Frunobulax
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@mods: Not sure which would be the most appropriate subforum. Please move the thread if I got it wrong.
I wonder about causes of ME and the CCI connection, and I kind of developed a theory that I haven't seen discussed here (but maybe I wasn't looking closely enough). After thinking about this for a few months I'd finally like to know what you think. It relies heavily on the Yarred Younger research (https://www.ncbi.nlm.nih.gov/pubmed/30617782).
The CCI connection is a bit of a head scratcher. Clearly there is correlation, but it doesn't mesh with the ME theories we had before (retrovirus, immunodeficiency and whatnot). But considering that there are outbreaks of ME with the characteristics of an infectous disease, it appears that CCI is not the only trigger and we have to question whether CCI is the cause or an effect of ME, and why surgery helps so many severe cases. I think it could be both cause and effect, and I wonder what you think about the following theory. (And it's a theory, no more, no less. I'm not at all sure if it's true.)
Note that I can't really explain PEM/PENE this way, which is crucial. But then, I don't know any other theory that explains PENE in a satisfactory way. (See this thread.)
(a) ME/CFS smptoms are caused by inflammation and/or depletion of micronutrients in the brain. (For brain inflammation see Jarred Youngers research, youtube. If you haven't watched this video, I think it's essential to do so.)
This would explain why there is so much variation in our symptoms, depending on which brain regions are inflamed. Chronic inflammation throughout the body may or may not play a role. Chances are that the inflammation is not restricted to the brain.
Of course chronic inflammation always causes deficiencies in micronutrients, especially of antioxidants, so deficiencies can be the result of an inflammation. But the reverse could be true for other patients.
(b) The causes for ME/CFS can be manifold, as long as they lead to brain inflammation. It's crucial that a theory explains the main known causes for ME, so let's see.
(c) The role of CCI is especially interesting, as CCI surgery seem to fix a lot of ME patients. Obviously CCI (say caused by an accident) can be a primal cause, however, I think CCI may be developed after ME onset and give us a double whammy. We know that inflammatory processes damage connective tissue, and assuming that we have chronic inflammation due to autoimmune reactions and immunodeficiencies (don't want to go into this too much as it's a separate topic), it's possible that our connective tissue degrades with time and we therefore develop CCI. I'm not sure if spending a lot of time in bed or on the sofa can exacarbate this effect.
A delayed CCI could be responsible even for the onset or aggravation of the symptoms. Say we have low grade inflammation but develop only mild symptoms. After a few years we develop CCI, micronutrient supply in the brain is reduced, our symptoms get worse. Consequently CCI surgery restores blood flow and we get better.
In fact CCI could be typical for severe ME cases but optional for mild cases.
(d) Inflammations use up antioxidants and other micronutrients. Therefore, symptoms can get better with supplementation of antioxidants, micronutrients and anti-inflammatory diet (as many of us observe). But micronutrients are only a symptomatic treatment as they don't eliminate the cause for the inflammation. Still, this explains why most of us get some relief from micronutrients.
(e) Ketogenic diet helps some ME patients. We know ketogenic diet to be anti-inflammatory, but it clearly can't deal with all inflammations, so it doesn't help all of us.
(f) Brain inflammation is almost impossible to treat directly (did you watch the video?
), therefore we can't treat/heal ME with conventional drugs. Low dose naltrexone is one of the few antiinflammatory drugs that can pass the blood brain barrier, which explains why LDN can help us.
(g) As there are various causes for the inflammation, we'll see variety in the disease progression. The theory allows for this variety, both cases getting progressively worse and cases with spontaneous healing:
If we were subjected to a toxin temporarily, spontaneous healing can occur as we slowly detoxify and damaged cells are recycled via autophagy. High doses of antioxidants may deal with the inflammation. Antiviral drugs may give our immune system a boost to deal with the inflammation causes. So we have various paths to a stabilization or even a cure.
OTOH things will usually get worse untreated. The brain controls the immune system, so brain inflammation induces immunodeficiency and a serious infection could throw us out of whack for a long time. We also encounter more and more allergies and intolerances with time, and micronutrient deficiencies build up. CCI gets worse with time due to connecting tissue degradation.
The consequences of this theory would be as follows.
I wonder about causes of ME and the CCI connection, and I kind of developed a theory that I haven't seen discussed here (but maybe I wasn't looking closely enough). After thinking about this for a few months I'd finally like to know what you think. It relies heavily on the Yarred Younger research (https://www.ncbi.nlm.nih.gov/pubmed/30617782).
The CCI connection is a bit of a head scratcher. Clearly there is correlation, but it doesn't mesh with the ME theories we had before (retrovirus, immunodeficiency and whatnot). But considering that there are outbreaks of ME with the characteristics of an infectous disease, it appears that CCI is not the only trigger and we have to question whether CCI is the cause or an effect of ME, and why surgery helps so many severe cases. I think it could be both cause and effect, and I wonder what you think about the following theory. (And it's a theory, no more, no less. I'm not at all sure if it's true.)
