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The mitochondria have been featured more in and more post-infectious disease research. Health Rising’s first two overviews of recent mitochondrial findings featured long COVID and chronic fatigue syndrome (ME/CFS). Now we turn to fibromyalgia.
Dysfunctional mitochondria can cause pain as well.
The GIST
- Health Rising’s first two overviews of recent mitochondrial findings featured long COVID and chronic fatigue syndrome (ME/CFS). Now we turn to fibromyalgia.
- We usually associate the mitochondria with extreme fatigue, exercise intolerance, and post-exertional malaise, but damaged mitochondria can also produce pain.
- With four studies published in the last year, the mitochondrial field in FM is going through a little boomlet.
- The first study – out of Italy – used the Seahorse XF Cell Mito Stress Test to find the cells of people with FM had a difficult time responding to mitochondrial stress, and put out 20% less energy than the healthy control. People with more severe FM, though, had it much worse. An energy index found they were about 40% in the red compared to healthy controls.
- Next, a Turkish study examining microRNA that negatively impact the mitochondria hit paydirt when it found a microRNA associated with oxidative stress far more commonly found (p<.0010) in the FM patients. That finding suggested oxidative stress – a common mitochondrial inhibitor – was greatly increased.
- The next study provided a potential answer to that issue. An Italian study provided a potential therapy for the high oxidative stress (see Treatment Takeaways below) The researchers induced a fibromyalgia-like state by giving rats a drug called reserpine, which, among other things, increases oxidative stress and knocks out the mitochondria.
- The rats had trouble moving, demonstrated muscle atrophy, reduced mitochondrial enzyme activity, showed decreased activity of most of the complexes in the electron transport chain (complex I, complex III, complex IV), and increased oxidative stress and mitochondrial DNA fragmentation, etc.
- The last study used an electron microscope to find reduced levels of the “cristae” or folds in FM patient’s mitochondria – where ATP production takes place. The authors proposed that the highly reduced ;levels of cristae found resulted from the mitochondria essentially turning itself off and putting the cells in a state of hibernation – much like Naviaux has proposed with ME/CFS.
- They suggested that the mitochondrial dysfunction in FM may impact a broad array of symptoms and tissues including the muscles, nerves, and gut and called the reduction in mitochondrial cristae a “rare and noteworthy’ objective finding.
- Taking the recent ME/CFS, fibromyalgia and long COVID studies together, the last year or so of mitochondrial suggests that a hypometabolic state akin to hibernation exists that may have been triggered a stressor such as an infection which first induced a hypermetabolic state which then essentially burnt out the mitochondria. High levels of oxidative stress are a likely culprit.
- A small but perhaps telling Stanford study found that stimulating the T-cells of ME/CFS patients overloaded their mitochondria, causing increased levels of T-cell death. Indeed energy production has been linked to poor performance of both T and B cells in ME/CFS.
Fibromyalgia, then, brings an interesting twist to the mitochondrial saga in the ME/CFS/FM/long-COVID disease space: mitochondrial problems in FM could be contributing to both exercise and pain and sensory problems.
With four studies published in the last year, the mitochondrial field in FM is going through a little boomlet.
Reduced Energy Production
The latest, “Mitochondrial function in patients affected with fibromyalgia syndrome is impaired and correlates with disease severity“, came out of Italy.
The Italians used the Seahorse XF Cell Mito Stress Test which measures the oxygen consumption (i.e. aerobic energy production) of cells at baseline, during stress, and during mitochondrial enhancement. Researchers can determine such things as mitochondrial respiration, reserve capacity, and the proton leak.
The peripheral blood mononuclear cells of fifty people with FM and 20 healthy age and sex-matched controls were assessed.
The study found a 27% reduction in maximal respiration; the ability of the mitochondria to produce maximal amounts of energy. A reduction in spare respiratory capacity indicated that the FM patients’ mitochondria lacked the reserves to respond to stress that the healthy controls had. An overall assessment of mitochondrial functioning called the bioenergetic health index (BHI) found that the FM patients were about 20% in the red compared to the healthy controls.
Things only got worse with the more severe FM patients. With BHI and spare reserve capacity reduced by another 20%, the more severe patients were looking at a 40-50% functional hit to their mitochondria.
Correlating symptoms (Fibromyalgia Severity Score (FSS)) with the mitochondrial findings, however, produced only a low to moderate finding; i.e. the mitochondrial findings didn’t seem to be contributing that much to fibromyalgia symptoms measured by that test.
Mitochondria on Fire?
One miRNA was greatly increased in the FM patients.
Next, a Turkish study, “Mitochondria miRNAs and Fibromyalgia: New Biomarker Candidates“, isolated and then assessed the gene expression of the mitochondria via microRNAs (miRNAs) in 35 FM patients and healthy controls.
Gene expression studies assess the “state” of the cell, tissue, or in this case, organelle. They tell us what genes are turned on or off, the health of the cell, if it is stressed, and what it’s responding to, etc.
Genes express themselves through the strands of RNA that cells produce. By determining which RNAs get expressed, miRNAs regulate the gene expression of cells.
This Turkish team must have been pretty confident in their idea that the mitochondria are having problems in FM because they honed in on just three mitochondrial miRNAs (mitomiRs): mitomiR-145-5p, mitomiR-223-3p, and mitomiR-23a-3p.
They hit paydirt: the mitomiR-145-5p miRNA stuck out like a sore thumb and was vastly more commonly found (p<.0010) in the FM patients. The miRNA finding suggested a common theme was present – oxidative stress was out of control.
That fits with several recent findings suggesting that damaged mitochondria produce high levels of oxidative stress, which, in turn, damages the mitochondria further, and leads to immune cell exhaustion in ME/CFS.
Boswellia to the Rescue?
The next study provided a potential answer to that issue. Another Italian study, “Impaired mitochondrial quality control in fibromyalgia: Mechanisms involved in skeletal muscle alteration“, induced a fibromyalgia-like state by giving rats reserpine. Reserpine is a nasty chemical that does things like reduce serotonin, norepinephrine, and dopamine levels, increase oxidative stress, hammer mitochondrial production, and enhance inflammation… In other words, it’s perfect!
The authors were primarily interested in the rats’ muscles and central nervous system. FM muscle studies found evidence of muscle damage including ragged red fibers, irregularities in mitochondrial structure, mitochondrial myopathies, and deficiencies in the last complex of the electron transport chain.
Reserpine hit the muscles and the mitochondria hard. The rats had trouble moving, demonstrated muscle atrophy, reduced mitochondrial enzyme activity, showed decreased activity of most of the complexes in the electron transport chain (complex I, complex III, complex IV), and demonstrated increased oxidative stress and mitochondrial DNA fragmentation, etc.
An accompanying spinal and brain study found the reserpines’ activation of glial cells in two key pain regions (dorsal horn of the spinal cord / prefrontal cortex) probably caused central sensitization; the amplification of the pain-producing pathways in the brain.
The FM rats soon had a reprieve, though. Treating them orally with Boswellia gum extract reduced their oxidative stress, decreased their mitochondrial problems, restored mitochondrial enzyme production, increased mitochondrial production, and restored the functioning of one of the complexes.
Increased myogenin production suggested the rats were also now adapting to exercise well. Increased levels of PGC-1α and other factors relating to the production of mitochondria suggested that “mitochondrial biogenesis” – the production of more and more mitochondria, a key part of muscle development – was proceeding smoothly.
