The first blog in a couple of weeks is different – it’s not on ME/CFS/FM or long COVID per se – and that may be a good note to start out on. It’s a reminder that ME/CFS is not alone – that it shares broad themes with other diseases – some of them major diseases that are getting much more research. If we’re looking at how to end ME/CFS/FM and long COVID, some of the answers will likely come from them.
Of those diseases, multiple sclerosis (MS) must be near the top of the list. MS is a major fatiguing illness and the fatigue is unusual: it’s often the first symptom to show up and it doesn’t track with the demyelination found; i.e. something else associated with MS is causing it.
Some studies suggest that something could be happening in ME/CFS as well. A recent study, “Regional microglial activation in the substantia nigra is linked with fatigue in MS“, pointed an arrow at the same part of the brain – the basal ganglia – that studies suggest play a major role in ME/CFS. Plus, the authors suggested the same cause – microglial activation/neuroinflammation – that Jarred Younger and other researchers have proposed is at play in ME/CFS is also at play in MS.
In fact, the authors proposed that,
“Future research studies are needed to compare the fatigue-related microglial changes in MS with other diseases such as CFS and Parkinson disease and identify common and disease-specific mechanisms of fatigue in neurologic disorders.”
This “identify common and disease-specific mechanisms of fatigue” is where the juice lies for us. Could at least some similar mechanisms of fatigue be present in all these diseases? If they were, that would be a huge boon for diseases like ME/CFS/FM and long COVID.
Of course, there’s also the MS and ME/CFS Epstein-Barr virus (EBV) connection. EBV may be the cause of MS, and it’s a clear trigger for ME/CFS. Now comes the coronavirus which, like EBV, can quickly trigger an ME/CFS state. Will it trigger MS as well? We don’t know.
EBV, in the form of infectious mononucleosis or glandular fever, rapidly triggers ME/CFS but takes years to trigger MS – so the coronavirus-MS connection will take some time to sort out. Just as with ME/CFS, though, MS researchers are looking to long COVID to help them better understand MS:
“We believe that the “research rush” triggered by the novel Coronavirus may propel studies on MS; vice versa, deepening our knowledge on MS pathogenesis and its relationship with viral infections could guide the investigations on COVID-19 immunopathogenesis.”
The Study
Now comes another intriguing MS study which is not focused on fatigue but on demyelination; i.e. the loss of the protective covering of the neurons that occurs in MS. Various studies have suggested that some demyelination may occur in ME/CFS, but if it does, it’s orders of magnitude lower than found in MS. Nevertheless, the study points to intriguing connections between three major players in both MS and ME/CFS: the brain, the vagus nerve and the gut.
In “Key role of the gut–microbiota–brain axis via the subdiaphragmatic vagus nerve in demyelination of the cuprizone-treated mouse brain,” the researchers gave mice an MS-like condition, then cut the connection between their vagus nerve and their brain. The longest nerve in the body, the vagus nerve is the conduit between the immune system in the body and the brain, and a regulator of both the immune and the autonomic nervous system.
Severing the connection between the gut and brain helped both the brain and the gut. Whether the problem lies in the gut, the brain, and/or the vagus nerve is, however, unclear.
The mice responded to the rather dramatic intervention positively – both the neuroinflammation and nerve demyelination declined. That was noteworthy, but the study didn’t stop there – and fact that it didn’t is emblematic of the increasing number of tools researchers have to throw at a disease. It seems like the era of the “one-shot” study is drawing to a close. More and more, we’re seeing complex studies that assess multiple systems which almost invariably show how linked together those systems are.
Citing the ever-increasing literature regarding the gut-brain connection and the vagus nerve’s role in that connection, the researchers turned to the gut. (Gut studies suggest the gut may be “off” in similar ways in MS and ME/CFS (impaired short-chain fatty acid/butyrate production, leaky gut). Could severing the vagus nerve positively affect the gut as well?
