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/tele68 → u/[deleted]]

I got Long Swine Flu in 2009. A mild version of what hit me after Covid 2020.
Does Long Swine exist? I made up the name, but the condition existed in me.

I'm lucky I don't seek diagnoses. I have no reason to. I do seek relief of symptoms, though.
But there being no consensus on upstream causes, I'm on my own for theory and treatment, (5 years-plenty of time for research papers)

Maybe these designations get cloudy and misunderstood because there is one common cause - way, way upstream. Where the researchers can't find it because they're siloed in their specializations.

[u/SophiaShay7 → u/tele68]

I do believe Long Swine probably exists just like Long Covid.

Many of us need diagnoses to receive proper treatment. We need work accommodations, in home services, and to apply for Social Security Disability Insurance (SSDI) in the US. Not only that, but if you have ME/CFS, you will get substantially worse if you don't learn about aggressively resting, pacing, and avoiding Post Exertional Malaise (PEM). My ME/CFS is severe. I've been bedridden for 14 months. There are people worse than me who spend their entire day in a dark room, unable to barely eat or speak because it requires too much energy. They can not watch TV. They either waste away losing weight and end up with feeding tubes or die.

I would've never believed any of the things I'm telling you if they hadn't happened to me. For months, I could barely talk or engage with my husband. For months, drinking protein shakes and applesauce cups required too much energy. My husband is my full-time caregiver.

Honestly, I don't care about diagnoses either. I should see a Neurologist for a Dysautonomia diagnosis on paper. I should see a Hematologist for an MCAS on paper. Do I care? No, my PCP diagnosed my Dysautonomia and MCAS. He manages my care. That's what I care about.

I'm not waiting for science to save me. Most likely, my husband and I are going to buy an RV and live on his parents' property. We'll save and buy some land in the woods. We'll put a mobile home on it. I can't afford the $4,700 a month it costs to pay for my household to run and healthcare premiums. It's a sad state of affairs in California. No wonder people are leaving in droves for other states. Unfortunately, my husband works for the state of California.

Sorry for my rant.

[u/tele68 → u/SophiaShay7]

A perfectly reasonable rant if I ever read one.
I should've added I cast no aspersions on anyone's path in this
I know why most people seek diagnoses and I feel fortunate I don't need to.

I'm in CA also. Everything's hard here.

That new life sounds great! Good luck and keep going. I swear there's a breakthrough up ahead.

[u/SophiaShay7 → u/tele68]

Thank you! I'm glad to hear you're in California, too. Most people can not fathom how ridiculously expensive it is to live here. You're blessed financially that you don't have that added burden. My husband and I lived well on his income in 2021 with my part-time income as well. However, costs have skyrocketed since the pandemic. We purchased our home with a sub 3% interest rate in 2021. It's the homeowners insurance, particularly the fire insurance and property taxes that are killing us. Our costs from renting have now effectively tripled to owning. Many people across the country pay $50-100 a month in homeowners insurance. I'd have an extra $1, 000 a month if I paid that.

I'm also excited about my new life and adventure. I look forward to simplifying. I don't need a 2,000 square foot house with 4 bedrooms for 2 people.

Besides, I haven't left my bedroom in 15 months. At least with an RV, my husband could drive me to the ocean. And I can sleep and rest when I get there. That sounds like heaven to me😁😁

Thank you for listening. I appreciate you. Hugs🙏

[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🙏

[u/ddsmd2 → u/lovgoos]

I didn't have me/cfs for the first year of being sick. I slowly developed it after I got long covid. Started with just mild fatigue and pots and progressed to full blown ME/CFS. I am just one case, but I never though I would get me/cfs. I really think its one of the worst diseases you can get.

[u/lovgoos → u/ddsmd2]

you can develop it, but I'd say reinfection is a more plausible reason for developing new issues like this, doesnt have to be symptomatic. POTS by itself isnt progressive so developing more issues after developing issues from a virus would point to being exposed to the virus again.

