumatology, Metabolic/ Endocrine, Pain management and allied health
- Mental health plan support for people with LC to access psychologists
- ATAGI reviews of immunisation recommendations for people with LC
- Amyloid clotting testing to assess the risk of coagulation and amyloid clotting in people with LC
- Increased recognition of the neurological impacts of LC, including understanding that some patients may not be fit on a particular day to make medical decisions for themselves
- Changes to Commonwealth-state hospital funding to accommodate increased demand due to Covid and LC
- Increased provision of primary health care respiratory clinics
- Provision of COVID-safe healthcare
- Funding for group therapy and support groups
- Recognition of patient expertise is a tremendous resource and have lived experience at the table where decisions are made.
I would like to see GPs provided with a clear pathway to manage patients. My GP did not know there was a Long COVID clinic. My daughter-in-law obtained the referral form from a specialist we were attending and noted that in order to triage patients the GP would need to order a suite of tests before the form could be submitted.
I would like to see GPs provided with more information on symptomatic treatments for the multifarious problems LC patients may present with. And information on pacing, which I am only now beginning to realise may stop, or at least damp, this endless roller coaster of doing too much and crashing with a huge flare up of symptoms.
Public health measures
- Evidence-based mitigation strategies including improved indoor air quality in businesses/schools/offices/restaurants/cafes
- Mandated requirements that all indoor spaces have ventilation at the standard of 6ACH or less
- CO2 monitors to be required in all indoor spaces including classrooms and the levels to be made public to anyone who has a child or who needs to access the space
- Public transport to be held to the same ventilation requirements as indoor spaces
- The re-introduction of mask mandates in schools and other indoor areas without adequate ventilation.
I am terrified that I may contract the virus again and I often think I may not survive it a second time. I work in a school – a high-risk environment…most of my faculty and a large number of students at my school have been sick with COVID-19, with some contracting it two or three times. Yet very few of my colleagues and virtually no students wear a mask because the Federal and NSW Governments have told them it is not mandatory.
- Inclusive and accessible public education campaigns on the risks of LC and on how to reduce transmission
- Messaging from public health leaders and politicians about LC
- Leadership from politicians and other in the public eye on Covid-safe practices and environments
- Evidence-based education resources about LC for doctors to give patients
- Information about how to better support friends/ family/ colleagues with LC.
We need strategies for public awareness, and campaigns for prevention of COVID infections. People still do not understand what is at stake, that they can contract COVID and become chronically ill permanently, with no medical treatment or financial/social support to assist them.
Benefits and support for people with LC, especially those in insecure employment, those with dependent children, and those who will benefit from early access to antivirals
- Recognition of LC as a disability so people are eligible for Centrelink benefits
- Financial support for those Long Covid sufferers who are employed and have likely run out of sick leave and holiday leave
- Practical support such as childcare and food delivery services
- Assist and fund the LC community to create their own education and support organisation
- Better planning to address the care of people with LC who may be without the support, resources to attend healthcare
- Plans for single parents or sole caregivers who may get LC and be unable to undertake caring responsibilities
- Training for carers in post viral syndrome symptoms
- Preparations for increased accessibility and disability needs across Australia.
- Recognition of the life and health altering morbidity that Covid has caused, including a Day of Remembrance for those who didn’t survive Covid & those who have been severely affected.
“I would like humans to be treated as if we matter. Because at the moment we are not being treated like we matter at all.”
See Croakey’s archive of articles on consumer health matters