It did. Cutting the vagus nerve connection to the brain restored the bacterial diversity that had been lost when the researchers plunged the (poor) mice into their MS-like state. Plus, it normalized the levels of six of the metabolites that had gone wonky. Statistical analyses suggested that the recovery of the bacterial flora, changes in gut metabolite levels, and myelin recovery were all associated with each other. In other words, the brain-gut connection held – the two appear to be inextricably linked.
Why would cutting the vagus nerve help? Because it constitutes the “immune superhighway” between the body and the brain. Signals regulating the immune systems of the brain and the body whiz up and down the vagus nerve. Once that dysfunctional nerve was cut, the inflammatory signals it was transmitting stopped, the inflammation died down, and the gut started to repair itself.
The authors concluded:
“Given the crucial role of the vagus nerve in the gut–microbiota–brain axis, vagus nerve stimulation may be a promising therapeutic option for MS patients, it will be of great interest to investigate whether vagus nerve stimulation can improve clinical symptoms.”
There’s no doubt that vagus nerve stimulation has a way to go but it’s potential is clearly large.
The Gist
- ME/CFS/FM and long COVID are not alone. Besides the usual suspects (post-treatment Lyme disease, Gulf War illness, irritable bowel syndrome), similar themes pervade other illnesses – some of them major illnesses that get bountiful research funding. If we’re looking forward to the end of ME/CFS and similar diseases, it’s likely some answers will come from these other diseases.
- Multiple sclerosis with its high degree of fatigue, its Epstein-Barr virus trigger, and basal ganglia, gut, and autonomic nervous system findings, stands at the top of that list.
- A recent mouse study explored the effect of the gut-brain axis on MS by severing the communication link – the vagus nerve – between the gut and the brain. Not only did the degree of nerve demyelination reduce, but the diversity of the gut flora, several gut metabolites, and some gut bacteria returned to normal.
- It wasn’t clear exactly why this happened, but a dysfunctional vagus nerve, or an overheated gut, or an overheated brain (or all three) could be responsible. The study showed in spades how inextricably linked these systems can be: the gut can spark inflammation in the brain, the brain also affects the gut, and the vagus nerve is the conduit between the two.
- The authors zeroed in on the vagus nerve, suggesting that vagus stimulation was the next logical step to try.
- The solutions to diseases like MS and ME/CFS could come together; once we get to the heart of one, the pathway to the other will show up. That would be possible if a common disease state (gut issues, sympathetic nervous system activation, neuroinflammation, infectious trigger?) gives birth to different manifestations of the core problem.
- The coronavirus pandemic and long COVID have opened up tremendous opportunities in this regard. Finally, medical research has been tasked with precisely understanding how an infection affects the body and how it can cause chronic diseases. It’s in that interface that we stand to learn so much.
It’s not just MS, though, as a great deal of attention to the gut-brain axis is being given to other major neurological diseases. A recent review article stated:
“it is clear that changes in microbiota composition play a vital role in the pathogenesis of various neurodevelopmental and neurodegenerative disorders, such as Autism Spectrum Disorder, Alzheimer’s disease, Parkinson’s disease, Multiple Sclerosis, Amyotrophic Lateral Sclerosis, anxiety, stress, and so on.”
The gut-brain axis may not stop at neuroinflammation either. One review paper that focused on how gut issues may be able to impact the mitochondria in the brain reported: “In this review, we focus on how exogenous agents, i.e., viral pathogens, or unbalanced microbiota in the gut-brain axis can also endanger mitochondrial dynamics in the central nervous system (CNS).”
Similar problems in the gut-vagus-nerve-brain axis appear to be in play not just in neglected diseases like ME/CFS, fibromyalgia, and Gulf War Syndrome – and long COVID – but also in major diseases like MS and other neurological disorders – something that bodes well for progress in this potentially vital area.
In fact, it’s possible that the solutions to diseases like MS and ME/CFS could come together; that once we get to the heart of one, the pathway to the other will show up. That would be possible if a common disease state (gut issues, sympathetic nervous system activation, neuroinflammation, infectious trigger?) gives birth to different manifestations of the core problem.