Boswellia extract proved to have high mitochondria rejuvenating powers. (The Boswellia tree).
Boswellia extract
Treatment Takeaways
- Boswellia extract reduced the FM rats oxidative stress, decreased their mitochondrial problems, restored mitochondrial enzyme production, increased mitochondrial production, and restored the functioning of one of the complexes.
- Boswellia has been used to treat inflammatory conditions like rheumatoid arthritis, asthma and inflammatory bowel disease. Instead of directly enhancing mitochondrial functioning, Boswellia protects the mitochondrial enzymes and the electron transport chain from the ravages of oxidative stress.
- Interestingly, when asked about Boswellia and the mitochondria, AI ChatGPT stated that Boswellia’s ability to enhance ATP production is “especially relevant in diseases associated with mitochondrial dysfunction, such as chronic fatigue syndrome and fibromyalgia, where fcellular energy demand often exceeds supply.” (!)
Boswellia has been used to treat inflammatory conditions like rheumatoid arthritis, asthma and inflammatory bowel disease. Instead of directly enhancing mitochondrial functioning, Boswellia protects the mitochondrial enzymes and the electron transport chain from the ravages of oxidative stress.
Given the evidence suggesting that oxidative stress is indeed damaging the mitochondria in ME/CFS, Boswellia might come in handy. Lord knows we need better antioxidants.
Interestingly, when asked about Boswellia and the mitochondria, AI ChatGPT stated that Boswellia’s ability to enhance ATP production is “especially relevant in diseases associated with mitochondrial dysfunction, such as chronic fatigue syndrome and fibromyalgia, where cellular energy demand often exceeds supply.” (!) ChatGPT concluded, “These effects make it a potential therapeutic tool for managing conditions characterized by mitochondrial dysfunction, such as fibromyalgia, neurodegeneration, and chronic inflammation.”
The authors concluded that antioxidants like Boswellia extract that can protect the mitochondria should get more study in FM.
Hibernating Cells in Fibromyalgia as Well?
The reduced numbers of cristae (folds) suggested to the Israeli researchers that the mitochondria in FM patients’ cells were in hibernation.
This small (n=14) Israeli study, “Mitochondrial structural alterations in fibromyalgia: a pilot electron microscopy study“, didn’t assess mitochondrial functioning; instead it used transmission electron microscopy (TEM) to peer deeply into the structure of the mitochondria in FM. It suspected that high levels of oxidative stress were directly damaging the mitochondria.
The reduced levels of mitochondria found suggested that mitochondrial turnover, or biogenesis, was impaired. Reduced levels of the inner mitochondrial folds, or cristae, where the electron transport chain is found and where ATP production takes place suggested energy production was down. Indeed, the authors reported that “partial or full loss of cristae integrity” was seen in many FM patients’ cells. The authors proposed that the damage could result in increased oxidative stress.
Despite the small sample size, the authors were surprised the low cristae levels correlated with pain intensity; i.e. the more reduced the cristae were, the more widespread pain the FM patients reported.
Citing not Naviaux but other authors, including Brian Walitt (!), they proposed that the cristae abnormalities reflected a “hibernation-like state” the mitochondria had developed to survive “stressful events”. (It was astonishing to learn that mitochondrial hibernation had been proposed in FM in 2018).
They proposed that mitochondrial dysfunction, plus decreased ATP production, compelled cells to enter into a state of hypometabolism or “metabolic dormancy”. They suggested that the mitochondrial dysfunction in FM may impact a broad array of symptoms and tissues including the muscles, nerves, and gut.
Calling the reduction in mitochondrial cristae a “rare and noteworthy’ finding of objective pathology, they called for larger studies.
Conclusion
The FM studies were all small, all came from Europe and all made sense given what we’ve learned recently from the overview of recent ME/CFS and long-COVID studies.
https://www.healthrising.org/blog/2024/10/24/mitochondria-long-covid-core-problems/
Mitochondrial energy production appears to be down significantly – particularly in more severe FM patients – and high levels of oxidative stress could help explain why. It turns out that the hibernating mitochondria/hypometabolic hypothesis – something we’ve long associated with ME/CFS – popped up in fibromyalgia six years ago.
But do the recent fibromyalgia mitochondrial findings fit with recent ME/CFS and long-COVID findings? They do.
These studies not only found a hypometabolic state was present but suggested that a hypermetabolic state associated with increased oxidative stress preceded it. One case study proposed that the increased oxidative stress caused by a herpesvirus infection caused a heritable mitochondrial mutation to be unearthed – resulting in a severe case of ME/CFS. A small but perhaps telling Stanford study found that stimulating the T-cells of ME/CFS patients overloaded their mitochondria, causing increased levels of T-cell death.
Once again, we were back to a similar scenario: damaged or dysfunctional mitochondria which can’t “take the heat” when stressed produce large amounts of oxidative stress. The successful FM animal study employing Boswellia extract suggested that oxidative stress was indeed a big deal. Finally one of the FM studies took the process a step further by proposing cells are shutting down (reducing the number of mitochondrial cristae) and hibernating to reduce the stress they’re experiencing.
On the downside, these studies tend to be small. On the upside, they appear to be pointing in similar directions.
BIG (little) Donation Drive Update
Why do we cover all these diseases? Because we believe the clues to all of them are found in each of them.
Thanks to the over 180 people who have contributed to Health Rising’s End of the Year donation drive.
This blog – the last of three to look at the mitochondria in ME/CFS, long COVID and FM – illustrates a core feature of Health Rising – an attempt to look across all these diseases for commonalities. The commonalities found thus far suggest that if you can solve one disease you can probably solve them all – and that’s why we take the time and trouble to do this. If that’s what you want to see please support us!
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Def using naltrexone every hour stops all fibro,,I have zero pain. 4.2mls every hour. It’s a Wonder drug, I’m hoping now that by resting whist using might be able to reverse the hibernation, freeze response, I read that about rats years ago, the freeze response.
I just googled Naltrexone. It says it is used for alcohol addiction. If it works for fibromyalgia, I would love to try it. I’ve been struggling with it for 28 years. Since I was 11. Nothing relieves it to hear someone say something works on fibro pain is amazing!
I use it unconventionally, not to say it might work for you normally.
I’m very glad it works for you
Is that LDN? Can I ask where you got it from please? thanks
You need a script from yr doctor, for large amounts which is what’s usually needed, it’s best to pose as a alcoholic, unless you have a open minded doctor, it Def dosent work once a day for me anyways and my followers.
There is a website that has a list of LDN prescribers.
Just fyi – typically for ME/CFS its being prescribed as Low Dose Naltrexone (LDN), usually starting very low and working up to 6mg/day, thru trial and error. There are recommendations for this drug in most of the ME/CFS treatment guides, so its becoming one of the more ‘standard’ ones. For this you’d need a prescription and likely a compounding pharmacy, as it is only readily available in the higher 50mg+ doses.
That said, this other higher dose/frequency approach is new to me so not sure if they are still getting it compounded or just dissolving and dosing from the full-strength pills. I will have to read more about this protocol myself.
Hello Vanessa, how many mg Naltrexone do you take in 24 hours?
I tried it a while but maybe not the right dosis.
