IF I wanted to make a name for myself by classifying a new medical condition and publishing my results in a reputable scientific or medical journal I would expect a fair degree of scrutiny. I would expect questions about the precision of my diagnosis, and what laboratory tests confirmed the existence of the condition, as distinct from other similar conditions. And, if I was claiming that I knew the cause, how strong the link to that purported cause was.
I could endeavour to address these criteria in advance or as my work was being reviewed. Alternatively, I could just make it all up and hope for the best when it came to the point of submitting my work for scrutiny. I could simply: assume that the cause was something which preceded the onset of the symptoms I was ascribing to the new condition; I could draw up such a lengthy and disparate list of potential symptoms that almost anyone could have the condition; I could take people’s word that they had those symptoms; and I could conveniently ignore any confounding factors such as other life events and medical interventions that preceded the onset of my fictional condition.
I doubt I would get away with it. But in my view that is precisely what the long covid lobby have done. They appear to have committed every one of the deceits listed above.
In Global Health Now, recently, there was an article saying: ‘Long COVID continues to impose “a significant burden” on survivors’ physical and mental health post-infection, finds a new study published in PLOS One—with patients self-reporting compromised health and daily task efficiency for 13+ days a month. CIDRAP’
The study titled ‘The health-related quality of life among survivors with post-COVID conditions in the United States’ investigated the impact of post-covid conditions (PCCs), commonly known as long covid, on health-related quality of life (HRQL). The analysis was based on data from the Centers for Disease Control and Prevention’s 2022 Behavioral Risk Factor Surveillance System, a large, nationally representative survey.
Covid-19 cases were included in the study only if the diagnosis had been confirmed by a healthcare professional. Individuals who reported a covid-19 diagnosis based solely on home tests were excluded.
The precise criteria whereby healthcare professionals arrived at a covid-19 diagnosis were not detailed. While healthcare professional confirmation implies some form of clinical testing or assessment, in some clinical settings, diagnosis may also rely on physical examination and epidemiological factors. It is notable that the ‘healthcare professionals’ were not defined either. Did they, for example, include medical receptionists and allied health professionals?
Long covid in the study was identified through self-report. Participants were asked whether they had experienced symptoms which lasted for three months or longer and were not present before their covid-19 infection. This approach was consistent with the U.S. Department of Health and Human Services (HHS) and CDC definitions of post-covid conditions. Those who responded ‘yes’ were then asked to indicate their primary symptom from a predefined list.
The study classified long covid symptoms into 11 categories: fatigue, brain fog, dyspnoea (shortness of breath), musculoskeletal pain, heart palpitations, dizziness on standing, mood disorders, loss of taste or smell, post-physical exertion fatigue, post-exertional malaise, and a general ‘other symptoms’ category. An additional 12th option allowed participants to indicate that they experienced no activity-limiting symptom.
One notable limitation of the study was the lack of data on participants’ covid-19 vaccination status. The authors acknowledged that this information was largely unavailable and therefore not included in the analysis. This limits the ability to assess whether vaccination influenced the likelihood or severity of post-covid conditions.
It seems remarkable that covid-19 vaccination status data were not available given the ease with which the participants were found from the database. It is not clear if data on vaccination status was available at all on the database or if recording was patchy. I am no expert; but it seems to me that it would have been remarkably easy to obtain information on participants’ vaccination status by adding a 13th question: ‘have you been given a covid-19 vaccine?’ The retort would probably be about such self-reporting of vaccine status as being unreliable regardless of how unreliable self-reports of unverifiable symptoms such as ‘dizziness’, ‘mood disorders’ or ‘other symptoms’ are.
We have indicated in these pages that there is both evidence and expert opinion that the covid vaccines may be responsible for some cases of ‘long covid’. But there appears to be no systematic research aimed at verifying the link. This may be deliberate on behalf of pro-covid vaccine researchers, or it may be that any suggestion of a link sounds the death knell for funding applications.
This study exemplifies a broader trend in contemporary public health research: privileging subjective experience over clinical verification and neglecting potentially critical confounding factors, such as vaccination status, that may reshape the interpretation of symptoms attributed to long covid. If such omissions persist, the findings must be treated with caution, and the scientific basis for long covid will remain, at best, uncertain.
