What is your personal theory or understanding of ME/CFS?

msf

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That ME/CFS is also a kind of slow sepsis seems also self evident to me, but this doesn’t say much as we don’t fully understand sepsis yet. Low blood volume and low perfusion of tissues, cytokine inflammatory storm, hypometabolism caused by toxins
I basically agree with this.
 

Wishful

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If you don't have any reduction in muscle endurance (i.e. you don't have to stop exercising because you are too heavy legged) then we do not have the same illness, as this is my only remaining problem.
We certainly can have the same illness (core dysfunction), just with different sets of symptoms. For me, it's the mental lethargy and other symptoms that seem to be caused by my neurons not working quite right. I do qualify by the Canadian and International criteria for ME/CFS, and the PEM is quite definite, so I'm pretty sure it's ME. I just don't have the most common secondary symptom (low muscle endurance). ME is confusing in part because it has so many possible sets of symptoms. Maybe someday there'll be specific subsets identified, but for now it's just "ME'.
 

Wayne

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ME is confusing in part because it has so many possible sets of symptoms.
It doesn't seem particularly confusing to me. -- I have a Lyme diagnosis (chronic), which generally has a huge impact on the brain and neurological system. The wide variety of neurological symptoms that result are for the most part determined by which area of the brain has been infected by the Lyme bacteria.

I don't know whether or not this is a good analogy for ME/CFS, but I do think the same cause of a disease can easily create many different symptoms. This can be based not only on where an infection in the body may be residing, but on the makeup of the individual, and their inherent weaknesses and strengths. As well as diet and other environmental factors.
 

Wishful

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So you can run for over 10 minutes without feeling like you really need to stop?
Well, I've always been lousy at endurance running, so no, but not pre-ME either. Hiking for several hours is okay. I even managed a 6-hr bike ride, with hills. The limit there was soreness in a certain part of my anatomy. I could probably have ridden longer on a recumbent bike. The 6-hr ride didn't even trigger significant PEM. A few minutes of washing windows is enough to cause PEM, since I rarely use those muscle groups in that manner, which I assume causes more muscle damage--and thus more immune system activation--than longer use of muscles in motions that I'm used to. A few minutes of ladder climbing can also trigger PEM, because that strains the muscles beyond the motions for walking or cycling.
 

Tammy

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I don't know whether or not this is a good analogy for ME/CFS, but I do think the same cause of a disease can easily create many different symptoms. This can be based not only on where an infection in the body may be residing, but on the makeup of the individual, and their inherent weaknesses and strengths. As well as diet and other environmental factors.
I agree and would add to that the different strains of a virus/and or bacteria can cause different symptoms.
 

msf

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Well, I've always been lousy at endurance running, so no, but not pre-ME either. Hiking for several hours is okay. I even managed a 6-hr bike ride, with hills. The limit there was soreness in a certain part of my anatomy. I could probably have ridden longer on a recumbent bike. The 6-hr ride didn't even trigger significant PEM. A few minutes of washing windows is enough to cause PEM, since I rarely use those muscle groups in that manner, which I assume causes more muscle damage--and thus more immune system activation--than longer use of muscles in motions that I'm used to. A few minutes of ladder climbing can also trigger PEM, because that strains the muscles beyond the motions for walking or cycling.
Yeah, we have the same illness. The window washing is an eccentric movement and therefore causes more delayed onset muscle soreness. I also find that type of exercise the hardest. I am pretty sure though that assuming you were healthy and relatively young when you got ME you would have found running for 10 min much easier before. I would say you have muscle fatigue/lack of endurance, I think you just don't push it (and please don't just to prove me wrong!). If you said you could do high rep high intensity weight training then I would concede that you don't have a problem with muscle endurance. I think one of the problems we have with this illness is that people use different terms for the same problem, since most people (like myself) aren't medical types and those medical types in general don't want to know.
 