Frank
Hey Frank, I’m using about 4.2 mls every hour that the same as mgs, so 4 to 5mgs, i just have to stretch out my available naltrexone over 24 hrs.
It’s better if you can add some caffiene, small amounts. Be aware not to overdo things in the endorphin stage. It’s the blockade stage at first that’s the better time to get moving done.
Today I’m starting twice a day LDN for FM and POTS. My physician told me to “play around with it “ to find my sweet spot and dosing schedule. I was using it nightly but it was a wearing off too soon. Switched to evening with same results. Then I did noon. The pain relief seemed longer. I’m only taking 0.5mg. I haven’t been able to dose up from it because it caused me worsening TMJ and headaches. I’m splitting my 0.5mg (0.25mg) to morning and afternoon To feel what that does. It seems to help with pain and fatigue.
Frank, Tell me a little bit about how you were using it?
Hi ,yr body is used to .5 so best to take that at all doses ,but up to you, it only last for a short time then leaves the body hence I use it hourly ,I’ve been experimenting for 3 years now, if you want my original abstract protocol, email me vgray1221@gmail.com
All the best .
Hello Vanessa, I took 4,5mg Naltrexone before bed, but had sleep problems. So I took it in the afternoon. My main symptom brainfog did not improve. I will try and take it more often during the day.
Hi Frank, that’s because the endorphins keep you awake, just take another dose and it will turn them off, if it’s been 2 to 3 hrs, or yes use it more regular in the day, the more you use the less brain fog, fatigue,pem and pain you’ll have. All the best
I am also one of the people who has tried the new protocol for dosing naltrexone. I commented recently here about it. I will re-post it here.
Cort featured the work of the team at Griffiths University in Australia in a post in August of this year, called “Could a Widespread Ion Channelopathy be Causing ME/CFS, Long COVID and Gulf War Illness?”
https://www.healthrising.org/blog/2024/08/20/channelopathy-chronic-fatigue-long-covid-gulf-war-illness/
In this post, Cort highlighted the result that in ME/CFS the TRPMC ion channels are not allowing ions to pass into cells, including into mitochondria. As noted in the study and in his blog post, naltrexone can reverse this block in the ion channels.
The work of the Griffiths group notes that this block often occurs post infection among genetically susceptible individuals. I have since then searched for evidence that naltrexone can be taken more than once a day. I was surprised at what I found.
I already knew that there were some instances noted in comments on presentations at the LDN Research Trust conferences every year that some people took “low dose naltrexone” in the morning instead of at night, and that some people took LDN in the morning and at night. I also knew that some peope took LDN at doses up to 25mg and found relief.
What I also found out in my search was that there are a lot of people who take naltrexone numerous times a day at different doses. I searched the web in general, Reddit, YouTube, and various patient forums. I found people whose “sweet spot” was 0.0002mg once a week. I found people who took it every other day. Some take it twice a day, and some take it three or even four times a day. One YouTube video consists of a social science researcher in Norway interviewing the two main authors of the work at Griffiths University. He takes naltrexone when he feels that he needs it and some days that is four times a day. He asked the researchers whether or not they recommended this. They refused to answer “because we have not completed clinical trials on this.”
Responses to these dosing regimes range from “I’m going to try that” to “You can’t do that! That’s not low dose naltrexone anymore!” to “When you take it so often, there’s no rebound effect for the release of endorphins, so you’re defeating the whole purpose!” But there are so many people doing so many different things with naltrexone and finding relief, that there just cannot be one way of doing it.
Naltrexone does many things. It’s an anti-inflammatory, an antioxidant, a binder of mu-opioid receptors, an endorphin enhancer, and an opener of ion channels. Maybe people have different conditions that respond to the different actions of naltrexone. Everyone is different, everyone responds differently. People take naltrexone for alcohol addiction at doses of 50mg or 100mg every night, so we know it’s safe even long term.
I do not doubt that people taking natrexone in novel ways are finding efficacy. I cannot be otherwise.
I started taking naltrexone four years ago and veeerrrry slowly ramped my way to 6mg per night where I found that it helped me a lot. So I’ve been there for 3 years now. After looking deeply into the experience of others, I began taking 6mg the mornings, as well.
The first two days were rough, I felt like I’d been hit by a truck or had the flu plus anxiety and depression. The third day was much better: the nauseating poisonous ache in my right hip was gone, the swelling in my legs was gone, the anxiety and depression were gone, but I still had some fatigue and PEM.
I upped it to three and then four times a day over the next week. Clearly the ion channels in my cells and mitochondria were blocked. When I first take it, I feel warm all over as if blood is getting to places it hasn’t been in a long time. I am not 100% recovered, I’m 76 years old and though I used to be extremely active, I have lost conditioning. I can’t jump back into activity I haven’t done in a long time. I must pace.
Having said all this, I feel better than I have in years. My hairbrush tells me my hair is not falling out at the rate it was. I have no idea if my fingerprints will come back, but at this point I don’t care about that.
This works for me. It will not work for everyone, it can’t possibly do that. I started and stopped naltrexone in the beginning. I went up and I went down in dosage. But I kept trying different ways, different times, different methods (capsules, skin lotion, and finally, dissolved in distilled water). But every time, when I stopped doing it, I got worse again, so I knew it was doing something good. Now I’m glad I kept it up.
My hunch is that there is a genetic component to this, plus a precipitating event or series of events. I hope this comment can help other people who are sitting on the fence about trying naltrexone.
That’s what I posted and I’m still using it four times a day. You don’t have to do it every hour like Vanessa does. It’s up to you. If you take 4.5mg every night, then try 2mg the next morning. You won’t feel better at first, you must ramp up very slowly. When you can take 2mg in the mornings in addition to your 4.5mg at night, try 4.5mg in the morning. Then another 4.5mg at noon in addition. Then another 4.5m at supper. Then you’ll see a difference.
After that you can dose at will. You’ll find a regimen that works for you.
Ps, that’s the post you need to send to Cort, cause he just dosent get it for some reason. It works best for cfs in the blockade time. Great Thanks, Vanessa
Hi Cort, does the study mention any specific amount of boswellia?
Hi Ann, so happy for, originally I was on a 3 to 4 hr schedule, whether it’s tolerance or the fact I don’t use caffiene anymore due t no source, which is also beneficial for cfs with ldn I’m not sure, bu every hour is my go to now, I can breath and function and without it I am dead lol
I have a long term.plan incorporating more rest to put eb to sleep, ever been a rester so fingers crossed xx
For rats, yes, I think it did – but not for humans!
The research referenced by this paper said they were using 100mg/kg!?? That’s a huge dose. The usual dose on my 500mg NOW Boswellia Extract is 1-2 capsules a day. I’d need to take 6 a day at that dosage. But that was for rats and it was to get a noticeable effect in 6 hours! It way cause GI issues so I’d work up slowly and research long term use before doing this.
I had an unbelievable visit to my ENT this week. I have been wearing hearing aids for 3 years, but my hearing had deteriorated quite a lot after I had Covid twice in the same year.
A young doctor of audiology fitted me with some stronger hearing aids that seem great so far.
She actually knew about ME/CFS and how it can affect hearing. Now it seems that Covid can be even worse.
“Sensorineural hearing loss associated with Covid”.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10072149/#:~:text=COVID%2D19%20can%20damage%20the,symptom%20of%20long%20COVID%2D19.
