Growing attention to Long COVID is sparking renewed interest in Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalitis (ME). Our COVID Experts Weigh in.
People suffering from Long COVID and Chronic Fatigue Syndrome (CFS) have faced an uphill battle – and not just against their symptoms.
For years, the medical community has been at odds over CFS, leaving patients feeling sidelined. Now, with the emergence of Long COVID, a renewed spotlight has been cast on these ‘mysterious’ conditions, highlighting their similarities and the challenges of their diagnosis.
Featuring insights from our in-house COVID experts, this post aims to shed light on the striking parallels between these two chronic diseases, emphasizing their shared symptoms and the evolving understanding in the medical community.
Here’s what we’ll cover:
- What is Long COVID?
- What is Chronic Fatigue Syndrome (CFS)?
- Are Symptoms of Long COVID and CFS The Same?
- Why are Long COVID and CFS Difficult to Diagnose?
- What Research is Being Done to Help People with ME/CFS and Long COVID?
1. What is Long COVID?
Long COVID, sometimes called Long Haul COVID Syndrome (LHCS) or Post-Acute COVID Syndrome, is a prolonged illness that occurs after a COVID-19 infection. It is estimated to affect at least 65 million people around the world.
The symptoms of Long COVID are not limited to the respiratory system. Rather, Long COVID patients are impacted across multiple systems. Long COVID symptoms emerge during the post-infectious period and persist for months and sometimes years.
As we outline in our Long COVID treatment guide, there are several groups of symptoms connected to the syndrome, including:
- Respiratory
- Neurological
- Musculoskeletal
- Autonomic
- Gastrointestinal
- Dermatologic
Patients with Long COVID should be overseen by clinicians familiar with treating this challenging condition. The therapeutic strategy should be tailored based on the grouping of clinical indicators and manifestations.
Since Long COVID is a relatively novel syndrome, patients may have difficulty finding the experienced clinicians they need. For a list of health professionals with Long COVID experience in your area or who offer telehealth, check out our Provider Directory.
☝️ Click above to learn more about FLCCC's approach to Long COVID treatment.
2. What is Chronic Fatigue Syndrome (CFS)?
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a complex and long-term disorder characterized by profound fatigue that isn’t alleviated by rest.
It’s estimated to impact millions globally, though exact numbers vary due to differing diagnostic criteria. Some studies claim up to 91% of people in the United States with myalgic encephalomyelitis remain undiagnosed.
The symptoms of CFS/ME extend beyond just extreme tiredness. Those affected often experience a range of debilitating symptoms that span various bodily systems.
As with Long COVID, CFS/ME encompasses several clusters of symptoms, which include:
- Cognitive
- Musculoskeletal
- Neurological
- Autonomic
- Gastrointestinal
As you can see, there are a lot of symptom overlaps between these two illnesses!
Chronic Fatigue Syndrome is often thought to arise from viral infections, notably Epstein-Barr Virus (EBV) and Human Herpesvirus 6 (HHV-6). Given the similarities between CFS and Long COVID, it isn’t a stretch to consider SARS-CoV-2 as a potential trigger for the syndrome.
3. Are Symptoms of Long COVID and CFS The Same?
Is Long COVID “The Same” as Chronic Fatigue Syndrome? After spending over 1.5 years treating patients with Long COVID and vaccine-related injuries, FLCCC co-founder Dr. Pierre Kory says yes.
Here’s how he put it as a guest on the Ask Dr. Drew show:
“The constellation of symptoms that we see with Long COVID is essentially the same as myalgic encephalomyelitis chronic fatigue syndrome.”
Dr. Kory says his patients come to him detailing the same three core symptoms:
- Fatigue: Persistent fatigue that is new, debilitating exertional intolerance, no energy to do anything, feeling best when they are lying down or in bed.
- Post Exertional Malaise: When patients try to exert themselves, their fatigue ramps up, and the other symptoms that they suffer from will flare up.
- Brain Fog: some cognitive deficit, ranging from word-finding difficulty, short-term memory problems, forgetting tasks, trouble with concentration and focus, and in rare cases delusion and disorientation.
The overlaps become even more apparent with a deep dive into individual symptoms, hinting at potentially shared root causes or pathways.
