We know that COVID-19 leaves some with long-lasting symptoms. In fact, we are beginning to discover the connection between the respiratory virus and chronic fatigue syndrome (CFS). Now, CFS patients are hopeful that this link will lead to more research into the rare condition, according to an article published in The Guardian.

About Chronic Fatigue Syndrome

CFS, also referred to as myalgic encephalomyelitis (ME), is a chronic disorder that is characterized by severe, unexplainable fatigue. This exhaustion greatly impacts patients’ lives, as it makes it difficult to accomplish daily tasks and does not lessen with rest. Females are more commonly affected than males, and it is most often seen in those between the ages of 30 and 50. Medical professionals do not know what causes CFS, but they suspect a number of different triggers like viral infections, genetics, issues with the immune system, and hormone imbalances. Most recently, it has been linked to COVID-19. Regardless of the cause, possible symptoms of CFS include:

• Issues with concentration (brain fog)
• Intense fatigue
• Low stamina
• Dizziness
• Blurred vision
• Sleep problems
• Pain in muscles and/or joints
• Headaches
• Sore throat
• Swollen lymph nodes in the neck and/or armpits
• Depression
• Bowel dysfunction

These symptoms often worsen upon sitting up or standing, and they can restrict affected individuals from performing daily tasks, maintaining a steady job, and having a high quality of life. In addition, this condition is most likely underdiagnosed due to the lack of awareness. If it is diagnosed correctly, treatment is aimed at lessening symptoms. Treatment options include avoiding overexertion, establishing good sleep habits, pain management, physical and cognitive therapy, antidepressants, and diet changes.

Obstacles for CFS Patients

Many rare disease patients know that receiving the correct diagnosis can be difficult, and CFS patients are no exception. Because of the rarity of the condition and the lack of a diagnostic test, many physicians are unaware of CFS or do not know how to diagnose it. In addition, many patients report feeling dismissed by medical professionals, with some even being told their symptoms are all in their heads. Now, they are hoping that this might change.

It’s been impossible to ignore the pandemic; it’s completely altered our daily lives and restricted us to our homes. The news has played constant reports about the virus as well. Because of this, many people are now aware that some people who have been infected experience long-lasting symptoms. Their symptoms have been named ‘long Covid.’

These symptoms are remarkably similar to those of CFS, and right now, a lot of people are paying attention to them. This makes CFS patients hopeful that further research will be conducted into the rare condition, which could lead to a treatment, diagnostic test, or more knowledge.

In fact, resources are already being dedicated to research into long Covid. Congress approved $1.15 billion for the cause back in December. It’s important to note that this approval only came after CFS/ME advocacy groups joined forces with long Covid advocacy groups to fight for accelerated research into the prolonged symptoms of COVID-19. They referred to themselves as the Long Covid Alliance. Their goal is to advance knowledge on the long-lasting symptoms of COVID-19, as well as conditions linked to long Covid, such as CFS, mast cell activation syndrome, POTS, and others.

Looking Into Research

Medical professionals well-versed in infectious disease are not surprised that there are lingering symptoms of COVID-19. The professor of medicine at Harvard Medical School, Anthony Komaroff, stated in a press release that prior studies of infectious agents revealed that one of every ten infected individuals experienced a long-lasting fatigue syndrome. If these numbers hold steady for COVID-19, we could be looking at up to 20 million cases of long Covid. And that’s just in the next year.

While these numbers are scary, they also mean that many people will pay attention to long Covid and associated conditions like CFS. Already, researchers are looking into the phenomenon. The Body Politic Covid-19 surveyed 3,762 adult COVID-19 patients and published the results in December. Their data demonstrated that 2/3 of participants experienced symptoms for a minimum of six months. These include brain fog, fatigue, and shortness of breath that were worsened by stress or mental/physical activity. Most of these respondents did were not hospitalized for their symptoms.

In the time since this survey, more research has been conducted, and patients are hopeful that there will be more.

Looking Forward

Patients with long Covid have joined forces with CFS and other rare diseases patients to fight for increased research and funding. They have also been able to help each other, whether it is sharing experiences, recommending doctors, or providing tips. It’s also comforting to know that you are not alone and that others are on the same journey.

CFS patients are also hopeful that this increased attention will reduce the stigma. Currently, there are many obstacles that stand in the way of diagnosis and treatment for CFS, and a major one is the stigma surrounding it.

Doctors often dismiss patients and their symptoms, as they are unable to find a common cause. There is currently no biomarker or diagnostic test for this condition either, presenting another obstacle. Because of this, some physicians tell their patients that their symptoms are actually psychological. They recommend exercise and psychotherapy, which even coincided with CDC’s guidelines until 2017. Luckily, they dropped this recommendation, as did the UK’s National Institute for Health and Care Excellence.

Still, many feel that change is happening too slowly. They are calling for increased awareness, research, and funding.