Avindra Nath certainly thinks so with regard to the ME/CFS/CFS/GWI/Long-COVID constellation of diseases. He believes if you solve one, you’ll be able to solve the others. Time will tell about these other diseases.
Whatever happens, the coronavirus pandemic and long COVID have opened up tremendous opportunities to relook at the role infections and pathogens play in chronic disease. The medical field can no longer stop at trying to fight off an infection – it now must learn how infections can cause long-term problems. Not since the HIV/AIDS epidemic – and probably not even then – has the medical community focused so closely on a pathogen. That new turn bodes well for all of us.
And the common denominator with M.E. and M.S. is Epstein Barr virus.
It is indeed, Wayne. And when I am tired I always have sore throats and tender glands from the bottom of my ears down my jaws!
Agree
I’ve had m.e for nearly 7 years .I’m 64.had a very bad chest infection to begin with .recently read that acidophilus isn’t a good probiotic for m.e sufferers .I’ve been on that for years so will have to have a rethink .read it can make m.e worse.got covid right now and dreading the after effects.
Careful, not everyone with me/cfs has had Epstein Barr Virus. I’d say the common denominator is a reactivated infection, which can include EBV, but also covers those with HHV6, CMV, Ross River virus etc. reactivations.
If you read my comment again you will notice that it was about the association of M.E. with M.S…….
(Not just M.E.)
I understand, you’re saying that the commonality between ME and MS is that people with either condition have had Epstein Barr Virus, but that is simply not true. Only a subgroup of ME patients have had EBV. There are a significant number of ME patients who have never had EBV.
My ME/CFS was caused by 2 years of low level chronic carbon monoxide poisoning. And I developed a wicked case of SIBO during that time..
Not arguing etc…
Most people, 90% have been infected with Epstein Barr & don’t know it. Very common virus. Lays dormant but can recirculate anytime. I was diagnosed with “Chronic Active” Epstein Barr Virus couple years ago. It’s a death sentence. New blood labs say it’s gone dormant again. I have ME/CFS & Undifferentiated Connective Tissue Disease.
Just read studies today that Long Covid is a neurological disease. Hopeful for treatments but it said people who’ve had ME/CFS for quite a while probably won’t be helped…bummer. Stay strong 💪.
The vagus nerve is hyperstimulated in this WiFi world
Research?
Please provide a credible scientific source for that 90% statement. Also, It is a waste of time to focus efforts on EBV, when a some people with me/cfs have never had it, like myself, I have tested negative on multiple occasions. Most healthy people have had EBV too, so if EBV alone caused me/cfs, then nearly everyone would have it! Let’s look at what ALL people with me/cfs HAVE had, which is a significant viral, bacterial, physical or toxic shock to the body. That’s the common denominator. Me/cfs can’t be caused by EBV if some people with me/cfs have never had it, and many more people have had it but remain healthy!!! It is not the cause.
Where is that proven? Most people carry the EBV.
This is great. Thanks Cort.
I’m always bleating on (previous blogs) about the benefits of FMT for ME/CFS. I’ve done it, it was significant for me. The RESTORE-ME and RECOVER studies should be enlightening once they are complete.
I’m currently using a vagus nerve stimulator. It seems to do something (now that’s gold standard medical research results!). So I’ll stick with it, but they are not cheap as they are not covered as a therapeutic in anyway shape or form where I live.
The one bit of insight I might be able to provide about the vagus nerve stimulator is one time recently I was using mine in front of an endocrine surgeon. They use various nerve stimulators during surgery in order to find and avoid damaging nerves (as I understand it). Their reaction to the vagus nerve stimulator I was using was something like “that is the carpet bombing equivalent of what gets used during surgery”. Hence why vagus nerve stimulators make the corner of your mouth curl, neck vibrate etc.
And thanks to those mice for taking one for the team.
Which vagus nerve stimulator are you using?
gammaCore Sapphire. It was recommended by my pain specialist.
Lon, this is the first time on the message board I have read an expression of gratitude for the mice (or other animal subjects). Thanks for reminding us of the role these creatures play. (They are suffering mammals, too.)
Hi to all.
Great article! yeyyy!