Note that I can't really explain PEM/PENE this way, which is crucial. But then, I don't know any other theory that explains PENE in a satisfactory way. (See this thread.)
(a) ME/CFS smptoms are caused by inflammation and/or depletion of micronutrients in the brain. (For brain inflammation see Jarred Youngers research, youtube. If you haven't watched this video, I think it's essential to do so.)
This would explain why there is so much variation in our symptoms, depending on which brain regions are inflamed. Chronic inflammation throughout the body may or may not play a role. Chances are that the inflammation is not restricted to the brain.
Of course chronic inflammation always causes deficiencies in micronutrients, especially of antioxidants, so deficiencies can be the result of an inflammation. But the reverse could be true for other patients.
(b) The causes for ME/CFS can be manifold, as long as they lead to brain inflammation. It's crucial that a theory explains the main known causes for ME, so let's see.
- Toxins cause inflammation all over the body including the brain, and deplete us of micronutrients. Check.
- Retroviruses are known to cause neurologic issues. Check.
- CCI causes mechanical pressure on some brain parts, which may result in brain damage and inflammation. It also restricts the blood flow to the brain, causing deficiencies in micronutrients. Check.
- EBV and lyme disease can cross the blood-brain-barrier. Check.
- Chronic stress and sleep deprivation lead to cortisol dysfunction and weaken the immune system, making us more susceptible to inflammation. Check.
- It's possible that we have an immunodeficiency in the first place, and brain inflammation develops as a consequence of the immunodeficiency.
- It allows both for sudden onset (inflammation caused by a virus) and slow onset (caused by micronutrient deficiencies or slowly building inflammations).
(c) The role of CCI is especially interesting, as CCI surgery seem to fix a lot of ME patients. Obviously CCI (say caused by an accident) can be a primal cause, however, I think CCI may be developed after ME onset and give us a double whammy. We know that inflammatory processes damage connective tissue, and assuming that we have chronic inflammation due to autoimmune reactions and immunodeficiencies (don't want to go into this too much as it's a separate topic), it's possible that our connective tissue degrades with time and we therefore develop CCI. I'm not sure if spending a lot of time in bed or on the sofa can exacarbate this effect.
A delayed CCI could be responsible even for the onset or aggravation of the symptoms. Say we have low grade inflammation but develop only mild symptoms. After a few years we develop CCI, micronutrient supply in the brain is reduced, our symptoms get worse. Consequently CCI surgery restores blood flow and we get better.
In fact CCI could be typical for severe ME cases but optional for mild cases.
(d) Inflammations use up antioxidants and other micronutrients. Therefore, symptoms can get better with supplementation of antioxidants, micronutrients and anti-inflammatory diet (as many of us observe). But micronutrients are only a symptomatic treatment as they don't eliminate the cause for the inflammation. Still, this explains why most of us get some relief from micronutrients.
(e) Ketogenic diet helps some ME patients. We know ketogenic diet to be anti-inflammatory, but it clearly can't deal with all inflammations, so it doesn't help all of us.
(f) Brain inflammation is almost impossible to treat directly (did you watch the video?
), therefore we can't treat/heal ME with conventional drugs. Low dose naltrexone is one of the few antiinflammatory drugs that can pass the blood brain barrier, which explains why LDN can help us.(g) As there are various causes for the inflammation, we'll see variety in the disease progression. The theory allows for this variety, both cases getting progressively worse and cases with spontaneous healing:
If we were subjected to a toxin temporarily, spontaneous healing can occur as we slowly detoxify and damaged cells are recycled via autophagy. High doses of antioxidants may deal with the inflammation. Antiviral drugs may give our immune system a boost to deal with the inflammation causes. So we have various paths to a stabilization or even a cure.
OTOH things will usually get worse untreated. The brain controls the immune system, so brain inflammation induces immunodeficiency and a serious infection could throw us out of whack for a long time. We also encounter more and more allergies and intolerances with time, and micronutrient deficiencies build up. CCI gets worse with time due to connecting tissue degradation.
The consequences of this theory would be as follows.
- EPSI scans would be a diagnostic tool and could monitor progress. This would be the biggie, IMO. I'm a big fan of Youngers work and think we must support further research.
- All sources of inflammation must be found and eliminated, especially toxins (like mould or heavy metals). This is the hard part and highly individual.
Sorry, no "one size fits all" treatment. After eliminating the toxin we can try to reverse some damage. - Micronutrients must be supplied if necessary.
- Diet should be strictly anti inflammatory. (No omega-6, no sugar, no processed food, no emulsifiers and so on.) Insulin levels must be kept low, as hyperinsulinemia causes inflammation. (See that other thread and the videos linked there.)
- CCI surgery may be necessary for severe cases to increase micronutrient supply for the brain, but non-surgical methods could be explored too. (I know zip about this, sorry.)
