Long COVID diagnosis ‘validation’ for suffering patients

Michelle Wisbey

19/03/2024 3:58:46 PM

A GP expert is speaking out after Queensland’s CHO said the term ‘long COVID’ can cause ‘unnecessary fear’ and should be scrapped.

Female doctor holding stethoscope to patient.
Up to 10% of Australian COVID-19 patients reported symptoms lasting for more than three months.

The contentious conclusions of a new long COVID study have left a number of experts concerned, after Queensland’s top health official declared there is nothing ‘unique and exceptional’ about the virus’ long-term symptoms.
The Queensland Health study says it is time to stop using the term ‘long COVID’ as it has potential to cause unnecessary fear and hypervigilance, which can impede recovery.
Compared to influenza and other respiratory illnesses during the Omicron wave, the study found no evidence of worse post-viral symptoms or functional impairment in the long term.
For the study, Queensland researchers questioned 5112 participants one year after their PCR test, asking about their ongoing symptoms and degree of functional impairment – 2399 of whom were COVID-positive and 2713 tested negative.
Around 16% of respondents reported ongoing symptoms a year later, and 3.6% reported moderate-to-severe functional impairment in their activities of daily life.
The study concluded there was no evidence COVID-positive adults were more likely to have moderate-to-severe functional limitations a year after their diagnosis than symptomatic adults who tested negative for the virus (3% vs 4.1%).
Researcher and Queensland’s Chief Health Officer Dr John Gerrard said this shows the importance of comparing post-COVID outcomes with those following other respiratory infections.
‘In health systems with highly vaccinated populations, long COVID may have appeared to be a distinct and severe illness because of high volumes of COVID-19 cases during the pandemic,’ he said.
‘However, we found that the rates of ongoing symptoms and functional impairment are indistinguishable from other post-viral illnesses.
‘Furthermore, we believe it is time to stop using terms like “long COVID”. They wrongly imply there is something unique and exceptional about longer-term symptoms associated with this virus.’
Dr Gerrard told the ABC he is not disputing the symptoms of long COVID, rather, that their incidence is no greater than it is in other respiratory viruses.
But Dr Bernard Shiu, who runs several long COVID clinics from his Victorian practices, told newsGP it is important to recognise long COVID is real, as are all post-viral sequelae conditions.
‘By properly diagnosing patients with long COVID, it acknowledges and validates their suffering,’ he said.
‘As doctors and scientists, we need to be faithful and truthful in what we are dealing with.
‘Using the term “long COVID” appropriately and explaining to the patient about the nature of it being closely related to other post-viral conditions forms part of our duty of care.’
The study comes as Australian Health and Welfare Institute Data says up to 10% of COVID-19 cases in Australia reported symptoms persisting for more than three months.
And Dr Shiu said despite long COVID sharing many similarities with other conditions, each patient is unique.
‘By saying long COVID is not unique, we are almost saying COVID-19 itself is not unique. I think that’s an understatement,’ he said.
‘Symptoms we have observed in our clinic that impact the patients the most are fatigue, brain fog, persistent cough, breathlessness, and abnormal heart rhythm causing dizziness.
‘It is important to highlight the need to care for these patients and not to downplay their suffering.’
Meanwhile, Australian National Phenome Centre Director Professor Jeremy Nicholson said it remains unknown as to whether long COVID is physiologically or mechanistically different to other post-viral syndromes.
‘This is important because such pathophysiological mechanistic knowledge is relevant to developing therapies for any post-viral syndrome, including long COVID,’ he said.

‘Until this is resolved, we should still use the “long COVID” term because it pinpoints exactly the underlying viral cause for a given individual.