Hearing loss can be the only symptom after even a mild case of Covid so visit your ENT if you have any doubts.
One interesting thing she said was that with ME/CFS, you may be hearing what is said but have trouble processing it.
Since the doctor is a new graduate from the University of Florida, my hope is that medical schools are starting to take ME/CFS seriously.
Thanks for letting us know. Good news about medical schools!
That’s heartening to hear, though I wonder if it was in school that she heard about it. My brother is in med school right now and literally the only mention of ME/CFS (just called chronic fatigue syndrome in the literature of course) was a 2-3 sentence blurb in their book saying its basically psychosomatic. I don’t think they even mentioned it in the classes. Maybe other schools are addressing it? One can only hope.
A few random observations:
1. My Google search revealed that Boswelia is frankincense, which, along with gold and myrrh, was a git from the Magi in the historical/biblical account of Jesus’ birth. It seems serendipitous coming across this info so close to Christmas and hopeful so close to the New Year.
2. For the first time ever in doing a Google search I used the term “ME/CFS” instead of “chronic fatigue syndrome.” To me, my own behavior suggests that the prevalent terminology is changing and that the illness is being accepted as “real” and “significant” and “scientific.”
3. What’s up with the Donation Drive thermometer? It doesn’t seem like it has moved in more than a week.
‘ME/CFS’ does get me very different (generally more science-based) search results than ‘chronic fatigue syndrome’.
I have never heard of Boswellia & will look it up.
I am very worried to to references from ChatGPT. This is a known unreliable resource and I genuinely don’t think we should be quoting from it or any AI, when people’s health is at stake.
I find it very helpful and quite reliable.
I would also like to know if any amount of Boswellia was mentioned. I’ve been using LDN for several years and after a bout with covid last year, it seemed to stop working. However, I found a LDN FB group that suggested skipping one day a week might help and since trying that it seems to be helping again. Fibro fog gone, but still dealing with some pain. If Boswellia can help me more, I’d like to know how much to take and whether I need to start with a small amount and build up. Thanks for all you do, Cort! I’ve mailed you a check-I’m old school!
Thanks for the check! I love checks! : Thanks for sharing the LDN hack – nice! Unfortunately the study did not translate the amount of Boswellia – which I had never heard of before – that was given to rats into the appropriate human dose 🙁
I am very much liking this research. I have had CFS and Fibro since 1986. Over a 30 year period I studied medical papers and considered/investigated every possibility that I could find in search of explanations and treatment. Treatment trials included hormone therapies, diets to heal a damaged gut lining, diets and supplements to enhance my immune response, and others to dampen it. I tried everything suggested by any source that was reasonably reputable, as long as it was reasonably safe and affordable. None of these treatment trials helped (except a temporary resolution of all symptoms in response to a multi-drug 3 week regimen for H.Pylori – even though I had tested negative for it. I am still not sure why this resolved all symptoms, until I stopped abx meds). The main lesson that all of the other many treatment trial failures taught me – is that my symptoms are caused by something more basal or core to my metabolism.
While I had/have (unexplained) abnormalities in my neuro, gastro, endocrine, immune and vascular functions – addressing any ONE of these system abnormalities always failed. I came to realize that human biochemistry is so complex and interactive that if any one of these systems is significantly deregulated, it will deregulate common biochemistry that WILL deregulate all of the other systems (or keep them deregulated). Thus, addressing any ONE of these (significantly deregulated) systems is not apt to recover our health.
This led me to the confounding question of; “What problem could be deeper – more basal and core – such that it could affect all of these systems (and probably more)?”
Slow and deficient energy production in many, most or all cells – could explain why CFS and Fibro (and perhaps Long Covid) could undermine the proper function of any (and perhaps every) system in our bodies (to explain our multi-system symptoms and abnormalities). It could also explain our major subjective symptom of low energy stamina and PEM. That is why I think that this avenue of research could possibly uncover the core of all of our symptoms (rather than just another secondary imbalance – that is largely unresponsive to treatment). It is especially refreshing to be informed of a tested (safe and inexpensive) supplement to trial for ourselves (Boswellia). I hope that any who try it might please report their experience (success, failure or intolerance) to the rest of us.
To further support the potential of this research (for me personally), approx 25 years ago I had quite extensive testing done by Genova Diagnostics Labs. One of the reports stated that I had unusually high oxidant levels (and a genetic predisposition to a lower than normal production of our main anti-oxidant – glutathione). The report suggested that this weakness or deficiency might (at least partially) be offset by extra anti-oxidants in the diet. This seems to support the potential benefits of Boswellia that one of the researchers reported.
Thank-you again Cort – for your excellent synopsis. My energy is now too limited to monitor all possible sources to keep up on research, so I am so thankful for your endless work on our behalf.
Dave w….have you tried berberine or ivermectin
My slow onset of me/cfs/fibro began with an acute “infection” in fall of 1981 at the age of 21.two weeks later i developed an ulcer that healed on its own.
Then in 1993 all hell broke loose.
Fourth of July fireworks would be an understatement.i had no idea a human could get that ill.
Anyway….fast forward to just before covid I take one single dose of horse ivermectin and it knocks this “infection”way back and I begin to feel human for the first time in decades.
I gave up on the canadian system yrs ago. I get in touch with a veterinarian in Wyoming 2 yrs ago and he tells me to try berberine for h.pylori…(cured himself and over 100 others of lyme disease)….again after the berberine there is more improvement….my severe Gerd is gone to almost zero. It feels as if, months later, that my system is still trying to get back to whatever normal feels like.
A side note…a shocking admission
from my nephrologist …..recently he tells me the tetracycline I was on at the age of 14 did all this damage to me.a search will tell of what tetracycline does to bile ducts.
I am now on tudca and taurine to try getting my sludge and bile moving.
All this I’m doing by trial and error with some pretty good results. I just turned 65.
I had,at my onset in 1993, fibro so bad, me/cfs so bad that I was going to go get the gun but thankfully I couldn’t get out of the bed. Much like Whiteny Dafoe.My bedroom smelled of what I would describe as burning rubber tires.Pretty sure I was very near death.
Anyway, the berberine and horse ivermectin helped the most…..and believe you me….I’ve tried it all.one gets very desperate living on the edge.
Just to add about tetracycline for those that have been injured by it.
A search on pubmed etc. Will show it damages bile ducts and causes high cholesterol
Interesting. I just tested positive for H Pylori with occasional ulcer symptoms, and am having a lot of trouble getting the prescription combo abx (Pylera) filled for some reason. But to be honest, Im a bit leery to take it due to it containing tetracycline, as well as having to take other abx 2-3x/year for recurrent UTIs, which mess up my gut every time. On the other hand, maybe a ‘nuclear bomb’ is what I need to knock this whole
thing out?
Im frankly a bit dubious on some of the Ivermectin claims Ive read (not yours!), but I also suspect Lyme could be playing a role in my illness, so maybe its worth trying some berberine and a lil taste of the ol de-wormer!
Yes it is desperate out here on the edge.
Frustrated optimist…..a quick search online about ivermectin will teach you that it is a very,very safe “drug”.
It’s more of a probiotic. It was discovered in the soil on a golf coarse in Japan.
