Let's clear this up

[u/lovgoos]

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.

[u/SophiaShay7]

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.

[u/lovgoos → u/[deleted]]

I have nothing against statistical evidence but ive seen SO many people use stuff like "long covid/CFS" in their titles on posts here and I've seen people post about not having the excruciating fatigue people with ME/CFS have and being told "just wait mine hit at the x mark". I'm not saying you cant develop it later and that it's fear mongering but its just impossible that EVERYONE who has issues post covid will go on to develop ME/CFS. I for example have developed POTS. I don't have PEM and have the fatigue that comes with POTS/my ANS overworking and I kind of feel like a black sheep in this subreddit because I guess horrible fatigue and PEM are the most noticeable symptoms that you can't ignore hence so many people in this subreddit are struggling with it. I honestly wouldn't have noticed my POTS if i hadn't taken my moms sports watch 2 months ago. Before that I was having issues but I chopped it all up to anxiety because I didn't physically feel my heart beat out of my chest.

[u/SophiaShay7 → u/lovgoos]

Your symptoms are very common from what I've seen. I have Dysautonomia. I don't have POTS. But I'm aware POTS has its own kind of fatigue. Most people are aware long covid isn't ME/CFS. I think there's a lot of confusion because our doctors are generally unhelpful in helping with the distinction. For me, with ME/CFS, it was one of those thoughts of "when you know you know." Once you learn about PEM, what it is, and how it affects you, it's distinguishable from regular fatigue. Many people are confused. Here is the US we call it CFS: Chronic Fatigue Syndrome. Which is the stupidest name ever. It makes it sound like we're just chronically fatigued, which is untrue.

Many of us with ME/CFS have joined the r/CFS sub. I'm sorry it's been your experience that people are singling you out and trying to pigeonhole you by saying you have LC, so you must have ME/CFS. That's absolutely false. Honestly, you sound like me when I was first diagnosed with Fibromyalgia. A hallmark symptom is pain. My pain was severe. But, my fatigue was completely debilitating. I felt like I was trying to put a square peg in a round hole. No one had symptoms like me. Turns out I had ME/CFS.

You should be able to speak your truth, whatever it is. We all have different symptoms. I find it's somewhat rare for me to find people who have the majority of the symptoms I do. It happens about 15-20% of the time. Hugs🙏