‘We also know that many patients have persistent and profoundly different metabolic biochemistries after acute SARS-CoV-2 infections and beyond, which indicates ongoing systemic immuno-metabolic disturbances.’
The Queensland Health paper was released amid growing calls for more investment in long COVID research and treatment, including multidisciplinary clinics with virtual access and living guidelines.
Several specialist long COVID clinics have already been closed or scaled back across the country.
Dr Shiu said much more needs to be done to help long COVID patients, with many feeling the rest of the world is moving on without them.
‘In many ways, things are returning to a “new normal” as more and more people have learned how to cope with this condition, but the ongoing impact of COVID-19 … is yet to be fully understood,’ he said.
‘We need to put more effort into evidence-based research on long COVID before a conclusive decision should be made regarding the care to the patients, including the naming of this condition.
‘We must do all that we can to help those who are at risk of suffering from a more severe consequence from it.’
The research will be released in full at the European Congress of Clinical Microbiology and Infectious Diseases in Spain next month.
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Dr Angela Catanzariti   20/03/2024 6:13:15 AM

Do we see autonomic dysfunction, insomnia, brain fog, chronic fatigue, chest pain and chronic respiratory symptoms after most viral URTIs?
Long Covid exists! It is a real problem and a significant portion of the population is suffering. Acupuncture is excellent at treating this condition. We need increased awareness so we can help those affected.

Dr Carli Joy Westmore   20/03/2024 8:56:14 AM

This QLD backward notion that Long COVID (aka very a well rescruched and significantis disease - attributed to autoimmune brain injury that shows up biologically in blood tests and on brain scans) is not real or unique and is just like any other vague - post vital issues, is one of the most unscientific, shameful and harmful stab at patients (may of whom are in fact doctors themselves contracted sever COVID-19 and were left with debilitating Long COVID). Such an unscientific media slang undermining the importance of this condition and it's need for further research, care, tretament, prevention and overall medical and brouder community understanding.
If we took this same approach for example to Type 1 Diabetes we could similarly survey tens of thousands of children and young people post vital illness (Human Enteroviruses HEVs and others) and sumise wrongly that because only a small percent report S&S of T1DM that this does not exist or is no different statistically to post vitals

Dr Carli Joy Westmore   20/03/2024 8:58:23 AM

Part 2:

...but we would be dangerously wrong and we would be causinf great harm to those who do developed T1DM, not to mention crippling it's resurch and carlessly creating stigma against those who suffer with T1DM. This is one of the first moments in my life I have been ashamed of the misbehavior and lack of professionalism of an Australian doctor reprosenting my profession. This needs to be addressed and rebutted robustly by our entire profession before futher harm is done.

Dr Ian Rivlin   20/03/2024 9:19:52 AM

This is the sad sign of our ever increasingly fragile society. It's verboten to even tell the patient what they have, lest we upset them.
Patients cope better when they understand better...
Sanitising all speech,to avoid touching raw nerves is nonsense.
Long covid is real. It isn't our job to withhold information about this disease. Any doctor who feels otherwise might be best considering another profession, if he or she can't bring themselves to be honest, direct, professional and open with their patients.
20 years ago, I would have said that keeping this kind of information hidden from patients was a desertion of our moral standards. It's astonishing that we are even discussing such things nowadays.

A.Prof Christopher David Hogan   20/03/2024 1:13:41 PM

We gain knowledge in Medicine by observation & interpretation then by debating the significance of those findings.
Acceptance of a theory without challenging it helps no one & leads us into the errors of groupthink & mutual delusion.
My initial reaction to this statement is to ask what is known about the impact of influenza.
The massive Covid induced expansion in the knowledge about virology & immunisation has lead to a massive rethink of what we thought we knew about the influenza .

Dr Kye Lyn Marisa Tan   20/03/2024 2:22:50 PM

Long COVID can be debilitating to the point that patients are unable to return to baseline and their usual work. Patients like these need income protection and ongoing rehabilitation. If Long COVID is downplayed, these patients will be dismissed and abandoned.

Dr C   20/03/2024 3:03:14 PM

Someone who runs several long covid clinics obviously has a vested interest in keeping the use of the term alive.
Dr Gerrard is not denying the symptoms, just stating based on the research, the symptoms of long covid are no different to other post-viral syndromes. What about these patients who can't access long covid clinics? Why not create post-viral syndrome clinics? Then everyone's suffering can be validated