Long COVID should make us rethink disability, and the way we offer support to those with 'invisible conditions' (2023)

Long COVID should make us rethink disability, and the way we offer support to those with 'invisible conditions' (1)

Australia has only a handful of specialists familiar with managing what happens when the nervous system can't properly regulate the body, as sometimes occurs with long COVID. While long COVID clinics are being set up, there are no government-funded clinics for this type of nervous system dysfunction and private waiting lists are now long.

From the outset, long-COVID sufferers faced the same prejudice experienced by patients before them who sought assistance through Centrelink and the National Disability Insurance Scheme for the effects of post-infection conditions.

Disability insurance schemes worldwide are driven by definitions and checklists that allow non-medical workforces to assess and approve candidates for support services. But those with "invisible illness" rarely meet these criteria.

If we are to manage the tidal wave of impairment and disability bearing down on us, policymakers must heed the warnings that have been sounding for the past two years. We'll need to rethink disability and support.

First warnings

In November 2020, data later published in The Lancet were presented to the Chinese Academy of Medical Sciences. The researchers warned of persistent symptoms after COVID, including fatigue, cognitive dysfunction, palpitations, chest pain, depression, insomnia and headache.

The colloquial term "long COVID" was soon coined. Varying iterations of the name followed (including "COVID long haulers" in the United States). Many clinicians use the more scientific descriptor, "Post-acute sequelae of COVID-19."

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Long COVID is not a new phenomenon. Various post-infection illnesses have been documented in medical literature for decades.

And such conditions bear a striking resemblance to each other. First, an individual is knowingly (or unknowingly) exposed to a pathogen (a virus, bacterium or other microorganism). An acute illness of varying degrees of severity ensues before a partial or complete recovery. But following "recovery," a broad range of symptoms emerge. And these lead to functional decline. In other words, they stop the sufferer from doing the daily activities they would normally be able to do.

Two of these conditions, postural orthostatic tachycardia syndrome and myalgic encephalomyelitis or chronic fatigue syndrome, appear closely related. And their symptoms look a lot like long COVID too. Both seem to affect more women than men and additional immune problems are often present.

These similarities support the theory these illnesses result from a hyper-vigilant immune system. This creates an immune response that inadvertently causes damage to the fragile autonomic nervous system (which regulates the body's normal functions like heart rate and blood pressure) while attempting to rid the body of the invading pathogen.

However, there are a plethora of other theories and more investigation is needed.

An old stigma

Lack of understanding about these syndromes is reflective of the broad stigmas attached to them—the idea they are psychosomatic and involve the mind and body.

The origin of these stigmas can be traced to a series of publications in the latter half of the 20th century that addressed outbreaks of illnesses after exposure to unknown pathogens.

In 1970, the British Medical Journal published an article authored by two psychiatrists who had reviewed the case notes of 198 patients from the Royal Free Hospital in North London, where an outbreak of an unknown pathogen had occurred 15 years prior. The authors determined the disease had no identifiable organic origin and was therefore likely to be caused by "epidemic hysteria." This conclusion was partly justified by the high proportion of women among those infected with the illness, the authors said.

Publication of this theory in a preeminent scientific medical journal gave credence to what became an enduring narrative. The result has been a chronic lack of interest and investment in these debilitating invisible illnesses, which can render people unable to work or participate in society.

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Having a very difficult long COVID day. Spontaneous tears, aching and panting after a trip to the loo, confused by dialogue—so much rewinding of whatever this is I'm watching. I was triple vaxxed when I caught it in May. Mask up. You're not immune.

— Adam Richard (@adamrichard) July 26, 2022

A question of definition

The burden of these systemic failings now weighs heavy on a society faced with a worldwide tsunami of post-COVID conditions. And it goes some way to explaining the collective shrugging of shoulders by health authorities when it comes to providing answers for sufferers.

