Long covid and the most misdiagnosed illness that has a debilitating impact on day-to-day activities
Imagine having exhaustion that you can barely get up, headaches, dizziness, muscle aches, and mental fogginess, in addition, no one can understand why you feel this way and how you can help yourself to elevate this, what medication should be prescribed that would help and reduce the unbearable symptoms. Those who have the severe form of this illness become bed-bound or house-bound, being unable to perform mundane tasks, career goals, hobbies or family become just impossible to achieve.
This is the reality for many patients, at least in the beginning.
We are talking about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Many visit one physician after another without getting a real diagnosis and being misdiagnosed with emphysema, mental health conditions, diabetes, thyroid problems, autoimmune diseases, fibromyalgia and many more. But how can you cure a disease by treating the other? Although more and more health specialists become aware of this illness and its detrimental impact on patients, the information and research are scarce.
Even though many who suffer from this illness can still function in society and have a job, family, and hobbies, many adjustments and support are needed because it is still a debilitating illness that affects all aspects of life. Those that start to feel their symptoms at young age try to disguise it, maintaining straight A’s, having a social life, generally pushing far past their limits and then crashing for several days. No one can guess what happens when no energy is left if you portray yourself a certain way in your social life. However, the struggle comes when you start living with someone. How can you hide the fact that for some days you need to sleep 16 hours, and lay in bed because of the chronic pain and exhaustion?
Although ME/CFS can be a challenge, however, communication and understanding can bring you closer. What helps you grow together if it is not the struggle and challenges in your life? What people need is to feel understood, know that they do not need to hide it and not be afraid to ask for a break, or decline plans. Also, the universities and employers should be aware and make some adjustments. But the most important is our health system, specialists should provide healthcare that would help reduce the symptoms, not cause desperation and hopelessness. The worst that you can do is say that you are faking it. The stigma needs to be stopped, these people are not lazy or tired or unmotivated — they are sick. Patients deserve to be treated with respect and equality.
How it is related to Long Covid?
Patients whose COVID symptoms persist for four weeks or more suffer from Long COVID or post-COVID syndrome that could have similar symptoms as Chronic fatigue syndrome. Many organisations have started exploring these two illnesses and the connection between them. Based on the Patient-Led Research Collaborative research, it is estimated that about 75% of Long Covid patients demonstrate signs of ME/CFS. Another study showed that the prevalence of ME/CFS was 16,8% in long COVID patients after a face-to-face consultation, which included detailed history taking, physical examination and laboratory examination. Likewise, exclusion of diseases such as diabetes, hypothyroidism and rheumatological disease. In addition, the most frequent symptoms were general fatigue, headache, insomnia, dysosmia and dysgeusia.
Now the real question is how can you one day be healthy and another suffer from these debilitating symptoms?
ME/CFS is a complex long-term illness often triggered by an acute viral infection, for example, the Epstein-Barr virus or after contracting influenza. Research has found that while most people’s organisms have a temporary immune response, people with ME/CFS create a continuous response. It is also said, that ME/CFS generate a chronic inflammatory immune response in the peripheral system. Since this illness includes neurological symptoms like brain fog and sleep dysfunction, this means that the brain is also affected. Scientists speculate that there’s inflammation in the brain, so-called neuro-inflammation, and the brain has its own immune system contributing to the inability to function properly and inducing the brain to send SOS signals to the body, as a result, encouraging elevated immune system response and inflammation.
To this day, people that suffer from this try to raise awareness and share their stories. Furthermore, COVID and especially long COVID encouraged physicians and scientists to start taking ME/CFS more seriously, research, understand what is causing these symptoms and find the medication that could elevate them. It is only the initial steps in this field but let’s not forget that small continuous steps could lead us far.