I will now tell you about a call I put into my natropath/physician.he is an MD as well as a natropath.
I was researching ivermectin just before covid and seen a news blurp on youtube that a man cured his cancer with fenbendizole. I got curious…
I called my doctor and asked if he had ever heard of ivermectin, he replied “yes” and says but …”before I tell you more about ivermectin, I have to ask if you are recording me”…I say “no”
He then proceeds to tell me about a lady in stage 4 cancer,given 6 months to live…,came to him to have her live monitored while on horse ivermectin from the feed supply store.He tells me further that she cured her stage 4 cancer in 4 months of ivermectin treatment.
My dr. Is not a quack dr. He is a regular md that opened the integrative medicine here at the University in my city
You can go on the flccc website…there are testimonials on people being helped by ivermectin…from cancer to parasites to long covid.
The flccc is an alliance formed by mds that were fed up of being controlled by higher ups on how they treat the sick.
You can find an md in your area on the flccc website. It’s a bit tough to navigate the “find an md” area of the website
Juice and drink cabbage juice if you have ulcers
Roonie… Thank-you very much for the benefits of your experience and suggestions.
Dave w….your welcome. Just to add….I was so desperate in the early 90s that I actually called Australia and spoke with the man himself that discovered h.pylori…Dr Barry Marshall. This was before h.pylori discovery had hit maonstream
He stated to me that he was very sure that other microbes that cause ulcers will be discovered.
Not sure why we havnt heard more from him years later.
I can still go to the wrong dr. And be told they have never heard of h.pylori!
My childhood best friend is head of microbiology here at the university in my city.
He tells me that the testing for h.pylori can be notoriously inacurate.
I had very bad breath for years until I took one single dose of ivermectin…bad breath gone!
I’ve worked with many animals both alive and dead. I wonder if I picked up some type of parasite. The night I became very sick in 1981 I was drinking well water continuously for 6 months. There was no well testing done back then
But ive learned since that many of us got sick in 1981..many in the fall of 1981.also 1986,1987
Dave….have you tried juicing cabbage juice to heal intestines
It would be a great help if people posting could state where they are from.
It often feels as if the US has zero awareness of the rest of the world and there are big differences.
Thank you.
I’m UK.
took Boswellia about 5 years ago to get my bowels under control again. I didn’t tolerate it well and can’t report any success. It didn’t even have any real effect on my intestinal complaints. I have had much greater success with a ketogenic diet.
There are also supposed to be differences in Boswellia, depending on which country it comes from.
Unfortunately, I have not had any success with it, although I have tried it several times. Different brands, in different dosages and with and without other supplements.
Translated with DeepL.com (free version)
There has been a recent webinar on
MCAS Mast Cell Activation Syndrome
which has just been posted on Youtube. One of Dr. Bob Naviaux’s former team members, Dr. Eric Gordon hosted this webinar by an expert in MCAS.
https://m.youtube.com/watch?v=lTp-1RuE6_4
I dont mean to make a comment irrelevant to this blog, but it is the only effective way to make you immediately aware of this resource.
Thanks! A blog on the recent Mast Cell Activation Syndrome is coming up and I will check this out as well 🙂
This webinar on MCAS was fine while he was describing what MCAS is. Once he started answering questions though it became very clear he doesn’t know much about what causes it, how to treat it or numerous other topics where it became obvious he is Not an Expert. (Ie. treating herpes viruses with Vit A and herb, ya good luck with that). I’d highly recommend using this website and Dr Ross webinars for correct information. His info and program got me through Lyme, Anaplasmosis, ME/CFS (with Cort) and now MCAS. He is a real DR and knows his stuff. The website is called “Treat Lyme” but he has expanded into Covid, MCAS, etc and many others. https://www.treatlyme.net/guide/mast-cell-activation-syndrome-lyme Please be careful, there is a lot of misinformation out there!
Interesting. One reason that Pregabilin is helpful for Fm patients is that our GABA is naturally low, and GABA is critical for good sleep.
This article suggests a connection between mitochondria and GABA:
https://pubmed.ncbi.nlm.nih.gov/32200800/
At some point the dots are all going to be connected!
I’m connecting as fast as I can !!
Can I borrow a pencil sharpener, though?
Joy,
Good name.
Cort and Joy, please bear with me for this brainstorm. Normally I would just file it on my cellphone but this is too important.
I feel that Glutamate excitotoxicty,
(which i have mentioned before as involved in Ishemic Cascade, and which you may also term: Glutamate neurotoxicity,)
is the KEY to the mitochondrial dysfunction or “damage” in CFS, and that the
culprit is
CALCIUM dyshomeostasis from the cell being overwhelmed by an infection,
(and maybe by lingering RNA of microbes, even if they no longer replicate.)
And that the VICTIM is NEURONS, not muscle. But that the
muscle follows suit.
This paper is only an intro, but read it, the little that they share from the PDF:
https://pubmed.ncbi.nlm.nih.gov/9914831/
THE GIST:
A Toxic challenge of high Glutamate can lead to mitochondrial saturation by Calcium (Ca2+).
Just as the ligand-gated ion channel (TRPM3 is one) responds to Acetylcholine and opens the way for Ca2+ influx, CREATING a facilitatory INCREASE in polarity in a muscle cell for muscle flex,
OR in a brain cell (neuron) for memory, learning, processing facts…
the potentiation of the mitochondrial membrane is LOWERED when there is too much Ca2+ coming into it.
(it’s in the papers. It is a fact, not a hunch)
This is BECAUSE:
The mitochondrion is a CALCIUM BUFFER !
Now… buffer just means that when there is too much,
that’s ok, you are prepared… you can buffer it.
But in the case of what I deduce is occurring in CFS:
hypoxia…from incorrect vascular Endothelial cell function
(associated with incorrect RAAS function after severe infection….CDR)
whose other name is “ischemia”
Glutamate and GABA are peas in a pod since one can be converted to the other. They collectively have the same precursor. I want to point out that there are several Dr. Jekyll, Mr. Hyde transmitters in the body. I think it is BRILLIANTLY efficient ! LIGHTNING QUICK.
What it amounts to is that the transmitter that caused the excitement can be instantaneously chemically reacted to produce the equal and opposite calm. GABA has been called the Brakes that our brain and our body hit when the Glutamate is too much. But…that is when all is good,
with no dysautonomia
(dyshomeostasis)
(Cell Defense Response being stuck in Innate Immune response mitochondrial phenotype and not moving on to Adaptive (antibody) Immune response)
So as you can imagine, some kind of dehydrogenase or something is going to be important when Glutamate is perhaps not being quickly and in a balanced fashion converted to GABA
(GAMA AminoButyricAcid)
And.. YES… I did just tell the group that 2 of the most severe outcomes of Gut Dysbiosis are:
1. Inadequate gut energy: Butyrate
2. Inadequate production by the gut, FOR the body of Acetate (Acetic acid)
Wait… did someone just say Vinegar? No?….
Remember, I’m brainstorming here…
I have an anxiety disorder with no apparent cause other than experience, but I know NOW,
that it is dyshomeostasis, of some type. I used to call it a “chemical imbalance.”
Currently my Psychiatrist and regular Doctor have been SO successful (because I don’t take no for an answer) that I am back to normal function with, say, a bit too much brain Glutamate, but otherwise a calm collected person. Just– not fully at ease.