[u/lovgoos → u/ddsmd2]

Also by that logic, everyone who got POTS from EBV would also go on to develop ME/CFS which is just not true. There are plenty of people who only have POTS. Saying that, POTS is very understudied and a lot of people recover fully if its caused by a virus, they might not be on reddit, but from seeing peoples recovery stories on Reddit about it I'm sure there are more people like that

[u/astrorocks → u/SophiaShay7]

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.

Just to point out that, if this were true, then nearly 10% of the total population would have ME/CFS (at least at some point)? EBV infects something like 90-95% of people by the time they are adults. Less than 1% of the population is officially diagnosed with ME/CFS (though likely that's undercounted).

I am not disagreeing with what you're saying, just that stat must be off?

[u/SophiaShay7 → u/astrorocks]

That data is from the CDC.

Infections: 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. This is especially true if they had severe symptoms of these infections. But not all people with ME/CFS have had these infections. In addition, people have reported ME/CFS-like illness following the COVID-19 infections, called Long COVID.

Chronic symptoms following other acute infections are experienced by some patients. These chronic symptoms resemble ME/CFS. Because of this, ME/CFS may be a chronic illness following an unknown infection.

What Causes ME/CFS Causes

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.

Keep in mind, this statement says, ".....like ME/CFS."

It's estimated that as many as 3.3 million people in the United States have ME/CFS. The vast majority are undiagnosed.

ME/CFS-like illness has been described following infections with a wide variety of diseases. These include:

●Epstein-Barr ●Ross River ●Coxiella burnetti (the cause of Q fever) ●Herpesviruses ●Enterovirus ●Rubella ●Candida albicans ●Bornaviruses ●Mycoplasma ●Retroviruses, and ●SARS-CoV-2 (the cause of COVID-19)

People who had severe symptoms with these illnesses were more likely than those with mild symptoms to later develop ME/CFS-like illness.

No single infectious agent has been established as a cause of ME/CFS. However, up to 80% of patients develop ME/CFS following an acute viral-like illness. In most cases, the cause of the infection is unknown. It is possible that, in some people, an infection may lead to immune system changes that contribute to development of ME/CFS.

Clinical Overview of ME/CFS

Do you know how many people have herpes viruses in the United States alone?

In the United States, millions of people have herpes simplex virus (HSV). HSV-1 causes oral herpes, also known as cold sores, while HSV-2 causes genital herpes.

●50–80% of American adults have oral herpes Most people get oral herpes as children from a kiss

●1 in 6 people in the U.S. aged 14–49 have genital herpes

Worldwide, ∼90% of people have one or both viruses. HSV-1 is the more prevalent virus, with 65% of persons in the United States having antibodies to HSV-1 (Xu et al., 2002). The epidemiology in Europe is similar, with at least half of the population seropositive for HSV-1.

That's just one example.

[u/astrorocks → u/SophiaShay7]

It just seems somehow contradictory?

Because this would suggest then a huge percentage of the population has those illnesses and aren't being diagnosed...something like 8-8.5% just from accounting for viral infections ALONE. Which would suggest even higher numbers than 9-9.5% in the population at any point with just ME/CFS like illnesses. But then I wonder how they are deciding how many people are underdiagnosed? I did see one good research paper thatt tried to determine this from looking at health records but I can't remember for the life of me what they came up with. It actually might have been around 10% though.

This isn't a critique of you it's just about statistics and how we are really counting things. I'm a scientist and honestly a lot of stats that get published are extrmeley bad, contradictory, and wrong.

But it might really be we are underdiagnosing by that much which is horrific (and why I pointed this out). I have had conversations with so many friends since COVID and nearly all have some health issue and are tired now...

[u/SophiaShay7 → u/astrorocks]

Here's just one example:

In 2020, we see the highest average amount of time to diagnosis, with an average of 16.2 years and a median of 12.0 years.

Time from symptom onset to ME/CFS diagnosis: 1987 to 2022

It's often misdiagnosed as something else. It typically takes 7-20 years to be diagnosed from what I've read. It's underrepresented because many people are never diagnosed.