Thank you, mice and to the author of this summary.
I do not understsnd how cutting the vagus nerve and stimulating the vagus nerve would be considered the same.
To me they sound like the exact opposite.
Can someone explain that to me please?
Thank you to those responding!
I don’t either – apparently those two do make sense – but I don’t know how. Perhaps stimulating the vagus nerve helps it regain its proper function – which includes toning down the sympathetic nervous system. If its not doing that perhaps it’s simply passing pro-inflammatory messages back and forth from the brain to the body and the body to the gut.
Thanks for sharing your interesting insights re vagus nerve stimulation, I’ve started using the gamma sapphire myself recently, not sure of benefits yet. Can i ask were your surgeons suggesting that it might be too much stimulation when they made the “carpet-bombing” remark?
Dee,
Great question – sorry for my carpet bombing-analogy – it wasn’t a good one. Fortunately the answer is no, there was no problem with the stimulation level or method of application.
The comment from a surgical perspective was just the imprecision of application of stimulus relative to what is required for surgery. And the imprecision isn’t an issue either – as I understand it, it is that same imprecision that makes the unit usable for someone standing up looking into a mirror trying to find the correct spot of their neck versus a patient on the operating theatre table with the nerve more or less directly exposed via a surgical wound.
I started using a TENS unit on the vagus nerve. One receiver behind my ear, one receiver on the vagal branches.
The results are amazing.
More regulated sleep, longer amounts of energy, less overall pain.
I have a thoracic SCI on the heart chakra. It’s 4 inches of viscerated cord. It has dozens of tears that expose the cord bundle and a partial sever where the cord was folded for 34 years.
My neurosurgeons explained it’s as if I have dozens of permanent MS lesions.
Can you be more specific about where you position the leads from the tens machine please.
I use Hi-Dow wireless receivers. One goes on the left vagus nerve right behind & slightly lower than the ear. Not the right, as it leads more directly to the heart.
The other one(s) connect to the Vagus nerve as it branches out to gut organs. This can be anywhere from the stomach to the intestines.
This is not medical advice, I am not a doctor and this method is not approved by Hi-Dow.
Like dozens of MS lesions…isn’t that something. It reminds me of the punctuate hyperintensites studies have found in MS and an MRI showed that I have. Not as many as MS but more than normal.
I guess the thoracic SCI refers to a thoracic spinal cord injury. Do you know how that came about?
I was the 80th person known to have ever sustained a tethered thoracic spinal cord.
I am the only one to have had it for longer than a few months.
The cause was undetermined. It baffled doctors for months because they’d never seen something like it before. It was clearly not a birth defect.
The SCI was a thoracic tether sustained in infancy. By the time I was 34, four inches had been sucked in and chewed up by the vertebrae.
It was untethered in 2005 and the operation made it 10,000x worse. Being a quadriplegic would have been better. It’s a miracle that I can still walk. But I live in such gnarly pain it’s unbelievable.
He waters thats amazing!
What is a “TENS unit on the vagus nerve.”
where do you get it?
Wouldn’t acupuncture be able to do something similar?
Have a look at A Vagus Adventure, Dawn Wiley’s Facebook group with lots of help on tVNS.
I have an acupuncture procedure that uses electric stimulation to my stomach area and it helps my Mast cell activation/digestion a lot. We’ve discussed the vagus situation but she’s never suggested something like mentioned above. I’ll show this to her and ask her about it.
Hi so I’m considering buy a tens machine to use I have fibromyalgia which part goes to ear red or black and where did you put the other part please and thank you in advance my email is judyskinner2@yahoo.co.uk
To sever the longest Cranial Nerve in the body, which carries so many important pathways for a vast variety of necessary bodily functions borders on insanity, unless, of course, you are a performing it on a cuprizone-compromised mouse.
CFS is caused by many events or conditions. To try to make it a one-to-one relationship to a specific microbe or insult limits possibilities.. And does that not also border on insanity? To so limit oneself?
For example, a genetic condition where a deficiency of mitochondria exists, because of the GENES has nothing to do with a pathogen. (Genetic testing is available for this condition.)