That is just for perspective for you.
I learned this year that since the intestine produces about 80-90% of serotonin, and since the immune system is 80-90% (rounding off here) carried out in the intestine, there is a gut-brain axis and even a gut-liver-brain axis…
… since all of that… my anxiety disorder can easily be caused by serotonin dyshomeostasis in my (gut) leading to insufficent GABA in my brain, that being the cause of the disorder– the GABA situation.
That is also where CFS comes in. And especially Non-Restorative sleep.
[I had tetracylcline more than once as a child.
My friend who developed both Fibro and CFS had
so much
tetracycline as a toddler ! that her teeth all turned brown
(tetracycline is known to do that) and she had them all replaced as a young adult, having had Asian Flu in 1957 and then had, I would paraphrase her as saying, Long-Haul
Hong Kong Flu in 1968, my birth year. at her age of 16.
Bottom line? Tetracycline is a powerful antibiotic and one’s gut could never be the same again if one were not regularly fed yogurt with Bifidum, sauerkraut, etc., and resistant starches to feed those guys… since NOBODY KNEW antibiotics were not good for your biosys at that time,
since no one knew about the microbiome. And drug companies didn’t care anyway.
So yes, this Brainstorm is the product of 4.5 years and 10,000 articles of reading: To say that my anxiety disorder may be gut-derived from dysbiosis causing a GABA deficit.
Let’s call her: Lady GABA.
AND I do not consider any Brain Inflammation (brain on fire, microglial activation) to be
“immune”
from such a dsybiotic effect.
Quite the opposite.
Dr. Tom O’Bryan (doctor of functional medicine) who also follows
Dr. Anthony Fasano (key researcher for the international Autism society),
has said
… as has said the ND (naturopathic doctor) Kunkle in the (apparently) doomed MCAS webinar to which I referred:
‘If my gut is leaking because of dysbiosis that cause high zonulin levels to leak into the blood, and since the BBB also releases zonulin in a period of BBB endothelial dysfunction….does this mean… that if I have leaky gut… then I may also have Leaky BBB?
Leaky Brain?
I already believed that from Fasano and others, before O’Bryan boldy stated it, no hesitation. And I *do* filter out bold statements, like his at first, and especially the offhanded style of ND Kunkle. But if Kunkle is able to
speak as quickly as he does from top of mind, and not
from script, on the mechanisms of MCAS
I tell you of all of this since I CONCUR that a lack of GABA equals a lack of restorative sleep. My brother (no relation)(ok… a bit) has also had mood disorders and cleared them up with a Naturopath by: quitting gluten, quitting dairy, down with sugars, and GABA supplements to make sleep peaceful.
I have always enjoyed hypoglycemia, as did my mother.
I always enjoyed severe allergies during hay fever season etc. (excess histamine) as did my mother. My other brother and my sister also experienced some depression. Parents? No, just some allergy. But it takes two to tango.
THE CHASE SCENE:
It was found in:
https://pdf.sciencedirectassets.com/271289/1-s2.0-S0079610700X01599/1-s2.0-S0079610703000828/main.pdf?X-Amz-Security-Token=IQoJb3JpZ2luX2VjEIX%2F%2F%2F%2F%2F%2F%2F%2F%2F%2FwEaCXVzLWVhc3QtMSJGMEQCIBQ9MJr31Yi5LDhWv2w5W1j%2FmzpTS7m%2FaoW3OXtyWQ4dAiAsEv1dlDwij8uZrbPXjbYLXxGVA6p%2FYKGZHaxciPxaYyqzBQhOEAUaDDA1OTAwMzU0Njg2NSIMMUQtISODF54dZn4kKpAFXbxE6Sl083YW%2BD0eNRYdC562O2E6ILizmDW0z%2BHB52IKxo%2FxaoLDC8Sk5XJDMrPfZMwMWb3bIYJi9W%2BJqIXQnP5q8whcM9A7YEBr6w6cd3mtMRMh0XeZqOyGbzIf9BWn6wfYzbcnu5HJJHrf8%2Bd9U42%2Bbao%2BcgzRizbo1vWBF9EkeP6qD2FGodJA75JgvDfah7YUhsNe%2FQlPcwBIunLHsZZqAIP7WL4%2BfMLksteUMTDDNhc9lgG3dU84zkzzSJSX2apaxsr4BbI2gLzIEe%2Fs9Kw3308bx20XFUlXVWPEn9HJAGi07IFiXBHXpC%2FGBoHxdHixwgSvjujzabWvLq%2Bj4ic3g3dIlf6xRmz8xXVQDwspFFLAfgk09%2B3d%2B4MT6U0p%2Bpow6TbBtNUZbl85rZ6Z2Ak4fUlJ7D4urhMnOfJqi3EjwiAWqf5wplluzdS2jzt6%2Baneg96P9k8bbW7aihAdAD%2BvE4UKgV4IiX3PlkwH%2FuewVKHyhjRIiH0tPz07JvEdSIlc2wDg6u7dfFdkOqUgP%2F71w2B%2BfRJPo9rrH2qoVCY7SS%2FcB7LAbOXoMoWxbBHhiUWljFOks%2FxHetnHR6etAOcE07iYsTbfbyXM6vCzYJalWZPkRsS%2BmW1zJ5KkBtSASkOeomRTCVvMRhTL0mFR2UjXT7LALhw1TGlIWyYlyHhzP%2FQMdy8WQMksV2gjtRTOQSEtP2xvrMtl1hJ1WloA1M1aHSYYCybNt1EN%2FLxysmjGE%2Br2FwufWPNyQvAD2eceY1r3Tr9zB9CkfnfIqP6oJlvi513UNLiRQ2D%2BABU2AHEzUuk%2Fo2pXGobXbQjxDvR76ctnO%2FZvZg6zkWqDdIr6Dld%2Bn3SQRj15PuwG0nmFNuEwy8CHuwY6sgFLCkucs3FSSG4XSS5YK7rsNoJm703JhwSBY4GZLDd4YManHlxk4K2V1H6Snpf%2F72krhpjnzXsYtsbh9dKUNLtXUveR2XxKD1fSHMYsBymza%2BQZx%2BDkpmY%2BJ1CYaXB9IL5Kbh2UcKd6HvK0V1X3s9G4xJmphDxyG2XshqnKarcnxbA%2FfgYqzNjBIIFOqMiBjzFAAX7ZiKeNhkZvrWYFEmjZ6vx2SycXBaD9Wdi04FDhgbsB&X-Amz-Algorithm=AWS4-HMAC-SHA256&X-Amz-Date=20241217T220238Z&X-Amz-SignedHeaders=host&X-Amz-Expires=300&X-Amz-Credential=ASIAQ3PHCVTY47LNJFGX%2F20241217%2Fus-east-1%2Fs3%2Faws4_request&X-Amz-Signature=d59a067f48864c2ca275293a325ed0968975b80751c4ef47cf56c18270bfac25&hash=f4289842fd8b8e014eaf8cee21279d8f253a78cebdead6a371152c45e4dd07a5&host=68042c943591013ac2b2430a89b270f6af2c76d8dfd086a07176afe7c76c2c61&pii=S0079610703000828&tid=spdf-ae1a610c-3c20-4e41-8a44-f2870031e3f1&sid=61dcf9927f8723483369d3a5110ad3036860gxrqa&type=client&tsoh=d3d3LnNjaWVuY2VkaXJlY3QuY29t&ua=05015e0255035c570750&rr=8f3a32d349964bd6&cc=ca
that…
a Glutamate OVERAGE to
Nerve cells (neurons)
triggers at first a calcium surge in the cytosol (cell liquid) that usually could be Buffered and from which it could recover,
but…
that when the Overage of Glutamate is a Toxic Challenge of 10 minutes or more ,
the mitochondrion will have NO CHOICE
but to BUFFER the ensuing Calcium overload to the cytosol.