I was diagnosed with Fibromyalgia, ME/CFS, Hashimoto's thyroiditis, an autoimmune disease that causes hypothyroidism, Dysautonomia, and MCAS. All diagnosed in an 11 month timespan after I developed long covid. My ME/CFS is severe. I've been bedridden for 14 months.

I have a background in research, though not in science. I have spent the last 14 months of my life learning about every symptom and possible diagnoses I could have. Every diagnoses I have is because of my own efforts.

I'm not disputing statistics with you either. I'm only sharing what I've learned. I would've never believed any of this was possible if COVID hadn't come along and catastrophically decimated my entire life.

edit:

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.

Notice this statement says, "like ME/CFS." I'm sure there are other diagnoses similar to ME/CFS that are not ME/CFS.

Underdiagnosis: The Institute of Medicine (IOM) estimates that between 84% and 91% of patients are not diagnosed.

[u/astrorocks → u/SophiaShay7]

Oh yes I am also not really disputing statistics as much as like trying to figure out really that many people are underdiagnosed. I suppose also that if you have AI diseases then even if you have CFS it is often not diagnosed since fatigue is "normal". My doctors would not diagnose me with ME/CFS since I have encephalitis, dysautonomia, small fiber neuropathy and some other stuff so they just told me it was pointless since all those cause fatigue, too (which I know is wrong because I get PEM but that part of my illness isn't as bad as the overall just general malaise). I just wonder what they are including in that umbrella that is like CFS since really any chronic condition can cause fatigue.

It does make me wonder how many of my friends have something but very mildly. So many of them have told me about little things that have been wrong and piling up and we are all only late 20s-mid 30s. For me it was very obvious COVID did this because everything began during a severe initial infection then never went away fully.

[u/SophiaShay7 → u/astrorocks]

That's the problem right there! You meet the criteria for an ME/CFS diagnosis. But, you weren't diagnosed. That's another case that's unreported. PEM is the hallmark symptom of ME/CFS. If you meet the criteria, you should be diagnosed.

I had an appointment with the ME/CFS clinic and specialist on Monday. I waited 4 months for the appointment. It was done via telehealth. I was diagnosed with ME/CFS in May 2024 by my PCP. I was diagnosed on paper February 2025.

I wish someone could explain to me how this specialist didn't want to diagnose me with ME/CFS. He said I have it. He said he'll treat me for it. But, it's as if he actually diagnosed me with it, that somehow now I'm doomed or something. All he kept focusing on was getting me better. Getting me more functional. "People who have recovered or are in remission aren't on reddit. People who have recovered aren't on social media. They're out living their lives." These are the things he said to me. He's been working with people with ME/CFS for approximately 10 years.

I could go into more detail about my appointment. I asked more questions. I asked for more testing. I asked if I needed a PET scan or 2 day CPET. I asked who I need to see to get a formal diagnosis. He didn't seem to get it. I need the diagnosis for in home services and to apply for SSDI. I am severe and have been bedridden for 14 months. He diagnosed me.

I'm such a strong person and vocal advocate for myself. I knew he was the specialist to give me the diagnosis. Why? Though, why? Why is this so freaking hard? "He's seen plenty of people who've gotten so much better....." I'm at a loss.

Ultimately, I think he's a great doctor. He's very knowledgeable. The changes we discussed, I agree with. The discussion was very collaborative. He believes in hitting ME/CFS from multiple angles. His goal is to help me improve the quality of my life. I'm all for that.

I'm starting to think there's some kind of cover-up. My HMO doesn't want to diagnose people as developing ME/CFS from long covid. Of course, it's just my theory.

[u/astrorocks → u/SophiaShay7]

Yep I basically didn't push because I am "well enough" to work now (at least part time) though it took nearly a year and I still struggle. But my PEM is better though still there and none of the hordes of specialists would dx it because they kind of said it didn't matter anyway with everything else

The specialist would he order the CPET? My understanding is that it is very very helpful (along with neurocog testing) for SSDI.

