Q) I read about long Covid way back in the fall. What are the latest findings? I assume that our information has evolved with the passage of time as seems to be par for the course with Covid-19.
A) For a condition that we have been talking about for more than a year now and one that has garnered almost as much attention as the actual infection itself or its various vaccines, the syndrome known as long COVID (or post COVID syndrome or long-haulers) remains a bit of a mystery to academia. How poorly understood is it?
Well, here’s the official definition according to Britain’s esteemed NICE (their National Institute for Health and Care Excellence). They define long-COVID as a group of signs or symptoms that develop during or after an infection that is consistent with COVID-19 and that persist for longer than 12 weeks and cannot be otherwise explained by an alternative diagnosis. Well, could they be any less specific?
Note the absence of any symptoms or other diagnostic criteria other than its minimum specified duration. It is difficult to come up with another diagnosis that is remotely as vague as that. And to think this comes from a really exceptional institution. This all speaks to just how poorly understood this disorder is right now and that is without a doubt a very scary proposition. Why is that you ask?
Well, based on a recent study released in June originating from the UK, it is estimated that more than two million people in England may be suffering from this condition presently. Just over 508,000 random people were surveyed and nearly 6% reported suffering from at least one of 29 possible long COVID symptoms for greater than three months (when this percentage is applied to the whole of the English population, then the number equates to roughly 2 million).
For those respondents who believed they had actually been infected with COVID-19 at some point in time, it was found that more than 1/3 were still dealing with symptoms three months later. The scary reality about those numbers is that other surveys have shown that 80% of those affected by long COVID find that their ability to work has been hampered and 40% feel that it has impacted their ability to care for others. Obviously, long Covid is not just a problem for those affected by it, it’s a major issue for everyone when you consider lost familial support, lost productivity and the massive amount of tax dollars that will be consumed in rehabilitating and caring for those affected. This is, quite possibly, a looming healthcare catastrophe.
The survey painted a very broad picture of those who are most likely to be impacted by long COVID. According to the researchers, those most at risk include the aged, the overweight, women, smokers, those who lived in “deprived” areas and those who had to be admitted previously to a hospital during the acute phase of the infection. But even this information appears contradictory as previous studies had put the average median age at 45 (which many people absolutely refuse to classify as aged!!!) and had pointed to the average person seeking help as being relatively affluent.
Perhaps some of this confusion is arising from the fact that we may not be doing a very good job of actually recording this disorder. According to researchers from Oxford University in England (yes, England is strong in research with respect to Covid among other topics but their soccer team ….) when the medical records of nearly 58 million Brits were examined, they found that a formal diagnosis of long COVID was noted nearly 100 times less commonly than they had expected based on the survey we were just speaking about. This is a truly extraordinary discrepancy.
There are multiple possible explanations for this, including the possibility that patients may not have actually seen their family doctor about their symptoms, that GP’s may have set “the bar” to make such a diagnosis far too stringently, that some GP’s may be somewhat under-educated about this relatively new disorder or that they may have just failed to record the cases properly (apparently the proper terminology is disappointingly obscure).
Regardless, results such as this make this condition an even greater challenge since unless we know how common it is and who it impacts most often we will be unable to determine what resources will be required to manage this situation and which patients we should most carefully monitor. Even worse, this sort of under-reporting screams that there is a whole raft of people who are suffering and are not getting access to the help that they need.
So just how and in what ways are people suffering? Well, in a survey of 3,800 people taken globally, all of whom have had long COVID, the number of different symptoms mentioned was 205. That is a staggering number and speaks to the wide variance that this disorder seems to exemplify. Looking deeper into this survey, most respondents were typically suffering from multiple symptoms at a time but there were a few predominant ones that have served to divide long-haulers into three distinct groups.
The first were those who were dealing with an assortment of respiratory issues. These sorts of symptoms include shortness of breath, exercise intolerance, chest pain and a persistent cough. One unfortunate recipient reported that he would cough 10 plus hours a day and that this lasted for more than half a year. No wonder many report that their ability to earn a living is severely hampered.
Another main group is most defined by their cognitive type symptoms. These people suffer from effects such as brain fog (this is the term we use for when you are having difficulties with thinking straight, for lack of a better phrase to describe it), poor memory retention and fluency in finding the right word or the inability to pay attention and focus to whatever their normal standards might be.
The third group’s main battles seem to be with a dysfunction of their autonomic nervous system. This is an integral part of our peripheral nervous system (i.e. not the central nervous system which involves our brain and spinal cord), that is involved in regulating involuntary physiologic processes such as our heart rate, blood pressure, bowel and urinary systems, breathing, digestion and sexual arousal.
Many people with post COVID syndrome complain of related symptoms such as heart palpitations, various digestive issues, dizziness (seemingly related to wild fluctuations in their blood pressure) and numerous issues with their bladder and bowel movements. 80% of the 3,800 respondents listed symptoms in this category and it seems based on surveys that it is this set of side effects that are the most debilitating to the respondents.
Other common symptoms that perhaps do not fall neatly into any single one of these three categories include overwhelming fatigue, increased anxiety and depression, joint or muscle pain and changes to your sense of taste and smell.
To finish, here are two last bits of depressing news when it comes to long COVID. First, ninety percent of these respondents initially were not sick enough to warrant hospitalization. This means that you do not have be really sick with COVID-19 to acquire long COVID.
Secondly, more than half reported their symptoms lasted more than six months, clearly indicating that the stated 12 week diagnostic criteria is far from an upper limit as to how long this disorder can go. Sometime in the next several weeks we will discuss how doctors are treating long COVID, what might be the biochemical cause of this disorder and how we are now spotting this disease in children. For more information about this or any other health related questions, contact your pharmacist.