Repeated poisonings produce ME/CFS. The toxins not pathogens that underly CFS, might create the “terrain” that invites aberrant microbes to thrive, like EBV, etc., which then are accused of the illness. Perhaps falsely.
Presence of a pathogenic or overgrowth of an undesirable microbe is a reflection ONLY of the fact that the bodily environment ALLOWED it to occur. As Pasteur reportedly said while dying, “It’s the terrain . . .”
Care of your microbiome closely resembles creating an organic garden to grow your food plants. Takes time to create and continual loving maintenance. An act of love.
Every tissue of the body carries its own microbiome, not just the Small and Large Intestines, the entire digestive tract.
I think with these large complex studies we’re moving more and more away from one-to-one to one relationships. This study couldn’t tell us whether the gut, the brain or the vagus nerve or perhaps all of them were the culprit.
I would guess with the gut, though, that coronavirus is itself changing the composition of the gut.
All of them! Tri-directional
Dear Cort,
Could the acetylcholine receptors be the connection between the gut, brain and vagus nerve. The nicotinic for LC and the muscarinic for ME/CFS?
If so; LC came last but first to serve with low dose nicotine patches as the perfect agonist to get rid of the virus. (Leitzke, 2023)
Pyridostigmine (Mestinon) and Physostigmine will have to do the trick for the rest of us, someday?
Is that too good to be true? That text seems to make sense, but it is way above my pay-grade.
I only have 2 % of your knowledge, can you make sense of it?
I’m afraid it’s above my paygrade as well.
Perhaps another resaon to start fecal transplants? Wondering why this is not progressing in any field despite the fact that it has been in existance for at least 10 years. I first heard about its success at a medical congress in Quebec city, Canadaat that time. Somehow I am getting the impression only Pharma – related research gets government funding. Any thoughts on that?
Suzanne,
I like your comment very much as it is very measured and holistic. I’m hoping you would provide some guidance on caring for the micro biome – probiotics to start with and progress to, type of diet to follow, books or articles that are not too complicated as guides.
I have been diagnosed with CFS for 38 years after two bouts with mono in which I barely recovered from one and went back to work and came down with it again.
The intervention that has made the greatest difference for me is frequent B12 injections (originally 3X/week)). I purchase the B12 from Germany and self inject because it’s over-the-counter there and so far I’ve been unable to find a doctor here in the USA that will prescribe enough.
I have IBS -constipation.
I’ve tried various probiotics with little success, eat only grass-fed finished beef and fish my husband catches. Most of the produce we eat is organic. I make our bread with whole-grain Einkorn which I grind at home, but I do not levain it with sour dough, I use yeast.
I’m sorry for the long note. I’m hoping you will revisit this page and respond.
Thank you and best wishes for everyone suffering with this illness
Kit
Hello Kit from another Suzanne,
I am curious about the B12 self-injection! I live in Germany and I see you can buy ampoules at online apotekes. But I would have no idea how to use them. How do you do it, if you don’t mind?
B-12 Injections – now there’s an old treatment possibility in ME/CFS that I haven’t seen mentioned in quite a while. It must have helped some people as it was frequently done Glad to see it pop up again.
Hi Kit. B12 has also been my number 1 crutch for decades. I find sublingual adeno B12 works better for me than other forms of B12. Wonder if anyone else has found the same?
Hi Kit
Transdermal Vitamin B12 has been of benefit to me. I just spray it on clean skin once a day, between 5 and 10 sprays. Available from Dr Sarah Myhill. UK
Dear Kit,
Thank you for your kind comments. Recovery is unique to the individual, and I am not qualified or licensed to guide you.
The statements about B-12 are a great start. I use sublingual methylcobolamine, b/c I have the MTHFR gene defect and b/c reportedly with aging the body produces less and requires more. Protocol for Life and Neurobiologix. Also, Neurobiologix provides a topical B-12, which I use when I remember.
