Posts by silentbear16

Brenda Stewart59 said:In the US, they offer bits and pieces of these genetic screenings, but the most depressing part is the lack of professionals willing to actually connect the dots into one cohesive picture.
Everyone stays strictly within their own silo, refusing to look outside their specific specialization, even though these issues overlap quite extensively.

Here in America, you have specialized genetic labs that focus solely on genomics. You can order a saliva test kit online, spit in a tube, mail it off, and get your results via email.
Once you have those results, you can run them through various sites or apps to get insights and potential diagnostic directions for different conditions.

There are even services that ship kits directly to you in the US, and you just send them back via FedEx or a similar courier service.
https://www.23andme.com/
these ones process the data https://livewello.com/

I plan on doing this eventually, but not right now. Everything I've read from other people living with ME so far is still too vague—nobody seems sure about anything, blah blah blah. Plus, the tests are pretty pricey.

I think they still haven't figured out how to properly interpret the data or what the next steps should be once they actually do...

Brenda Stewart59 said:I'm bringing this topic back up for a moment...

Between the mountain of symptoms I'm dealing with and the endless cycle of researching them—trying to narrow things down by tweaking my diet and eliminating triggers—I stumbled upon Myalgic encephalomyelitis today. This thread feels like it might be relevant, too. I don't have an official diagnosis yet, but I check almost every box on the list.

Since my deep dive started down a completely different rabbit hole, I figured I’d turn to you all and ask: have any of you found a link between your own health struggles and MTHFR issues?

I skimmed an article (can't handle long texts in this state). I have been diagnosed with ME. Regarding those supplements like acetyl-l-carnitine or NAD, I've tried them all... nothing helped. I haven't done genetic testing, and I'm not even sure if that's easy to get here in the States.

Latest research findings from the conference at Stanford, USA:

Stanford Presents – Advances in Clinical Care and Translational Research

Stanford Symposium for Chronic Fatigue syndrome / Myalgic encephalomyelitis

(In English. I can try to translate if anyone needs me to...)

Nicole Taylor5 said:In short... if you didn't shake this crap off in the first couple of years, you probably aren't going to. The fallout ranges from "annoying" to "completely life-altering." And let's be real—maybe 5% of people actually see a full recovery. Let's not sugarcoat it... this thing is brutal 😉

Finally, someone actually said it like it is. 👍

I’ve tried everything when it comes to diet. I’ve always eaten healthy and maintained a steady weight, but ever since getting sick, I’ve gone through the ringer—testing for celiac disease, various food intolerances, and cycling through endless diets. It was just a massive waste of money...

A good diet helps manage almost any condition, but expecting it to make a massive dent in Myalgic encephalomyelitis is like expecting a change in diet to cure cancer or AIDS.

Carl Castillo69 said:So I’ve got a question—I hit this massive flare back in May 2012 and I haven't stopped feeling exhausted since. It’s constant. I wake up wiped out, and if I walk even like a mile, that’s basically my limit for the entire day. Just today, I went for a quick stroll in the sun for maybe half a mile and I felt absolutely trashed—totally pale, couldn't even stay on my feet, and ended up puking.
Also, I have zero appetite, especially in the mornings. I can manage a little something in the afternoon, but I just cannot put on any weight, no matter what.
The thing is, every single test comes back perfect. I’ve done the blood work, checked my thyroid via biopsy, glucose, blood pressure—everything looks totally normal.
My endocrinologist says it isn't my thyroid, and my primary care doctor is basically clueless about what's going on; she even suggested it might not be chronic fatigue.
So, are you guys dealing with these same exact symptoms?

To give some context, about four months ago I could actually walk 1.2 miles for a decent stretch before hitting a wall, and I had a decent appetite back then—I wasn't waking up feeling this dead. Nowadays, I wake up feeling more or less okay, but once I move, I'm finished. Back then my TSH was 3.6, but a month ago it was down to 2.4...

The hallmark of Myalgic encephalomyelitis is that delayed exhaustion after physical effort. Basically, you should see all your symptoms drastically worsen roughly 24 hours—though it can be more or less—after walking that mile.

You’d also likely see other symptoms: joint, muscle, or headache pain, feeling like you have the flu without the actual fever, brain fog, concentration issues, memory problems, sleep disturbances, sensitivity to sound, smells, or light, plus digestive or bladder issues, etc. etc.