It doesnt want everyone to die. It is a MANAGER.
But if you havent read much about Apoptosis: planned cell death when the conditions are dire,
mostly because of microbial infection, but also from flawed cell division….
then you may not know that the MOST IMPORTANT TRIGGER of Cell death is CALCIUM OVERLOAD. In which the cell let in Ca2+ through the Acetylcholine Ligand-gated ion channel to
allow the flux of Na+, Ca2+ and K+, but then
without enough ATP, the cell can not EXPORT enough Na+ or enough Ca2+
comes into crisis.
the Mitochondria, God love them, are not stupid.
If the Hypothalamus is the BRAIN’s brain, if it needed one,
then the Mitchondria are the Confuscius of the cell.
Mitochondria: CAN’T DO– WHAT THEY CAN’T DO !
if that means Glutamate is OUT OF CONTROL, and the mitos can’t buffer that much Calcium, so they lose the charge or “electrical potential” that a healthy mitochondrion is meant to have….
then the Mitos will falter.
If this continues, Calcium can NO LONGER be absorbed by heroinic Mitos.
If the Mitos COULD continue at this point, then maybe we’d slow down, take a breather, recover.
But when something in a cell has gone SO WRONG
that even the Mitos can’t handle the Calcium overload?
then this is the classic Apoptosis sign:
I am DYING. And that is what will transpire.
It will include PEM. Suddenly fewer cells to share the work.
Maybe a CASCADE experience of cell death.
SOLUTION: fix the reason why Glutamate overloads and
GABA does not save your brain, your nerve cells.
Glutamate is Healthy.
It is one of the 2 principal exciters of the brain/body.
The 2nd is Aspartate.
Without Glu (tamate) there would be no muscle flex.
***Ahhh… now I see…***
The Neuron experiences this Glutamate overload. Not the skeletal Muscle cell. The Neuron is a cell just like a skeletal muscle cell, but more susceptible to harbouring pathogens such as Herpes. 1,2,3,4,5,6,7. Epstein Barr. HPV.
We mostly think of the Neuron acting normally, but then
somehow
in CFS
I deduce that:
the Sk. muscle cell fails for some unknown reason.
Because something previous to it fails.
What if, HR faithful group,
the Neuronal cell fails first? And if it soon fails in continuing Stimulation via Acetylcholine to the Sk. Muscle?
Final thought for today:
I think that if that last event might happen then:
A stress Test in a lab could DOCUMENT
that the subject said they FELT in their mind that their muscles could not go on…
And secondarily (we used to believe) the rational brain would decide that the BODY should not go on.
DOPAMINE motivates both Sk. Muscle and Cognitive Brain motivation. An atheletic type SHOULD be able to PUSH their body further than their BELIEF that they can not continue. I did, in a race, once.
The lab stress tests in
EARLY
HR (not as early on as Phoenix)
Reported that:
The subject FELT that they could not go on.
But when the muscles were measured as to their remaining
fuel… yes they could be forced.
This is not a criticism– AT ALL.
Instead this is an OBSERVATION:
That a NERVE signal is WRONG.
The Sk. muscle might be FINE ! But the Mind said: “NO ! I am exhausted”
Wait though:
What is in between the MIND (CNS)
and the
BODY ??
Anyone?
The PNS !!!
The peripheral nervous system:
responsible for
a) being told what to DO
b) saying how it’s feeling NOW
AND either
c) being given pain/suffering feedback and being sent pain relief (except in Fibro)
such as being given DOPAMINE TO MOTIVATE !!! the belief that it should continue, despite the pain gain,
just as the cognitive brain has reasoned it is capable !!!
OR
d) or reporting back that NO! I am ABOUT TO fail.
Aye, there’s the RUB !! (–W. Shakespeare)
For if in the mind it is nobler to continue to tax the body,
BEYOND the body’s will to comply,
then the body might comply.
Yet, if the neurons of the mind fail to hear the feedback of the body, that it is strong,
then the mind will be weak,
and the body may not argue.
What we have, then,
is TWO
Neuronal failures:
1. Cognitive brain
2. Peripheral nervous sytem Afferent nerve reports.
NAY !!!
There are indeed 3:
3. THE LIMBIC BRAIN.
The limbic brain is ALSO a slave to Neuronal dysfunction !
If the Amygdala senses INCORRECTLY, DYSFUNCTIONALLY on a chemical level, and not at all on a level of realism,
then EMOTION TOO is enough to derail
the Engineer: Amydala,
the Locomotive Motor Cortex
and
the Caboose Body
If the boss says we can’t?….. then we can’t… even if we can
Love the connection between dopamine, the limbic brain and peripheral nerve issues (note studies showing reduced prefrontal cortex functioning (which should reign in limbic system)). Klaus Wirth thinks calcium issues are paramount in the mitochondria.
Thank you Cort
I just want to add this about pain:
Most of us are Vit D deficient and Magnesium deficient, one from lacking sun, the other from depleted agricultural soils.
As you must be aware, Ca and Mg are a tag team:
We need a 2:1 ratio of these electrolytes for optimal function.
So for most of us 300:150 mg
and for some of us 600:300 mg
Ca:Mg
But I read that Magnesium is a part of pain relief too.
So if you have too little, the Calcium increase intended to raise a pain alarm goes unchecked
(checks and balances)
It’s hard to be spefific about one type of cell vs another, but lets suppose I were correct about nerve cells being the cause of CFS.
Im guessing that while muscle and skin and endothelial cells have nociceptors to announce damage, its the nerves that have to relay that afferent information to the brainstem before the analgesia system is going to send neurotransmitters efferently back to the dorsal horn ganglia
which in central sensitization is: the center.
It us there that unrelenting noxious stimuli cause a doubling of processors if the pain
which is why a massage, to me , might feel like blunt-force trauma to you if you have Fibromyalgia.
Ok, so if magnesium is a natural pain reliever (when plentiful),
then if you get this calcium FLOOD in the cytosol and mitochindria can only buffer so much
it makes me wonder *how much* mag would be enough.
We know Mg can calm restless legs syndrome and stop an eyelid twitch.
What can it do for CFS and FM and
—why isnt it?
Forgive me for not understanding all of what you are saying, it is very scientific, but can I ask a basic question? Does this mean that calcium supplements could be making symptoms worse? Sorry if I have got the wrong end of the stick completely!
Neuronal dysfunction?? I’ll drink to that!! (I don’t ‘drink’) I have Post polio Syndrome: PPS! neurons in brain are definitely implicated in muscle dysfunction!
This research summary was titled; “The Mitochondria Pt. 3: Could They be Causing the Pain in Fibromyalgia?”.