A few days ago, I learned that there are 4 types of B-12, but have not followed up my discovery of the details. Cyanocobolamine is the least expensive and the least effective, it was said during the call. Methylcobolamine is more easily absorbed and I have noticed the difference between the two. I invite you to follow your own pathway of discovery regarding B-12 and its various forms.
I wish you the best on your journey with this health challenge. Please remember, we are all in this together, invisible, hope-filled, gaining more empathy and compassion while being some of the bravest folks on the planet.
It’s not easy being green!
Highest Regards,
Suzanne
Hi Suzanne,
I’m a retired nurse, so I have a lot of experience with injections. I would suggest that you go to:
https://healthunlocked.com/pasoc
It’s the home page for the pernicious anemia society on health unlocked. They are based out of the UK.
Many people on that site still inject into the muscle. There is clear evidence that injecting into the fat is as effective. That’s how I do it for two reasons:
1.) It is safer
2.) It is much less painful
I use diabetic insulin needles. They must be able to hold 1ml (cc). Some sites sell them in 0.5 ml which is too small. You must use a much larger needle to inject into the muscle
I use methylcobalamin injections which is just a type of B12. I do that for two reasons:
1.) I have two SNPS on the MTHFR Defect so I think it’s likely better for me
2.) I find that the hydroxycolbalamin recommended by the WHO stings a lot
There should be many YouTube videos , especially if you use diabetic or insulin in your search terms to guide you with step-by-step instructions. Diabetics inject insulin into fat as opposed to muscle. They used to do it a few times a day until we got longer-acting insulins and I doubt many would want to give themselves an injection into the muscle that frequently. You may see it referred to as a subcutaneous injection or abbreviated as SC.
I have pernicious anemia as evidenced by low B12 blood count, and a high mean corpuscular volume. Oral B12 never helped me even a little. It would raise my blood level of B12, but my mean corpuscular volume, a Cardinal sign of pernicious anemia would be as high as 107 ( Most labs put the high at 97-100) In other words, it wasn’t getting into my cells
I needed very frequent shots initially to feel good for more than a few days.
Also, keep in mind, that it would take about four days for me to start to feel better after an injection and it would only provide relief for approximately four days.
There are other tests to help discern if the B12 is getting into your cells Vs just in the blood. You will learn about all of that on the PA site.
It is a water soluble vitamin so there is no risk of over dosing.
For me it is a miracle. If I take it now once or twice a week (initially) three times) I have no fatigue, no sore throat, no sore, aching muscles Assoc with CFS and no pins and needles and numbness in my hands and feet as Assoc with PA
-as well as fatigue.
I cannot recommend that site enough for the wealth of information one can garner from it. They know more about B12 than anyone on the planet!
Don’t be put off by some of the highly technical talk you will find on there-it’s here as well and I just ignore it. Most of the time it’s not necessary.
I hope this answer was somewhat helpful to you, if not, try me again for more clarity. I’m happy to help.
Kit have you tried inulin for the IBS? It’s inexpensive and doesnt taste too bad – I put mine in coffee usually, sometimes in pancake batter. Good for constipation and in clinical trial improved the good bacteria cort wrote about recently.
Hi Tatt,
Thanks for the tip on insulin. I haven’t tried it, but I’m going to order some.
Kit Burke – Quick alert
In the commentary at:
tatt on February 11, 2023 at 12:27
tatt asked if you’d tried INULIN for the IBS-C, and you responded that you hadn’t tried INSULIN.
Maybe a typo, but didn’t want to spoil a possibly helpful treatment with a misunderstanding.
Thanks for your good advice.
Hi Kit, I am prone to C as well. I found the book Breaking the Vicious Cycle by Elaine Gottschall to be very helpful in understanding the food/gut connection. Even if you don’t do the diet in the book it’s a fascinating read.
I see you are very careful with the food you eat Kit, I don’t know if you eat freshwater fish but if you do, this may be of interest.
https://www.ewg.org/news-insights/news-release/2023/01/ewg-study-eating-one-freshwater-fish-equals-month-drinking
Best wishes.