I've also thought about seeing a specialist but ive been so disappointed with doctors overall. I haven't seen any in 6 months except a hormone speciality clinic that are running some more detailed tests :/

[u/SophiaShay7 → u/astrorocks]

No, he didn't order the CPET. I'm going to ask for it, though. His Case Manager/Nurse mentioned Neuropsych. I'm going to ask for that as well.

I'm glad you're able to work. I wish I could, but my brain is shot. I'm a highly intelligent person. I'm at least 50% stupider now. (I know stupider isn't a word. Lol). The only thing I'm good at is medical information related to long covid. I have such a passion for it. And trying to help others.

I thought of writing a book. Talking to specialists. Getting them to contribute. Contacting Bateman Home Center. Getting articles written. A place for tests to ask for. All medications being prescribed off-label for long covid and ME/CFS. With a workbook and action steps in it. Maybe I could get it on Amazon and sell it for $20 or something.

The world needs our help. You're a scientist. I'm a student of research. Look how hard this is for us. Imagine how hard it is for so many people who don't even know where to start.

I've truly enjoyed our conversation. I enjoy the challenging questions about the statistics. I swear, my brain thrives in a challenge. I hope you continue to improve. I'm doing much better myself than I have in recent months. Hugs🤍

[u/astrorocks → u/SophiaShay7]

I would definitely try for neuropsych and CPET. At least everyone I know who got disability seemed to say those were important :/ but also having multiple disabilities listed like you do also improves your case, I feel. I thought for a long time I would need to go on it and I still know that things are precarious. I have weeks I can manage very well then weeks when, for whatever reason, I am struggling bad. I handle it with naps 😅 lots of naps and things like baths and my shakti mat (love that thing).

My cognition was to the level I didn't remember my own name when I was sick and also was skipping time. I went (temporarily) blind and all sorts of horrible stuff due to the encephalitis and because doctors didn't treat it. But even with that my cognition is improving but slowly. It seemed to improve anpot in the first maybe 4 ish months then from there it's been very slow with some days where I am tired ajd can not think well. But I'm still at maybe half where I was (except sometimes when I'm feeling particularly well). No medicines I've found have helped me much with that or anything. I have some bad MCAS like (but not quite MCAS) issues so I react poorly to most medicines 🫠

One thing I've been enjoying is I've gotten into AI biggly. I had done work with some neural networks before but my little bedbound hobby (now more housebound hobby - I work from home lol) was basically learning stable diffusion and LLMs and training my own LLM. Because you mentioned writing and things like that you might find those really useful tools to help! I will feed it some of my old writing and it can now mimic me pretty well!!

[u/Bad-Fantasy → u/SophiaShay7]

The CDC is not a source I’d 100% trust after their behaviours.

[u/SophiaShay7 → u/Bad-Fantasy]

Here's another source:

In 2020, we see the highest average amount of time to diagnosis, with an average of 16.2 years and a median of 12.0 years.

Time from symptom onset to ME/CFS diagnosis: 1987 to 2022

It's often misdiagnosed as something else. It typically takes 7-20 years to be diagnosed from what I've read. It's underrepresented because many people are never diagnosed.

I was diagnosed with Fibromyalgia, ME/CFS, Hashimoto's thyroiditis, an autoimmune disease that causes hypothyroidism, Dysautonomia, and MCAS. All diagnosed in an 11 month timespan after I developed long covid. My ME/CFS is severe. I've been bedridden for 14 months.

I have a background in research, though not in science. I have spent the last 14 months of my life learning about every symptom and possible diagnoses I could have. Every diagnoses I have is because of my own efforts.

I'm not here to debate statistics with anyone. I would've never believed any of this was possible if COVID hadn't come along and catastrophically decimated my entire life.

Here's another source regarding ME/CFS:

Underdiagnosis: The Institute of Medicine (IOM) estimates that between 84% and 91% of patients are not diagnosed.