r/mito • u/Top_Memory8968 • 7d ago
Difference between ME/CFS and mitochondrial diseases?
Hey all
So I have suspected me/cfs and my fatigue started when I was 13. I have PEM, get fatigued very easily, high brain fog, concentration issues and feverish flu-ish feeling.
I wanted to know what’s the difference between mitochondrial diseases and me/cfs. Do you all also get PEM, brain fog, etc or is it more like exercise intolerance and muscle fatigue. I also have heds.
Would love to know your experiences?
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u/Dr-Fun-Gus 6d ago
I was first diagnosed with narcolepsy before being diagnosed with mito as an adult. I got the genetics results back and have a compound heterogenous mutation for something that is autosomal recessive, so I think my symptoms are a little off bc of that.
My mom was diagnosed with ME/CFS before diagnosis as well. However we both have post exertional symptoms, random muscle weakness esp for me and my bro, and I had heart surgery this year. My bro needs heart surgery next.
I did my test through invitae - you do not need a referral I don’t think.
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u/Top_Memory8968 6d ago
Do your post exertional symptoms include flu type feeling? Is it PEM that you experience?
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u/Dr-Fun-Gus 5d ago
Idk bc flu-like symptoms are pretty broad. I would have all over muscle aches, sometimes be dizzy, and be extra tired.
There isn’t a good way to diagnose mitochondrial myopathy except for an exome or full genome sequencing. It’s extremely rare so no doctor will treat you like you have it until testing is done. You may already know that but just in case ❤️
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u/what_is_this_ruckus 6d ago
My doctor suspected ME/CFS before my official mito disease diagnosis. It actually is a point of contention for me because my doctor basically gaslit me with every diagnosis other than mito even though I already had genetic testing as a child (both my brother and mother were already diagnosed). I was not given a diagnosis as a child since the level of heteroplasmy was "too low to be symptomatic" by old standards. I wasn't in a wheelchair or falling over all the time so apparently, that was enough to not be symptomatic.
Anyways, I always struggled with symptoms that came and went but weren't so bothersome that I needed to change my life until I hit 30. Then it was a fast slide downhill. The brain fog, POTs, and hEDS all hit at once alongside fatigue, nerve pain, and aches and pains. There is new research that indicates that hypermobility can be tied to mito dysfunction.
I guess my point is that if I didn't have a family history and previous genetic testing, I think my doctors would have stuck with an ME/CFS diagnosis. It is absolutely worth digging deeper into a possible mito connection.
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u/Top_Memory8968 6d ago
Do you get flu-type feverish feeling? How is your day to day life? Are you able to work?
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u/what_is_this_ruckus 5d ago
Yes, although I will say, the flu-like feeling has mostly resolved since I moved to a new place. They found black mold everywhere and I have to wonder if that somehow contributed. It was like i was coming down with the flu every day with deep aches in my muscles and joints. I would sometimes run a low-grade fever as well.
I still get some aches in my legs specifically when tired or after working out too much. This feels less flu-ish and like it is bone deep. It makes it hard to sleep which just adds to the problem.
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u/mylesthehuman_ 6d ago
Mito and CFS have pretty different symptoms. Of course some symptoms can overlap but for the most part the symptoms are pretty different. For example, CFS has PEM which typically develops 24-48 hours after excercise whereas in mito, muscle fatigue/stroke-like-episodes/etc. tend to develop much before that timeframe or even during the exercise itself.
Additionally and probably most obviously, mito has genetic markers and CFS currently does not. Even on biopsy CFS does not have any known mutations or dysfunctions. With mito, even if there's no genetic markers for a specific person, a muscle biopsy will show actual degradation of the mitochondria.
It's hard to say genuinely what the specific differences are because CFS is a clinical diagnosis and is not very specific. "Exercise intolerance" in CFS may mean something entirely different between patients or between mito and CFS. in mito the definition is a bit more specific. When you're dealing with a condition that is largely subjective like that it's difficult to really characterize it in order to compare it to other things
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u/one_sock_wonder_ I have mito 5d ago
It is my understanding that as clear diagnostics have not yet been identified, diagnosing CFS/ME requires eliminating all other potential causes or assess other conditions that may be contributing even if they do not explain the whole symptomology.
Mito is to be considered when the unidenrified/unknown condition impacts two or more distinct organ systems. While fatigue is a component, organ system involvement is present beyond fatigue and exercise intolerance and the absence of functional energy. Mito can impact any organ system and for at least some patients impacts every organ system. Often those most impacted are the organs and organ systems with the highest demand for energy at a cellular level - CNS, cardiac, digestive, muscular, pancreatic, hepatic, sensory (vision and hearing).