Just wanted to add a caveat to this discussion on B12. For some unknown reason taking B12 causes me to crash. Severe fatigue, brain fog. I keep trying different kinds and doses but even in very dilute doses, one drop is all I can handle per week! Beats me. I’m going to try and find a spray version and see if bypassing the digestion helps because my levels are low per lab testing.
Hi T Allen
Just wanted to say after reading your comment about Vit B12 causing you to crash,
Please be careful using a transdermal delivery method as I believe Dr Myhill states you could absorb 6% through this method.
I mentioned I had benefited through VIt B12 transdermally as I felt it may be helpful to others but I certainly would not wish anyone to feel harmed by trying something like this. I am not qualified to comment except in my own capacity to try something and say if it had been helpful or not. It just goes to show that we are ill for different reasons or we are having different reactions for different reasons.
My awful dizziness has been helped through taking Dr Myhill’s basics alongside the transdermal Vit B12, which I added 2 months after commencing the basics. When I took a break from the transdermal B12 I had a deterioration, followed by improvement upon recommencing. I don’t know the reason for this as my blood test results have never come up showing I am low in Vit B12.
It is very sad that without proper guidance on how to live with ME/CFS from our medical professionals that we feel we have to self experiment. In my case I may not be absorbing B12 orally in the way my own GP thinks that I am. Recent research has led me to believe that blood test results for B12 may not always be accurate.
I have been ill for 24 plus years now and only received a diagnosis 2.5 years ago. Since then I have tried as best I can to make use of information in books and on the internet, this led me to try Dr Myhill’s methods, with caution as I really don’t have a clue how best to manage this horrible illness. Still on a journey with all of this but felt able to say I had experienced a benefit.
I hope that you find a way through your illness.
RT
HI RT, Thanks for the warning. I’m always very careful with anything I try. I tried one drop of liquid B12 on the inside of my forearm and 30 minutes later it was slightly red and when I touched it I got a definite “itch” sensation. So now I’m pretty sure I’m sensitive to cobalt which isn’t a surprise since I have a contact allergy to nickle. But thanks for posting because if you hadn’t I never would have figured this out! I’m glad you are making good progress, gives the rest of us hope! 🙂
Hi T Allen
Just pleased you didn’t go for it and then experience a crash, that would have been awful. It’s a reminder to me that not everyone will benefit from the same things and that we do need to be careful.
Thanks for letting me know , I hope the information you now have can help you to progress forwards with your allergy.
RT
There may not be huge funding for mecfs but cancer is spending a lot of money looking at metabolism, immunity and mitochondria in tumour microenvironments; MS is looking at the vagus nerve; c diff is making doctors interested in fecal microbiota transplants, etc.
So I share cort’s optimism that the answers we need could be revealed by an adjacent field of study. Put another way, we have a stake in research funding in general ,not just mecfs funding.
Thanks. Yes- cancer is another field rife with opportunity. Lots of basic science going on. Another possibility that I need to check up on is the NIH effort to get at the molecular roots of what happens during exercise. Who knows what that might unearth that could be helpful in this systemic exertion intolerant disease :).
TAllen. I hope you get this reply. I’ve read that if you need folate as well as B12, you need to replace the folate first otherwise you can have a bad reaction.
This blog is right up my street 🙂 Over the years, I noticed a distinct connection between my gut, brain & sympathetic nervous system. I’ve been really interested in Jarred Younger PhD’s work on the brain & also Amy Proal PhD & Michael VanElzakker PhD. So I’ve been focused on trying to improve my gut health, lessen my possible microglial activation in my brain, calm my sympathetic nervous system & deliberately enhance my parasympathetic nervous system. I view sleep as a vital component & have tried to improve its quality, for years.
I’m also drawn to Robert Naviaux’s Cell Danger Response & Robert Phair’s Metabolic Trap & now the Itaconate shunt idea (which I don’t pretend to understand!)
Anyway, to cut a long story short, I’ve made a specific improvement (in terms of available energy) over the last 6 months or so, having been battling away for about 15 years. I have been working on all aspects of my life, trying to calm everything down (which isn’t easy for lots of reasons…) and it seemed to be working.