Estimates of how many people infected with COVID go on to develop long COVID vary from 5–40%. The large variance is a result of the initial absence of a consistent or unifying set of diagnostic criteria.

Recently the World Health Organization provided a definition of post-COVID conditions. It includes those with a history of likely or confirmed infection with SARS-CoV-2 (the virus that causes COVID) who experience lingering symptoms for longer than two months, which are unexplained by an alternative diagnosis.

Defining the illness allows clearer characterization of who is affected. Long COVID is now known to affect any age group and may be unrelated to initial infection severity. This evidence prompted the US Centers for Disease Control and Prevention to detail an ominous warning about post-COVID health problems that "can last weeks, months, or years."

Multiple case series and observational studies have now identified a high burden of nervous system dysfunction in long COVID patients. Several studies, including one published in the Journal of the American College of Cardiology, demonstrated up to 95% of long-COVID patients also meet the international criteria for postural orthostatic tachycardia syndrome. This syndrome can cause lightheadedness, brain fog, fatigue, headache, blurred vision, palpitations, tremor and nausea.

These symptoms often are often incompatible with carrying out normal daily tasks, which explains why unemployment and disability are high among postural orthostatic tachycardia syndrome patients, despite their young age.

The next wave

Back in March 2021, the American Autonomic Society released a statement warning of the rising presentations of patients to autonomic specialist referral centers with symptoms of post-COVID postural orthostatic tachycardia syndrome. Of particular concern was the insufficient number of physicians familiar with this type of dysfunction to treat the condition.

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This situation is mirrored in Australia where only a handful of specialists are familiar with managing such complex cases.

Contrary to popular medical opinion and widely held beliefs, effective therapies exist for underlying conditions like postural orthostatic tachycardia syndrome, which is prevalent in long COVID. Early intervention is key. Treatment needs to be fully explored and implemented before disability support services can be sought.

Time to listen

Our health systems need to absolve themselves of past sins and pay attention to the overwhelming voice of the current sufferers of long COVID and those with other post-infection syndromes or invisible illnesses who have endured decades of medical neglect.

Treatment options need to be made available and multidisciplinary teams need to upskill to manage these conditions.

A redefining of what it is to be disabled needs to be explored. Most importantly, these definitions should not be tied to a single cause but to the manifestation of symptoms that culminate in the disability.

Journal information:The Lancet

, British Medical Journal (BMJ)

, Journal of the American College of Cardiology

Provided byThe Conversation

This article is republished from The Conversation under a Creative Commons license. Read the original article.Long COVID should make us rethink disability, and the way we offer support to those with 'invisible conditions' (2)

Citation: Long COVID should make us rethink disability, and the way we offer support to those with 'invisible conditions' (2022, August 1) retrieved 29 August 2022 from https://medicalxpress.com/news/2022-08-covid-rethink-disability-invisible-conditions.html

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FAQs

Who are at higher risk of developing serious illness from COVID-19? ›

Older people, and those with underlying medical problems like cardiovascular disease, diabetes, chronic respiratory disease, and cancer are more likely to develop serious illness.

What are some common "Long COVID" symptoms in the UK? ›

The most common long COVID symptoms were fatigue (62% of those with self-reported long COVID), shortness of breath (37%), difficulty concentrating (33%) and muscle ache (31%).

How serious is COVID-19 usually for most children? ›

For most children and young people, these illnesses will not be serious, and they will soon recover following rest and plenty of fluids.

What are some preventative measures for COVID-19? ›

Preventive measures include physical or social distancing, quarantining, ventilation of indoor spaces, covering coughs and sneezes, hand washing, and keeping unwashed hands away from the face. The use of face masks or coverings has been recommended in public settings to minimise the risk of transmissions.

Can excess weight increase risk of serious illness from COVID-19? ›

Excess fat can affect the respiratory system and is likely to affect inflammatory and immune function. This can impact people’s response to infection and increase vulnerability to severe symptoms of COVID-19. Obese people may be less likely to access healthcare and support, and it is also thought that COVID-19 affects other diseases associated with obesity.