As you can see, Myalgic encephalomyelitis is much more than just being tired. If it isn't Myalgic encephalomyelitis, please keep searching rather than settling for a "chronic fatigue" diagnosis, because that label doesn't really tell you anything...

Nicole Taylor5 said:Aside from that first year where I was basically housebound, I’m stuck in a moderate phase now. Even though my lab results look pretty grim, on a scale of 1 to 10, I’d put myself at a 2 or 3. Being a guy, I can lean on adrenaline and testosterone to fight off some symptoms... but the real question is how long that actually lasts. Luckily, I’ve restructured my life so I can just pace myself and rest whenever I need to. I’ve managed to mostly get a handle on the physical PEM, even if the brain fog is still hanging around.
silentbear16, I can only offer so much advice since we’re all dealing with different versions of this... but I really want to encourage you to live as much as you possibly can. I know it feels impossible to ignore what's happening to you, but dwelling on it too much will just drag you down even further.

I'm living on the edge here. Honestly, I'm actually in pretty good spirits considering everything. 🙂

When I can't get out of bed, it isn't because I don't want to. It's because I literally can't. If I just sit up in bed during those periods, my heart rate spikes above 140.

wiredpuma5 said:I’m dealing with this exact same issue. As soon as the humidity spikes and the barometric pressure drops, I feel completely hungover, and there’s just nothing that can bring me back to life. Has anyone here actually tried using guarana?

The "fatigue" we're talking about is something else entirely. Sometimes I'll be starving, but I literally can't find the strength to get up and grab a snack from the fridge.

It's not the same as feeling wiped out by the weather. And don't even get me started on the pain, memory issues, or brain fog... I'm basically incapacitated. Even in my 30s, I can't take care of myself without help from my parents.

That's why I insisted on using the term Myalgic encephalomyelitis and the G93.3 code in my first post. People constantly confuse Fatigue syndrome with just being tired. Chronic fatigue is just a symptom of many different things, from anemia to AIDS.

And Nicole Taylor5 is spot on. Honestly, I'd take AIDS over this if I could.

feralhound17 said:That all makes sense, but what happens to the individual when chronic fatigue meets physical exhaustion—where even a tiny bit of effort wipes out whatever little stamina they have left?
By that logic, she might as well just stay in bed permanently, since even the act of getting up would become an activity that triggers massive physical exhaustion.🤷

Up until recently, I felt absolutely wrecked from fatigue—I mean, just leaning my head over the sink to wash my hair would drain me—plus I had constant aches all over my body. Now, I’m doing three hours of aerobic exercise a day. I don't even think about it, and nothing hurts until the moment I stop, lie down, or lean my arms on a table or a bed.
The very first day I started working out, I almost suffocated from wheezing in my lungs, pain, and this total lack of strength...
But if I was able to handle those kinds of workouts once, I can do them again. No virus, maladaptation, neurotransmitters, or random pains are going to stop me—I'm just going to ignore them.

I also realized how crucial it is to go to sleep without letting your brain spiral—just staying relaxed and calm—otherwise, it's like the brain isn't actually sleeping. If I don't, my symptoms are way worse the next day. I feel even more exhausted, and the area around my elbows and collarbones feels even more painful—almost like a deep depletion, or maybe a deficiency in something (serotonin, maybe?), though that's medically illogical—or perhaps those areas are just sending out pain signals?🤷

It’s true, it’s such a tragedy when you lose your physical conditioning on top of fighting the illness itself. But even for people waking up from a coma—where they were completely immobile—there's still that possibility of returning to a normal life one day...

It doesn’t have to mean being stuck in bed forever. It’s really just about learning where your limits are. For some people, that might mean staying in bed permanently, but for others, it could just be some light exercise...

People living with actual CFS/ME don't need me or their doctors telling them where their limit is... this illness is more than capable of setting its own boundaries.

