MY DAUGHTER is among other people who suffer from an affably complex chronic condition which looks remarkably similar to one that now threatens COVID-19 survivors’ long-term welfare.
Reports of COVID-19 survivors who are unable to return to normal life due to constellations of symptoms such as exhaustion, joint pain, trouble breathing and thinking or concentrating have been reported in recent weeks. The “long-haul patient” deals with problems the survivors of the serious acute respiratory syndrome, a disease known as SARS, have previously seen.
Those signs are very well known to those of us who have myalgic encephalomyelitis / chronic fatigue syndrome or ME / CFS or care for them. According to the Disease Control and Prevention Centers and the Institute of Medicine research, the ME / CFS disease affects up to 2,5 million Americans and is a severe, invalid disease. This causes intense fatigue and multiple systemic effects that reduce pre-illness habits for at least six months. Health expenses and lost sales cost the US economy up to 24 billion dollars annually.
ME / CFS symptoms often escalate following physical, mental or emotional activity. Although the aetiology of the disease is uncertain, and it is still too early to identify COVID survivors with ME/CFS, individuals with “post-COVID-19 syndrome” have already confirmed that they are unable to perform basic everyday activities for months following an acute infection.
The lack of knowledge of ME / CFS has sadly contributed to an insufficient education of doctors about the disorder and a lack of satisfaction with the needs of patients. In fact, about 70 per cent of patients in one 2012 study had to see at least three doctors before getting a ME / CFS diagnosis or related disease. Nevertheless, nearly 90 per cent of patients with the disorder remain undiagnosed, partially due to specialists’ geographical or financial access barriers.
I can relate to the struggles that people with ME / CFS face as a doctor and a patient’s mother. Once my daughter developed mysterious symptoms, neither her multiple doctors nor I could link the distinctions of anything that went wrong with her safety. By the age of 14, she displayed ambiguous gastrointestinal symptoms and never suggested an underlying cause or the likelihood of ME / CFS despite experiencing new endocrine and autoimmune disorders. It took 8 years for her to identify and diagnose the more common symptoms of ME / SFC, another year to realize that mould contamination was a significant trigger and a further year to demonstrate that her immune system had become hypervigilant and released inflammatory substances that triggered many of her symptoms.
The reports of those with ME / CFS symptoms following COVID-19 leaves me with mixed emotions. At the one hand, I fear the potential for highly devastating long-term effects for thousands of people and the economy. Nonetheless, I believe this will give us the ability, data and attention to better understand the roots and the knowledge of ME / CFS and to pave the way for broader studies into ways to fix it.
Certainly, over the years there have been calls to develop centres of excellence to strengthen our care of ME / CFS patients. Unfortunately, the effect of these initiatives on public perception or study has been minimal.
Nevertheless, several researchers have provided key data on which we can develop. We know that other diseases are associated with ME / CFS, with 50 to 80 per cent of patients who unexpectedly develop a flu-like disease. Certain factors, including physical and emotional trauma, genetic predispositions and environmental contaminants, such as toxins or moulds affecting my daughter may also play a significant role.
There are indications that infectious agents can enter the brain through the olfactory system and cause an inflammatory reaction that disrupts body functions. At the cellular level, scientists have identified an impaired capacity to generate energy from common “power” sources. For their part, my daughter always said that she was running out power because she had already done simple things like walking left her bedbound. She knew more than we did in her body: her cells literally lacked strength. In the process, she and I focused so much on the clear symptoms that we ignored the issue that might have identified us earlier.
Unfortunately, getting ME / CFS diagnosed is just half the fight. It is difficult to establish treatments to treat or cure the illness, without knowing why and how inflammation and symptoms linger so long or the role other causes and exposures play in the disease. As the National Institutes of Health have emphasized in the past, we will make innovative attempts to draw on what we already know and answer these questions directly.
Now is the best moment. The pandemic provides the potential to become more knowledgeable of the causes of this epidemic and to investigate the efficacy of therapies in other countries. Conventional medicine takes approaches to treat the whole person more and more. Yet, as the medical community is working to integrate patient experiences into treatment and research strategies, I expect the voices of ME / CFS patients to be stronger than ever.
This is not only a long-standing, well-coordinated effort to study this but also a summary of our medical care and research goals that may lead to the growth of thousands of COVID-19 survivors with the debilitating effects of ME / CFS. Today, more than ever, we recognize that the combination of genetic, environmental and social factors leads to health and disease. To order to understand the role of genes to diseases, priority should also be given to researching a changing climate that results in new infectious and chemical exposures.
We do need to move from studying how factors impact an organ system to how they affect our DNA and the underlying mechanisms that regulate the work of many bodies. So we must develop so standardize medical practices more interdisciplinary and inclusive, keeping patients like my daughter from cracking.
A new approach is important to offer tailored treatment to patients with complex multisystem disorders like ME / CFS. With this strategy, we will give hope and quality of life to millions of people who have been in silence for too long.