Wishful

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I've always been lousy at distance running, even when young. I could hike up a mountain easier than running a mile. I haven't tried weight lifting, but I've dug soil (and hauled it in a wheelbarrow) for hours, for many days in a row, without problem. Maybe my leg muscles are the wrong type (fast twitch?) for endurance running.
 

msf

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I've always been lousy at distance running, even when young. I could hike up a mountain easier than running a mile. I haven't tried weight lifting, but I've dug soil (and hauled it in a wheelbarrow) for hours, for many days in a row, without problem. Maybe my leg muscles are the wrong type (fast twitch?) for endurance running.
I can also hike up a mountain easier than run a mile. The latter is more anaerobic than the former.
 

msf

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I'm pretty sure that no one is born with the wrong sort of leg muscle fibers to run a mile, they wouldn't have lasted very long in the old days.
 

Sherpa

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My theory of ME/CFS - it's usually brain inflammation & immune system imbalance and it ususally co-occurs with trauma (cPTSD, etc). Usually several layers - physically and psychologically -- are messed up. Can be aggravated by parasites, vital infections, nutritional deficiencies, food intolerance, mold, negative thinking and isolation,
 

pattismith

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The recent CCI discoveries helped me figure how much important were my neck issues in my symptoms.

I got symptoms on a progressive basis since I were 13 years old.

This was a time of first kisses I guess!
I noticed some balance problems when doing some classic danse figures.
Then (maybe as a consequence of this balance issue), I fell on ice while skating, straight on my chin, (with my neck extended );
This shock broke my jaw, so i went to hospital for surgery (for jaw) and got my chin sutured.

My head and legs pain symptoms got slowly worse over time, until a peak at 35 years old. I went to many chiropractors, and some years later one of them decided to touch my cervical spine (although i was not complaining from any neck pain at this time!)…. He wanted to make my cervical creaking, but I was too lax for that and he just managed to injured my neck….

After this, neck pain was part of my symptoms.
And when I visited a rheumatologist at 50 years old, the x ray showed arthrosis in the cervical spine, but the doc was not able to explain why.
I don't have POTS, nor OI, and I am not severe, so i don't think brainstem compression to be involved in my case. However, Some laxity in my ligaments (but not EDS) seems obvious and some minor cervical instability would correlate with my symptoms, possibly with internal jugular stenosis.
I still don't know if I will manage my neck problems with or without surgery, but I would prefer without, so I don't think of running more MRI/Scan for CCI/IJS for now...
 

debored13

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My personal belief is that, like @jeff_w states in mechanicalbasis.org , that a number of pwME have some form of cervical spine or brainstem compression. But in my opinion, there may be something upstream of this, at least in a number of cases. And I believe that what @Hip calls the “dual-factor” theory of an infection combined with an environmental factor that suppressed immunity , is consistent with this mechanical theory. The reason I think this is because many people w/ cci diagnoses do not have a genetic connective tissue disorder OR head trauma to explain the damage to their collagen.

So I believe that some environmental variable yet to be discovered is wreaking havoc on connective tissue and also suppressing immunity, to the extent that whatever initial infection people have as a trigger does more damage.
So (infection plus x) > collagen damage > brainstem compression > all ME/CFS symptoms.
Still 100% believe this
 

Seadragon

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I personally believe there are several different causes and subsets of ME/CFS patients who all suffer from a similar syndrome with a characteristic pattern of symptoms.

There seems to be various triggers for the illness such as infections, physical and/or mental trauma, environmental assault of some kind and mechanical problems such as CCI etc.

Patients often respond differently to treatments, both conventional and alternative medicine, diet, changing their environment etc.

What helps one patient does not help another and vice versa.

Some people have evidence of chronic viruses, some have evidence of autoimmunity or a poorly functioning immune system.

No-one has exactly the same symptoms.

So I think different causes in different subsets but causing similar symptoms.

In my case, I suspect a chronic low grade infection of some sort which my body can't get rid of and has remained untreated and an immune system that is both over and under compensating as a result.

Interesting to read all the theories here.