It’s great that you can pull off three hours of cardio every single day, but honestly... it feels pretty irresponsible to assume everyone else can just push through like that. It isn't just about willpower. You know exactly what kind of medical condition you're dealing with and how severe it is, but others might be facing something completely different or much more intense...

wearyorca15 said:Hi there. I’m reaching out because I’ve been dealing with this for nearly a year now. My symptoms tend to hit in waves:
- nausea
- chills and shivering
- digestive spasms that send me running to the bathroom
- dizziness
- frequent urination
- a slight Fever during these episodes (peaking at 99.5°F, usually around 99°F)
Once an episode passes, I’m left feeling completely drained, though some days I feel perfectly fine. On top of that, I can't sleep, especially after one of these bouts. From what I've noticed, certain foods, exhaustion, or even just being in a cold room can trigger them.
I've gone through a mountain of tests. They found gastritis, but no HP. I finished the treatment, but it didn't really do much. Back in January, I was hospitalized at Mayo Clinic for a few days with a diagnosis of "Fever with chills." They ran everything from CT scans and bowel passages to MRIs. Psychosomatic issues were ruled out. The only finding was "slightly elevated residual titers for EBV, so we can't rule out Chronic Fatigue Syndrome." So, the official diagnosis: EBV infection—chronic fatigue syndrome observed. No treatment was prescribed. This lines up with what they found at the infectious disease clinic, where they also did a ton of testing and found:
EBV VCA IgM neg
EBV VCA IgG pos 148 AU/ml
EBV EA IgG neg
EBNA IgG pos 105 AU/ml
They told me I'd already "had mono"—meaning it didn't develop into infectious mononucleosis (which makes sense, since I had a nasty, lingering virus last June before all this started), but rather that the virus is doing "hidden" damage. They also mentioned that these results just show a past infection rather than an active one, which is why many doctors don't recognize this kind of diagnosis. Again, no treatment was offered.
My primary care physician seems to agree that doctors often dismiss these kinds of findings 🙂. I've also seen on various international forums that plenty of people are struggling with these exact same symptoms and diagnostic interpretations.
In the meantime, I've tried acupuncture (which helped my stomach a bit), homeopathy, and changing my diet—but nothing has made a significant difference.
To be honest, I'm at my wits' end.🙂
Has anyone else dealt with something similar? Also, does anyone know of a specialist who actually focuses on this kind of thing?
Thanks in advance.

Unfortunately, I can't offer much help. I don't deal with the dizziness or the nausea myself. Also, during that first year, I had periods where I felt completely fine, but those windows have disappeared over time. Everything else lines up, including the EBV situation. However, since over 90% of people have had EBV, doctors don't really pay much attention to it, just like you mentioned.

How intense is that fatigue and exhaustion, if you don't mind me asking?

feralhound17 said:Chronic fatigue is constantly linked to fibromyalgia—and when it comes to fibromyalgia, theories vary wildly. Some claim it's triggered by murine leukemia retroviruses, others argue it's actually just a failure in how the nervous system repairs micro-damage—which then manifests as pain and exhaustion—while some people point to serotonin levels being too high, or maybe too low...
Basically, the standard advice everywhere is to just keep pushing through with exercise—because if you let your fitness slip while dealing with fatigue, it’s a downward spiral—and, obviously, you're supposed to prioritize deep sleep through the REM stage.
Certain types of activity, like aerobic exercise, can be helpful since they boost metabolism and slightly raise body temperature—and heat is what naturally kills off viruses and bacteria.

Here are some snippets from Wikipedia:
Chronic Pain
Main article: Chronic pain

People living with Chronic Pain deal with long-term discomfort in areas that might have been injured before, even if those spots are technically healthy now. This whole thing is tied to neuroplasticity—essentially a maladaptive reorganization of the nervous system, both in the periphery and the center. When tissue is damaged, things like inflammation and painful stimuli ramp up the sensory input sent from the body to the central nervous system. If that input stays high for too long, the brain undergoes a neuroplastic response at the cortical level, shifting its map for that specific area—this is what causes central sensitization.[32] For example, people with complex regional pain syndrome show a reduced cortical map for the hand on the opposite side of the body, along with less spacing between the hand and mouth regions on the brain's map.[33] On top of that, studies suggest chronic pain can significantly shrink grey matter volume across the brain generally, and specifically in the prefrontal cortex and the right thalamus.[34] That said, once treatment starts, these issues with cortical reorganization and grey matter loss tend to resolve, along with the symptoms themselves. We see similar patterns with phantom limb pain,[35] chronic low back pain,[36] and carpal tunnel syndrome.[37]

http://www.medscape.com/viewarticle/758463
http://now.aapmr.org/PMRJournals/201...ganization.pdf
http://www.jst.go.jp/inter/workshop/...ntation/06.pdf

http://sunburst.usd.edu/~cliff/Cours...NF/Woolf99.pdf
http://www.ncbi.nlm.nih.gov/pubmed/21632273

It's true that chronic fatigue is linked to fibromyalgia, but that isn't the only condition where you see this.

