Dealing with Chronic Fatigue Syndrome (CFS)

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.

silentbear16 said: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.

Have you been officially diagnosed with ME? Like, where did you go to get that checked out?

Betty Lewis2 said:Have you been officially diagnosed with ME? Like, where did you go to get that checked out?

I've been dealing with this crap for 12 years. Just recently, a specialist here suggested it might actually be CFS. I ran the tests to confirm at a Quest Diagnostics lab over in Devon. Shoot me a DM if you want the specifics.

silentbear16 said: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.

Hello there!
I was diagnosed with ME back in June, and honestly, it’s been quite the journey dealing with such a wide array of symptoms... it really feels like this isn't something that's going to resolve anytime soon...🙂

amberlynx4 said:Hello there!
I was diagnosed with ME back in June, and honestly, it’s been quite the journey dealing with such a wide array of symptoms... it really feels like this isn't something that's going to resolve anytime soon...🙂

Hey,
Where did you end up getting diagnosed—like, which hospital system or medical center were you at? And if you don't mind sharing, what kind of tests did they run on you and what's your current treatment plan looking like?
Thanks.

Hey there,
I was wondering about this too... Does anyone happen to have any leads on doctors here in the US who actually know what they're doing regarding this?

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.

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

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?

silentbear16 said:So, what's the cure?

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.

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.🤷

silentbear16 said: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.🤷

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?

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.

I’ve been dealing with this crap for 13 years. That first year, I couldn't even get out of bed. Eventually, I managed to claw my way back up to about 60%. There’s a chart available if you want to see where you currently stand. Last year, I tanked down to 25% (had some bloodwork done in New York City). For the last six months, I’ve been on a strict Stone Age diet and slamming vitamins—I actually just gave myself a B12 injection five minutes ago. I feel slightly better, though I doubt it's the vitamins doing the heavy lifting. My sleep issues definitely make everything worse.

As for the name... the "syndrome" part is right there in the diagnosis, but honestly, who cares? Don't waste your energy fighting for justice. Until CFS is actually taken seriously here in the States, we aren't going anywhere. Just try to help yourself however you can... don't expect a damn thing from the healthcare system, because unfortunately, that's all you'll get. Head over to the Phoenix Rising website... you can find pretty much everything you need there.

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?

silentbear16 said: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?

I didn't go in person. I just sent my bloodwork over to Quest Diagnostics through Dr. Myhill. If you Google her name, her site should pop right up. Once the results came back, she set me on a treatment plan.

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.

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

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.

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?🤷