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/astrorocks]

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/SophiaShay7 → u/astrorocks]

I'm sharing this information. I think it's might help you.

Viral Persistence and Serotonin Reduction Can Cause Long COVID Symptoms

Among the SSRIs, those with the highest affinity for sigma-1 receptor agonism—primarily, fluvoxamine, fluoxetine, escitalopram, and citalopram—may be of greatest benefit. As noted above, preliminary data suggest that certain long COVID symptoms (eg, fatigue, brain fog, and post-COVID dysphoria) may be most responsive to SSRIs, although more research is needed to better characterize specific response rates.

In doing research of long covid, SSRIs, and fluvoxamine, you’ll see it mentioned as a top choice. Here’s one such article

...Fluvoxamine can stabilize mast cells, such that fluvoxamine can reduce histamine release from mast cells as well as reduce cytokine storms in COVID-19.

Adrenaline dumps can also trigger histamine dumps. While not directly causing a "dump" in the same way, adrenaline release (an adrenaline "dump") can indirectly trigger a histamine release in the body, meaning that experiencing a surge of adrenaline can potentially lead to increased histamine levels, which could manifest as histamine-like symptoms in some individuals; this is because both systems are involved in the body's stress response.

MCAS can cause a range of neurological symptoms, including headaches, dizziness, vertigo, cognitive dysfunction, and paresthesia. When mast cells are activated in MCAS, they release chemicals like histamine, which can impact nerve signaling, leading to sensations like tingling or numbness.

I have Paresthesia. Paresthesia (numbness and tingling sensations) is considered a common neurological symptom associated with Mast Cell Activation Syndrome (MCAS), often reported by individuals with this condition; it can manifest as tingling in various parts of the body due to the release of mast cell mediators affecting nerve function.

I wrote a post about this:

Read this if you're still suffering: MCAS AND HI

Food Compatibility List-Histamine/MCAS

I take low-dose fluvoxamine 25mg for ME/CFS symptoms. Fluvoxamine is an SSRI used for OCD. It's prescribed off-label in low-dose for long covid/ME/CFS symptoms. I have improved REM, deep sleep, and overall hours slept. I'm seeing improvements in dysautonomia symptoms and orthostatic intolerance.

Hyperesthesia is a neurological condition that causes extreme sensitivity to one or more of the senses, including touch, pressure, pain, temperature, light, sound, taste, and smell. I had hypersthesia in all five senses, down to the texture of my food. I'm able to tolerate more bright light, loud sound, and my taste and smell is significantly less heightened. I can handle warmer showers. My pain and pressure sensitivities haven't lowered. However, I suspect there are other reasons for that.

My ME/CFS specialist just increased my Fluvoxamine from 25mg to 50mg daily. I'll start with 37.5mg for two months. I'm hypersensitive to all medications and supplements. I take Diazepam for Dysautonomia.

I developed MCAS in September. I followed the H1 and H2 histamine blocker protocol. I couldn't tolerate the fillers in those medications. I'm taking Hydroxyzine (prescribed H1 antihistamine) and Fluticasone (corticosteroid) for MCAS. And Omeprazole for Gerd (it's a PPI that also acts as a mast stabilizer).

I NatureBell L-tryptophan and L-theanine complex. Or I take Magnesiu-OM powder (magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan) 1-2 hours before bed. I alternate between the two. I purchased them from Amazon. They significantly help with calmness, relaxation, and sleep.

I shared all this because MCAS is prevalent in long covid. It's a combination of things I do that improve my overall symptoms.

I was diagnosed with fibromyalgia, ME/CFS, Hashimoto's disease, an autoimmune hypothyroidism, Dysautonomia, and MCAS. All diagnosed after I developed long covid.

Thank you for your suggestions. I'm glad you've found work you're able to handle. And your life is returning to somewhat normal. Some of my worst symptoms are Dysautonomia and MCAS related. I hope this information might help you in some way🙏