4. Why are Long COVID and CFS Difficult to Diagnose?
Although understanding has improved since COVID-19 began in 2020, many Long COVID patients report challenges in getting a formal diagnosis. The same goes for CFS. Here’s why:
- Variability of Symptoms: Long COVID and CFS manifest in a wide array of symptoms, affecting multiple body systems, which can make it hard to pinpoint as a single syndrome.
- Lack of Diagnostic Criteria: The diagnostic criteria for Long COVID and CFS continue to evolve, making it harder for doctors to confidently diagnose it.
- Overlap with Other Conditions: Is it Long COVID or CFS caused by another prior viral infection… or both? Or vaccine injury? All of the above share similar symptoms.
- Skepticism: Patients have faced skepticism from healthcare providers, who dismiss their persistent symptoms as psychological or unrelated to their initial COVID-19 infection.
- Lack of Knowledge: Since Long COVID is still a relatively new phenomenon, not all medical professionals might be fully aware of its existence or the range of potential symptoms.
Chronic Fatigue Syndrome and Long COVID are Multisystem Illnesses
Viruses often have effects beyond their initial symptoms, making their full impact on the body elusive. Take COVID-19, for instance. While it’s primarily categorized as a respiratory illness, focusing solely on the lungs could overlook the broader implications, such as the transition from acute COVID-19 infection to Long COVID.
Speaking on an episode of FLCCC’s Weekly Update in June 2023, FLCCC’s Chief Scientific Officer, Dr. Paul Marik, speculates why:
“What’s interesting and what many doctors don’t get is that patients [with Long COVID] have multiple symptoms that cross over multiple systems. So that they are not presenting with typical syndromic problems. So doctors are not putting it together.”
When you frame it like that, it’s no wonder Long COVID and ME/CFS are so elusive. Both illnesses require a holistic, multidisciplinary approach to properly detect and diagnose.
To fully grasp the diagnostic challenges, consider this real-world scenario: a patient with chest pain and fatigue, common Long COVID symptoms, becomes concerned and heads to the clinic. The patient is otherwise healthy, so the doctors order blood tests, a chest X-ray, and an electrocardiogram.
Their goal is to rule out any major issues with the heart, which indeed they should do. The trouble starts if/when all those tests turn out to be negative. At that point, unless doctors are looking for Long COVID or looking for CFS, that might be where the patients’ journey ends.
But of course, that’s not where the suffering will end.
5. What Research is Being Done to Help People with ME/CFS and Long COVID?
It’s fair to say that the interest in solving the Long COVID puzzle will inspire us with new ways of approaching CFS. So what kind of research is going on right now?
In recent years, thousands of papers related to Long COVID and its treatment have been published, ranging from clinical trials to observational studies. While it’s possible to start your own deep dive into the data, we just so happen to have an in-house expert who is already doing that!
FLCCC’s Dr. Mobeen Syed is a doctor, medical educator, and host of Long Story Short – a show entirely devoted to discussing the latest in Long COVID research.
Here’s an episode that will be relevant to today’s topic: Long Story Short 8: Long COVID and Chronic Fatigue Syndrome.
In the above episode, Dr. Been evaluates a research paper titled “COVID-19 and Chronic Fatigue Syndrome: An Endocrine Perspective“. It’s a great example of how looking at entire organ systems can help doctors understand these illnesses better.
In addition to Dr. Been, other FLCCC associates are making strides by doing research of their own. Prominent Holistic Medicine Expert and FLCCC Clinical Advisor, Dr. JP Saleeby, is spearheading research that reveals promising treatment outcomes for both Long COVID and CFS using peptides.
Wrapping up
Dealing with Long COVID and Chronic Fatigue Syndrome (CFS) isn’t easy – for patients or doctors. But as we’ve explored, there’s a lot in common between the two. Both have a wide range of symptoms and can be tricky to pin down. With more attention now on Long COVID, there’s hope that both conditions will get the focus they need.
We’re seeing more research, better discussions, and a growing awareness in the medical world. It’s a step in the right direction, and for anyone facing these conditions, that’s good news. Let’s keep pushing for clearer answers and better care!