Fibromyalgia and Myalgic Encephalomyelitis (ME) are very similar, but with fibromyalgia, the focus is on pain, whereas with ME, the emphasis is on total exhaustion and a severe crash following any physical or mental exertion.

The theory regarding the mouse leukemia retrovirus has been debunked with almost 100% certainty. Those initial findings were simply wrong due to contamination.

As for exercise in ME, that's one of the most controversial topics out there. While one study in the UK showed slight improvement with exercise, many other studies—along with actual patient experiences—show significant worsening and the emergence of new, more severe symptoms. Because of this, anyone who notices their symptoms getting worse should absolutely NOT insist on any physical effort (even something as simple as climbing stairs), as it could lead to permanent damage to the heart and brain.

Thirteen years is a lifetime. Honestly, even four feels way too long for me.

I agree, Phoenix Rising is top-tier.

I'm not looking for justice or anything, but there’s nothing wrong with people getting educated. It’s easy for me since my English is solid, but not everyone has that luxury.

Besides, AIDS actually has "syndrome" right in the name—Acquired Immunodeficiency Syndrome—so we all know it's caused by HIV, and I doubt anyone would dare claim it isn't a disease.

But maybe using Myalgic Encephalomyelitis is just better to avoid those kinds of misunderstandings.

Whereabouts in New York City were you guys?

Nicole Taylor5 said:CFS isn't technically a disease because nobody knows what causes it; it's just a cluster of symptoms. It's so different for everyone that whatever helps one person might do nothing for another. On a scale of 1 to 10, where are you guys at right now?

Diseases with unknown causes are called idiopathic diseases. You don't need to know the exact cause for something to be classified as a disease. By that logic, Multiple Sclerosis wouldn't be a disease either.

It’s exactly this kind of misunderstanding—brushing aside everyone suffering from chronic fatigue without a known cause—that led me to mention in my first post that I am talking about a disease coded as G93.3 (which means the World Health Organization classifies it as a nervous system disease).

The most precise definition can be found in the International Consensus Criteria for Myalgic Encephalomyelitis, though it's all in English.

I'm not sure what you mean by "phase," but I've been in this for four years now. Most of the time I can't even leave the house and I'm living at maybe 10% of my former capacity.

Nicole Taylor5 said:Based on what I've seen on the forums, antivirals have had the best track record. They're pricey, though, and honestly, you aren't going to get an American doctor to prescribe them for this. Personally, I think most people who recover actually just heal on their own... but as time goes on, those odds drop. My take? If your body is going to fight this off naturally, it usually happens within the first two years.

Yeah, I know they're running studies on Valcyte (Valganciclovir) and some other similar antiviral drugs, but nothing's been proven yet. Even if they do work, the results have to be replicated by independent researchers, and then it'll still be quite a while before doctors are actually allowed to prescribe them.

I guess if there's no cure, it's just incurable.🤷

Nicole Taylor5 said:It’s not incurable, but let’s be real—the odds of a full recovery are pretty slim.

So, what's the cure?

Unfortunately, I haven't been able to track down a specialist here in the States who actually focuses on CFS/ME.

If you live with CFS/ME, you know how tough it is—it's an incurable condition and most people aren't looking at a full recovery. Because of that, I wanted to flag this fundraising effort for a study testing Rituxan on 140 patients over in Norway.

The drive runs for two more months, and you can find all the details on their official site MeAndYou, with donations being accepted here. Everything is listed in English and Norwegian, so if anyone needs help deciphering the specifics, I'm happy to help.

Does anyone here deal with Chronic Fatigue Syndrome, also known as ME/CFS (G93.3)?

I'm not just talking about feeling tired... I mean the actual medical condition that involves so much more than just exhaustion.