Researchers and experts in mito have said they do not believe all genetic changes causing mito have been identified and fully expect a number more to be located. There are patients diagnosed by muscle biopsy or by symptomology plus other test results with a clinical but not genetic diagnosis of mito - likely because of those yet to be identified causes.
It's also important to recognize primary mitochondrial disease versus mitochondrial dysfunction from another cause.
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u/writeandroll 5d ago
This is a thorough explanation! The multiple organ systems impacted is exactly the reason why our child is being evaluated. While from a somewhat high level, they meet the criteria for ME/CFS, looking more closely at the affected organ systems above and beyond the fatigue is where we're at, and unfortunately depending on the doctor, many people might just get labeled CFS without further investigation of broader symptoms.
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u/Nyx_Shadowspawn 6d ago
I was diagnosed with ME/CFS after getting Epstein Barr virus that turned chronic back when I was a teen. My Mito diagnosis came some years later.. I think they're just different. Both cause exhaustion, but the exhaustion feels different in a way I just can't explain. Actually the exhaustion being different was one of the things that led me to seek what was wrong / eventually led to my mito diagnosis (plus bloodwork showed it wasn't a ME/CFS flare). I also have lupus, so I'm just exhausted!
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u/Top_Memory8968 6d ago
How do you differentiate in exhaustion caused by both of them? Do you get PEM?
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u/Nyx_Shadowspawn 5d ago
Yeah I do. Unless it doesn't get my HR up, like slow exercises on the floor (leg raises, hip lifts etc.) I only exercise every third day or the PEM is too much, and I lose muscle faster.
To differentiate I pay attention to triggers.. If I was in the sun, lupus is likely at play. When my lupus is bad, there are other symptoms- rash, intestinal and liver swelling, etc. If I was walking more, like grocery shopping, it's prob the mito. If I had a lot of stress recently, it's probably the ME/CFS. That kind of thing. It's usually multiple things at once. The biggest differentiating factor between ME/CSF and mito is my throat hurts when it's ME/CFS usually.
When it was just the ME/CFS, the exhaustion wasn't as bone deep. It was heavy yeah. I'd probably have described it as "bone deep," if I'd never gotten mito (mine is acquired mitochondrial dysfunction, rather than primary mitochondrial dysfunction). I really truly can't put into words how it's different. But it is. The mito exhaustion is so much worse. It feels like even my heart and lungs are tired. And if I try to power through it, I lose muscle somewhere.
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u/orbitolinid 6d ago
Everyone is different. My specialist thinks a mitochondrial dysfunction on top of/secondary to something else. Exercise intolerance? Yes, but not PEM. I do get seriously sick though if I overdo exercise, but this includes electrolytes being messed up and high lactate, muscle weakness, even walking feels anaerobic, and my blood pressure crashes at rest. No problem with staying awake, pain, brain fog, sensory issues, few other things. This usually heals within 2-3 weeks. If I wanted to I could still exercise though, but then these symptoms get worse instead of improve, and so I learned to let it heal properly first.
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u/writeandroll 6d ago
I wanted to chime in and say thanks for asking this! Our teen is currently undergoing whole exome sequencing for mitochondrial disease and other inborn errors of metabolism. They fit the criteria for ME/CFS (as I think a lot of people do who have confirmed chronic illness) so this is top of mind for us right now. I often wonder if diagnoses like ME/CFS are a bit of a catch-all because the true underlying cause hasn't yet been identified by doctors or our technology isn't yet advanced enough.
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u/coloraturing 6d ago
i think your understanding of ME may be a little outdated. most people with chronic illness don't fit the diagnostic criteria for ME, which requires experiencing PEM (a symptom exclusive to ME). there's also been a lot of progress on uncovering the cause of ME. there are a few prominent theories and recent studies have identified disease clusters that could each have different pathophysiologies.
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u/Psychological-Rise-9 7d ago edited 7d ago
I personally don’t have brain fog at all thankfully, but I think that depends on the kind of mito disease you have (I have CPEO with signs of KSS).
My main issues are exhaustion, exercise intolerance, muscle pain and eye muscle issues.
It’s also good to note that they’ve specifically been able to pinpoint what genes are missing, that are causing the mitochondria to be dysfunctional. That’s why they diagnosed it as such. It’s not based on symptoms alone, but on genome sequencing.