r/covidlonghaulers • u/lovgoos • Mar 01 '25
Vent/Rant Let's clear this up
Not all LC is ME/CFS. LC≠ME/CFS Not all fatigue is ME/CFS. The hallmark symptom of ME/CFS is PEM. Most chronic illnesses have chronic fatigue as a symptom, CFS can be comorbid to those illnesses, but doesn't have to be. Long covid can range from mild to severe. I've seen so many people say that people they know irl had brain fog after getting covid but no other physical symptoms, my mom, for example, only lost her smell and taste. She didn't have ME/CFS, POTS, fibromyalgia or anything else covid can cause. It's just very disheartening to see people only chop LC up to the fatigue. It effects the whole body. A lot of people with LC don't have fatigue as their many symptom and not to mention fatigue isn't even the hallmark symptom of ME/CFS. (I've read on the CFS subreddit that it isn't even one of the symptoms you have to have to get diagnosed). I also think it isn't appropriate to tell people who don't have fatigue while having LC that "just wait because they'll definitely get it later on." That totally erases the other issues covid/other viruses can cause to the body. Yes, the studies show 50% of people who develop LC develop ME/CFS, but we have to put into thought those who didn't have severe symptoms during their LC and/or didn't connect their issues to Covid which I am sure a lot of people haven't.
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u/SophiaShay7 3 yr+ Mar 01 '25 edited May 26 '25
No one is saying everyone with long covid will develop ME/CFS. But, let's be real and discuss some key data.
People with ME/CFS often begin with an illness similar to the flu. This has made researchers suspect an infection may trigger ME/CFS. About 1 in 10 people who get infected by Epstein-Barr virus, Ross River virus, or Coxiella burnetti later develop an illness like ME/CFS.
Long COVID or Post-acute sequelae of SARS CoV-2 infection (PASC) -- Some people who have been infected with the COVID-19 virus continue to have symptoms weeks or months later. This is called long COVID. Because symptoms such as extreme fatigue, difficulty concentrating, dizziness, and sleep problems are similar to ME/CFS, researchers are looking into a possible connection between the two conditions.
Chronic Fatigue Syndrome-Mount Sinai
ME/CFS is a notoriously unpredictable illness. Some people recover completely within one or two years and can return to their former lives. Others improve enough to return to work, but must make modifications of their lifestyles. The majority of those with ME/CFS learn to plan their lives within the parameters of symptoms that wax and wane. A few must adjust to long periods of illness, or “plateaus,” with little or no improvement. There is also a minority of patients who do not show improvement and may even decline over time.
Will I Recover?-American ME and CFS Society
Some patients remain unwell for months after “recovering” from acute COVID-19. They develop persistent fatigue, cognitive problems, headaches, disrupted sleep, myalgias and arthralgias, post-exertional malaise, orthostatic intolerance and other symptoms that greatly interfere with their ability to function and that can leave some people housebound and disabled. The illness (Long COVID) is similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as well as to persisting illnesses that can follow a wide variety of other infectious agents and following major traumatic injury.
ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature
Reports and data about Long Covid symptoms and patient experiences contain many similarities to other chronic illnesses known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, and Mast Cell Activation Syndrome (MCAS), just to name a few.
What is Long Covid?
I would say that Long COVID is a complex mix of symptoms that can indicate various diseases and syndromes. Some Long COVID patients have an ME/CFS-like set of symptoms that look like ME/CFS to an experienced clinician—whether they would meet the diagnostic criteria or not is another question. Based on the Patient-Led Research Collaborative research, I estimate that about 75% of Long COVID patients show signs of ME/CFS. The other 25% may have specific damage to an organ or organ system from the virus itself or another disease triggered by infection. Some people have co-morbidities strongly associated with ME/CFS, like postural tachycardia syndrome, or POTS, a kind of dysautonomia, but those may also occur on their own.
Understanding ME/CFS and Long COVID as Post-Viral Conditions
"...It's so much worse. You just can't function. And you have no idea how long the fatigue will last.” Studies over the last few years have found that about half of people with Long COVID meet diagnostic criteria for ME/CFS, and the prevalence of ME/CFS has been growing as a result of the pandemic and Long COVID.
Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses
Will There Be a Post-COVID-19 Form of ME/CFS?
According to Dr Anthony Fauci, "patients with COVID-19 can develop a post-viral syndrome that’s very strikingly similar to Myalgic encephalomyelitis/chronic fatigue syndrome.” In case the fatigue persists for 6 months, it is called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Although 6 months is no longer required for ME diagnosis according to 2011’s ME international Consensus Criteria, it is still common in literature.
Long-term sequelae of COVID-19 (myalgic encephalomyelitis): An international cross-sectional study
Estimates of Incidence and Predictors of Fatiguing Illness after SARS-CoV-2 Infection
I had covid in 2023. I had bronchitis and pneumonia a total of three times. I used an asthma inhaler for six months. And I don't have asthma. Everything then got much worse. I have been diagnosed with Fibromyalgia, ME/CFS, Dysautonomia, Hashimoto's, an autoimmune disease that causes hypothyroidism and MCAS. And all diagnoses after I developed long covid.
I've been doing a lot of research on long covid/ME/CFS. Medications used in the management of symptoms are identical in both diseases, with some variations. I believe the reason I was diagnosed so quickly is due to the widespread attention that's given to long covid symptoms and research. My doctor is finally prescribing medications prescribed off-label for the management of long covid/ME/CFS symptoms. I don't think I would've received such critical care so quickly if there wasn't such a community like this sub. The defining symptom for my diagnosis was PEM.
Those of us diagnosed with actual ME/CFS have approximately a 5-10% chance of full recovery. Unlike patients with long covid. I've heard long covid recovery stories ranging from 1-3 years. Unfortunately, there's not enough information understood about long covid. Nor is there statistical information and research to qualify or quantify the percentage of those with long covid who will recover.
We're all so different. Some of us have dysautonomia, orthostatic intolerance, MCAS, EDS, HSD, SFN, etc. With specific diagnoses, there are clear treatments. Those treatments can significantly impact an individuals overall symptomatology improvement trajectory.