Intuitively, I would answer “yes” to this question. Please consider the following; If you (or even someone who is healthy) stands on one leg for a time, it will get tired when you (or they) run out of energy. If you continue to stand on it, that “tiredness” will become increasingly uncomfortable, until it eventually becomes achy and finally outright painful. Pain is the eventual outcome of a sustained deficiency of energy.
For several years – when I first considered CFS and Fibromyalgia as “symptom labels” for my health challenges – I struggled to differentiate the two problems. It seemed that CFS was generally perceived as a chronic fatigue (or a lack of energy) problem, while Fibromyalgia was generally perceived as a “muscle pain” problem.
My problems commenced with flu-like symptoms that included both lower energy, and stiffness and achiness (such as when you have the flu). Then, my predominant symptom was lower than normal energy. Over the years as my energy stamina kept declining, my general stiffness, achiness and pain kept increasing.
So do I have CFS, Fibromyalgia or both? I think both – even though many CFS patients report pain, and many (if not all) Fibro patients report chronic fatigue. In the end, I don’t think that the labels really matter much. For my purposes, I describe my symptom profile by saying that I have both. For practical purposes, I think of Fibromyalgia as being CFS + pain (or perhaps, CFS to the point of pain?).
This is just my take, on my health challenges.
Dave:
(everything I say next is out of deep respect,
and therefore intent will to facilitate your healing.)
Dave: Excellent self-expression as a rational being. Fair, balanced, humble, logical. But you realize that. You strive for that.
And I could not agree more with your tentative and humble conclusions.
At a previous point in my Dragon-slaying period of my battle with reason to ALLEVIATE both CFS and Fibro, since my friend had both, and 6 more, all officially diagnosed…
I was conflicted:
Did all the failure occur first, and then if got EVEN WORSE,
the sharp pain and skin zaps, or broken glass in skin, or nerves on fire begin?
Made sense.
But I knew a woman who had been a nurse who had suffered from Fibro, yet kept on working after retirement.
She never lamented. Only if asked would she comment.
THAT’S WHEN I REALIZED:
(no offense, Cort, but)
One disease is mainly mitochondrial,
but the other is
mainly afferent/efferent nerve, and analgesic Dysfunction.
YES, of course, if there is very little differentiating one
chronically fatiguing, brain fogging, emotionally defeating,
can’t wake up condition..
then
if another has only one extra bad feature…. sure… makes sense.. kind of …. in a vacuum…
that they must be peas in a pod.
NO.
CFS is about energy. It seems to be about at least 4
conditions in a predictable syndrome.
Here is the challenge, Dave:
I have said this to myself and to others since
2020:
“There is only one kind of sick. The body can output
about 10 major groups of symptom… but that’s IT.
We ALL fit in, fibro, cfs, common cold, over-exertion.
All of us.
“CFS or Fibro or Lupus
is not original. Each can only draw upon
these roughly 10 symptoms” — I said that.
If we compare CFS vs Fibro,
this is a great elucidator:
CFS pain may be widespread but without brain zaps,
skin zaps, flaming broken glass embedded in ALL OF one’s skin surface.
They don’t compare. Not in terms of pain vs TORTURE.
Not in what I have carefully read from patients.
Fibro may have 9 Fibro points, equalling 18 if it is
equilateral.
I guess ALS may be the most terrifying and torturous condition. It is called Amyotrophic Lateral Sclerosis.
If I understand it correctly, which I must confess I can not
do, It is NOT in parallel. They say Amyotrophic Lateral Sclerosis,
but, forgive me if necessary, it would rightly be called
Myotrophic A-lateral Sclerosis.
“patients with ALS have a multitude of nonmotor symptoms; in fact, it is currently considered a multisystem disease. ”
“While astrophysicist Stephen Hawking lived for 55 more years following his diagnosis, his was an unusual case.[52]”
it has also been associated with extramotor impairments (i.e., mood disorders, cognitive and language impairment, sleep problems, sialorrhea, and pain). ALS is no longer considered a purely motor disease, but a multisystem disease with extramotor involvement [1–3].
Dave, not directed to you, but, trying to be linear, and objective,
when I read the “ie. ” list, this list does not seem
peculiar to ALS. Nor to Fibro, or CFS, nor Lupus or MS.
Everyone seems to have these weaknesses, REGARDLESS of the silly english-science-old-person-school-of-medicine nomenclature.
And they neither : define the pathology (how/why)
nor : cure it. Only treat with drugs.
But okay. Negative… not encouraging…
but it POINTS to HEALTH, not drugs. Not control !! NURTURE OF ALL BODY SYSTEMS, since it hereby seems that no system is *immune* from our 10 symptoms
In my own thoughts I figured that CFS was the beginning,
and then maybe, if one were EXCEEDINGLY unlucky, FIBRO might be added on.
Nancy Klimas opposed this notion. She theorized that Fibro was more likely the gateway to CFS.
I can follow that logic because:
I have read of many Fibro patients who do not have a huge chronic fatigue issue. Yes, it is draining, but the pain is the main thing.
MY take, though, given the symptom progression of my friend was:
CFS is a given.
It is a given
( for those of you who *may* not have yet read up on all autoimmune diseases)
in most of the famous Autoimmune diseases.
Widespread pain (at least ache), non-restorative sleep, brain fog, emotional exertion cross-impacting both physical fatigue and cognitive exhaustion.
I saw them, as the low-level or baseline
symptoms of much more severe organ-specific syndromes.
FINALLY:
I decided to
SEPARATE FIBRO FROM CFS.
FIBRO patients may not have fatigue, may not have brain fog.
CFS patients may not have sharp pain, but only generalized or widespread pain. I read that it may start on the left then move to the right.
In ALS,
how did they nomenclate this terrible syndrome as
A-myotrophic?
Ok…ok.. so it is not Myotrophic?
Good.
This means that then it must be : Neurotrophic.
AWESOME.
for an analyst….
What I shared today of reading research on
Mitochondrial dysfunction
is this:
The NEURON may be overwhelmed by Glu (tamate)
excitotoxicity.
RIGHT THERE… ask yourself why. What for. You will be on the path.
Please, folks, try to see our bodies in the following way:
a) we eat
b) we digest
c) we filter
c
i) i might get leaky gut
—ALL controlled by the VAGUS
…..
….nerve from the brain… and this nerve BYPASSES The spine,
and goes down your neck, outside the CNS. Period.
d) the nerve cells and muscles cells get the nutrition
e) the brain decides
f) the organs or the muscles respond with ACTION
This explains the exertion bottleneck in CFS
BUT : !!!
The cognitive brain cells are not skeletal muscle.
The limbic brain cells are not skeletal muscle.
So then,
WHY ?????
is the whole CFS research about MUSCLE ??!!!???
WHAT TIES TOGETHER
cognitive,
limbic and Amygdala
Skeletal Muscles??????????
Nerves.
Therefore we must refocus
NOT
on aerobic glycolysis in muscles
but on
Aerobic glycolysis in NEURONS
Here is an excellent description on the nervous system disruption in fibromyalgia from Tonix Pharmaceuticals that now have FDA approval to produce their new drug, TNX-102 SL.https://finance.yahoo.com/news/tonix-pharmaceuticals-announces-fda-acceptance-130000940.html
Another Red Herring !
This is the cause and the path to cure Fibromyalgia
https://youtu.be/7PCOrzXTk2Q