Are smokers at risk to the coronavirus disease? ›

A small but highly impactful survey from China finds that smokers with COVID-19 are 14 times more likely to develop severe disease. In addition, the repetitive hand to mouth movement provides an easy route of entry for the virus, putting smokers at greater risk of contracting COVID-19.

Can "severe" COVID-19 potentially cause lasting cognitive and mental health problems in rare cases? ›

Cognitive impacts There is growing evidence that COVID-19 can cause lasting cognitive and mental health problems, with recovered patients reporting symptoms including fatigue, brain fog, problems recalling words, sleep disturbances, anxiety and even post-traumatic stress disorder (PTSD) months after infection.

What are the most common adverse reactions to the COVID-19 vaccine? ›

The most frequent adverse reactions in trials were pain at the injection site, fatigue, headache, myalgia (muscle pains), chills, arthralgia (joint pains), and fever; these were each reported in more than 1 in 10 people.

Can you take ibuprofen if you have the coronavirus disease? ›

Patients can take paracetamol or ibuprofen when self-medicating for symptoms of COVID-19, such as fever and headache, and should follow NHS advice if they have any questions or if symptoms get worse.

Are overweight people more likely to get COVID-19? ›

The current evidence does not suggest that having excess weight increases people's chances of contracting COVID-19. However, the data does show that obese people are significantly more likely to become seriously ill and be admitted to intensive care with COVID-19 compared to those with a healthy BMI.

How long should I exercise for during quarantine? ›

Physical activity and relaxation techniques can be valuable tools to help you remain calm and continue to protect your health during this time. WHO recommends 150 minutes of moderate-intensity or 75 minutes of vigorous-intensity physical activity per week, or a combination of both.

Are smokers at higher risk of developing severe respiratory disease from COVID-19? ›

The evidence clearly shows COVID-19 virus attacks the respiratory system, which explains why smokers are at greater risk. A small but highly impactful survey from China finds that smokers with COVID-19 are 14 times more likely to develop severe disease.

How long can possible COVID-19 vaccine side effects last? ›

Side effects generally go away in a few days. Even if you dont experience any side effects, your body is building protection against the virus that causes COVID-19. Adverse events (serious health problems) are rare but can cause long-term health problems.

What is COVID-19 genomic sequencing? ›

Genomic sequencing is laboratory analysis that identifies a virus's genetic make-up, allowing new variants or mutations in existing variants to be detected.

What is Every Mind Matters in the context of COVID-19 pandemic? ›

Every Mind Matters provides simple NHS-approved tips and advice to start taking better care of your mental health. If you are still struggling after several weeks and it is affecting your daily life, please contact NHS 111 online.

Are there any side effects from the COVID-19 vaccines? ›

Like all medicines, the COVID-19 vaccines can cause side effects, but not everyone gets them. Most side effects are mild and should not last longer than a week, such as: a sore arm from the injection.

Is Pfizer COVID-19 booster safe? ›

Yes, booster shots are proven to be safe. Pfizer released a study of 10,000 participants in which half of them received a booster dose and half a placebo. In terms of safety, they found no new adverse events, meaning it was consistent with what has been seen in previous studies.

What is the best household disinfectant for surfaces during COVID-19? ›

Regular household cleaning and disinfection products will effectively eliminate the virus from household surfaces. For cleaning and disinfecting households with suspected or confirmed COVID19, surface virucidal disinfectants, such as 0.05% sodium hypochlorite (NaClO) and products based on ethanol (at least 70%), should be used.

How serious is COVID-19 usually for most children? ›

For most children and young people, these illnesses will not be serious, and they will soon recover following rest and plenty of fluids.

Can I develop immunity to COVID-19 after testing positive for PCR? ›

If you have previously tested positive for COVID-19, you will probably have developed some immunity to the disease. However, it cannot be guaranteed that everyone will develop immunity, or how long it will last. It is possible for PCR tests to remain positive for some time after COVID-19 infection.

