Professor Stebbings in his Sunday weekly article looks at various issues surrounding this difficult subject. He surmises that as a whole, the world was slow to recognise long COVID as one of the most serious consequences of the pandemic. Long COVID is now written into CDC and WHO documents and even appears in the newest version of President Joe Biden’s national COVID-19 preparedness plan.
It is still unknown which individuals are most at risk or how long the condition might last.
It is not known whether certain variants might cause it more frequently or to the extent at which vaccines might help to sweep it away or not. We do not have a way to fully prevent it. We do not have a cure and we do not really even have a way to quantify it.
There is no consensus on how common long COVID is.
Millions of people have already developed long COVID and many of them have not recovered. This is the challenge of chronic illness.
Long COVID is really an umbrella term for diseases that are related that require distinct diagnoses and treatment.
Long COVID has hundreds of possible symptoms. This condition can start from a silent infection, an ICU case or anything in between. It can begin days, weeks or months after the virus first infects someone and its severity can fluctuate with time.
A study from UK primary care practices found that the risk factors for long COVID included:
- Female sex, belonging to an ethnic minority
- Socioeconomic deprivation
- Smoking
- Obesity and a wide range of comorbidities.
The risk of developing long COVID was also found to be increased along the gradient of decreasing age.
The comorbidities with the largest associations were:
- Chronic obstructive pulmonary disease
- Benign prostatic hyperplasia
- Fibromyalgia
- Erectile dysfunction
- Depression
- Migraine
- Multiple sclerosis
- Coeliac disease and learning disability.
The condition’s root causes, accordingly, are also diverse.
In some cases long COVID may be collateral damage from the war waged between the immune system and the virus.
In others, it might sprout out of chronic SARS-CoV-2 infection or a quick viral encounter that sets bodily systems into activity.
These hypotheses are not comprehensive or mutually exclusive: There are only so many ways that a body can react.
As a result of this, even diagnosing long-COVID is difficult, there is no clear cut consensus clinical definition.
The number of people who develop long COVID following exposure is also unknown.
Some researchers feel that it is only a small percentage of individuals who develop long-COVID, others favour bigger numbers.
Professor Stebbing suggests that it is in the 10-30% range. The risk is definitely higher in those who need hospitalisation or ICU.
Also heavier and more frequent viral encounters seem to tip the scales toward symptoms which last.
Studies appear to show that vaccination before SARS-CoV-2 infection could reduce the risk of subsequent long COVID. However, the impact of vaccination in people with existing long COVID symptoms is still controversial with some data showing changes in symptoms and others not.
Other interventions which lower exposure also help such as masks, distancing, and ventilation. They do not, however, eliminate long COVID, so far no one has found any demographic that has been spared from the condition.
Most countries do not keep incidence number of long COVID cases. Some 2% of everyone in the UK may currently have long COVID. Further analysis estimates that
23 million Americans have developed the condition.
As research continues, more studies emerge documenting how Coronavirus has altered the function of vital organs such as the heart and the brain. With vaccination, the public have been engineered to think that most SARS-CoV-2 infections are now trivial and repercussions brief. However, long COVID breaks this.
Similar to long COVID, ME, myalgic encephalitis/chronic fatigue syndrome (ME/CFS), involves a panoply of debilitating symptoms that affect many organ systems and that get worse with exertion.
It affects about 836,000 to 2.5 million people in the US alone but it is so misunderstood and stigmatised that 90% of people who have it have never been diagnosed.
At best, most medical professionals know little about it. At worst, they tell patients that their symptoms are psychosomatic, anxiety induced or simply signs of laziness. Whilst ME/CFS patients have spent years fighting for medical legitimacy, the Coronavirus pandemic has now forced the issue.
A wide variety of infections can cause ME/CFS and SARS-CoV-2 is no different. Many cases of long-COVID are effectively ME/CFS by another name.
The exact number is hard to define, but past studies have shown that 5-27% of people infected by various pathogens, including Epstein-Barr virus and the original SARS, develop ME/CFS.
Even if that proportion is 10 times lower for SARS-CoV-2, the number of Americans with ME/CFS will still have doubled in the past three years. The disease is so poorly understood by the medical profession that when a coalition was convened in America in 2018, there were only about a dozen doctors who understood the condition and the youngest one was aged 60.
The hallmark symptom of ME/CFS, post-exertional malaise or PEM means that even light physical or mental exertion can trigger major crashes that exacerbate every other symptom. Doctors who are familiar with PEM, including many who may now be running long COVID clinics, can unwittingly hurt their patients by encouraging them to exercise. Doctors with the most experience have actually had the disease themselves or have family members who have succumbed to it.
The director of the scientific and medical outreach at the MEA Action Group, Jaime Seltzer specifies that the condition’s root causes can also lead to several distinct but interlocking diseases, fibromyalgia, dysautonomia usually manifesting as POTS and several autoimmune and gastrointestinal disorders. These syndromes collectively afflict many organ systems, which can baffle doctors who normally are specialised in just one. These syndromes affect women more and this is subject to medicine’s longstanding bias, which minimises or psychologizes women’s pain. For example, an average female with Ehlers-Danlos syndrome can take 16 years before a diagnosis is made while a male may only take four.
People with long-COVID might have many of these conditions and do not know about any, probably or sometimes because their doctors do not either.
ME/CFS has no cure but it can be managed through simple inexpensive interventions that can be done within primary care. Over the counter antihistamines can help patients with inflammatory problems such as mast cell activation syndrome. Low dose naltrexone commonly used for addiction disorders can help those with intense pain. Simple rarely used tests can show if patients have orthostatic intolerance, a blood flow problem that worsens other symptoms when people stand or sit up right. Most important, teaching patients about pacing, carefully sensing and managing their energy levels can prevent debilitating crashes. Patients do not go to an ME/CFS clinic for gout in remission, they go to become stabilised.
The diagnosis and being believed in ME/CFS patients is not the whole issue, therapeutics are needed that target the root cause of the disease and this requires a clear understanding of its causes. This will require coordinated, well-funded research. Doctors need better education.
Long COVID requires education, experience, research and primarily the understanding that this is a diagnosis which patients have.
It requires a multidisciplinary team to help.
The London General Practice, the leading London doctors’ clinic, has brought together a multidisciplinary team to help, diagnose, review and refer to those patients who are suffering with all symptoms of COVID infection.
Dr Paul Ettlinger
BM, DRCOG, FRCGP, FRIPH, DOccMed