How many doses of the COVID-19 vaccine do 16 year olds need? ›

The NHS is offering COVID-19 vaccine to some children and young people. This includes those aged 12 to 17 years who need 2 doses of the vaccine 12 weeks apart or 8 weeks apart if at increased risk. All young people aged 16 and 17 years and at risk children aged 12 to 15 will be offered a booster dose 12 weeks after the second dose.

Is AstraZeneca COVID-19 vaccine recommended for children? ›

COVID-19 Vaccine AstraZeneca is not recommended for children aged below 18 years. No data are currently available on the use of COVID-19 Vaccine AstraZeneca in children and adolescents younger than 18 years of age.

Do I have to sanitise food packaging? ›

Food packaging If you have been shopping, there should be no need to sanitise the outer packaging of food. This is because food businesses are required to have a system for managing food safety in place, which should include keeping packaging clean. You should still follow good hygiene practice by washing your hands after handling any outer packaging.

What are some preventative measures for COVID-19? ›

Preventive measures include physical or social distancing, quarantining, ventilation of indoor spaces, covering coughs and sneezes, hand washing, and keeping unwashed hands away from the face. The use of face masks or coverings has been recommended in public settings to minimise the risk of transmissions.

Are smokers at higher risk of developing severe respiratory disease from COVID-19? ›

The evidence clearly shows COVID-19 virus attacks the respiratory system, which explains why smokers are at greater risk. A small but highly impactful survey from China finds that smokers with COVID-19 are 14 times more likely to develop severe disease.

Can you take ibuprofen if you have the coronavirus disease? ›

Patients can take paracetamol or ibuprofen when self-medicating for symptoms of COVID-19, such as fever and headache, and should follow NHS advice if they have any questions or if symptoms get worse.

What are the most common adverse reactions to the COVID-19 vaccine? ›

The most frequent adverse reactions in trials were pain at the injection site, fatigue, headache, myalgia (muscle pains), chills, arthralgia (joint pains), and fever; these were each reported in more than 1 in 10 people.

Does shisha smoking or sharing a mouthpiece increase the risk of COVID-19 infections? ›

Shisha smoking carries all the health risks of smoking, and sharing the mouthpiece greatly increases the risk of spreading COVID-19. PHE strongly advises against sharing any smoking devices.

What is the best household disinfectant for surfaces during COVID-19? ›

Regular household cleaning and disinfection products will effectively eliminate the virus from household surfaces. For cleaning and disinfecting households with suspected or confirmed COVID19, surface virucidal disinfectants, such as 0.05% sodium hypochlorite (NaClO) and products based on ethanol (at least 70%), should be used.

What should I do if I have a positive COVID-19 test? ›

If you have a positive COVID-19 test result, try to stay at home and avoid contact with other people for 5 days after the day you took your test.

How long does the virus that causes COVID-19 last on surfaces? ›

Recent research evaluated the survival of the COVID-19 virus on different surfaces and reported that the virus can remain viable for up to 72 hours on plastic and stainless steel, up to four hours on copper, and up to 24 hours on cardboard.

Videos

1. Disability Awareness | StanfordMed LIVE - 21 October 2020
(Stanford Medicine)
2. Inclusive science communication: from rethinking images to a global movement
(The International Society for Neglected Tropical Diseases)
3. Rethinking wellness: COVID-19 and the search for meaning
(American Medical Association (AMA))
4. The Long 2020: Daniel Barber, Beatriz Colomina, and David Gissen | April 23, 2021
(Center for 21st Century Studies)
5. Adapting for individuals: creating inclusive workforces in the era of hybrid working
(Global Government Forum)
6. Reducing Inequalities in Mental Health, Learning Disabilities and Autism Populations
(NHS South East Clinical Delivery and Networks)
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