I started having some really deep naps in the afternoon & I started to feel like I was getting over the flu. Like the fever had broken & I was over the worst & on the mend. But I hadn’t have a fever recently, as far as I knew. So did my immune think I did? For the next few months, I slept as often & as much as I could. Interestingly, I slept better in the armchair, than in bed. It felt a bit cosier & snug & I believe that’s important.
Now, many months & a lot of sleep later, I feel more normal. Like some switch has flipped. I feel that I’m in a different state now, than I was before. I still don’t push things. I still have food intolerances & I can still trigger some sort of an immune reaction in my brain but specifically in terms of energy availability, I definitely have more on tap. Yay! 🙂
I’d be very interested to learn more about how you have done calming. I was set up to start tens machine from 1 January plus using beurer & Sensate devices plus was going to do keto and intermittent fasting but broke my hip 2 January so everything went haywire
Honestly Sally, I would do anything that relaxed me & as much as I was able for. I think it very much depends on your energy levels. I don’t have a tens device, or anything but I would be interested in them. I’m not a perfectionist & I’m a bit of a DIY kind of a person. So, in general I’d try & avoid what set my sympathetic ns off – particular food in my case & relax & rest as much as possible. Does that make any sense?
Deep naps in the afternoon – what a great sign! Congratulations 🙂
Calming the system down via meditation and/or mindfulness is another way to positively affect the vagus nerve and put it back on the right track. I’ve really upped my meditation – it was’t doing anything that I could tell at about 30 minutes a day so I upped it to about an hour and a half a day and I think it’s seeping in there and calming things down a bit. I’m going to keep it up and see what happens.
Yes, I think what I’ve been doing, is similar in a way. It sounds a bit simplistic but it seems like a lot of things I was focusing on, started to work together & I managed to relax & feel safe & cosy enough to drop into a much deeper sleep, just for a few hours. And then I just slept whenever I could. I was also dropping off to sleep in the armchair, in the evening, until the early hours.
Initially I thought this was a bad thing to do & that I should go to bed properly. But then I realised that I was falling asleep, watching something on TV & it was a really lovely, relaxing feeling & was resulting in a great sleep. I’m still doing this now & I’m actually recharging more. I can feel it. My days have so many more usable hours & I generally don’t need a nap anymore. Though I’ll have a nap, if I need one. I feel different in a good way.
Hi Tracey Anne (Burgess)
To hear that you are having such great success after battling away for so many years is very encouraging, I intend to keep going and will look into foods that are considered less inflammatory as I think I could gain further benefit there. I do find some relief from indigestion by adding some vitamin C with a meal, it’s a little acid that I can manage and takes that slow digestion feeling away.
Congratulations on finding more energy.
Hi RT,
Thanks 🙂 You’re right when you say I was battling away for years, that’s absolutely true.
I think we’re all so different and have such individual issues. I think trying to eat more food that’s less inflammatory is a good idea. I felt that I was highly inflamed, just about everywhere, at one point. So my focus has been on an anti-inflammatory diet, calming down, trying to improve sleep & taking various supplements. Interesting that you feel the Vit C helps. I take Vit C & a Digestive Aid, which has some Betaine hydrochloride included as well as enzymes because I thought I wasn’t digesting my food well. I take other supplements too, that I’ve added over the years.
In the absence of any useful help from many doctors, I think the best we can do is track our own symptoms and try and figure out, as best as we can, what we think is helping and what seems to be making us worse. And then, just when we’re making headway something else can appear! Good luck 🙂
If you find a chair cosier have you tried a weighted blanket on your bed? I dont use one myself as a duvet feels comfy to me but it might tattgive you that cost feeling.
A weighted blanket sounds like a lovely idea. I think I understand what I’m looking for and why I need that cosy/safe feeling. I was also thinking about getting more pillows and some soft cushions. I need a den 🙂
If we talk about possible similarities of MS and ME/CFS it may also be worth remembering that research has identified a pretty simple method of halting the progression to clinically definite disease when given after a first demyelinating event, and this is vaccination with BCG. ((https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3873620/)) (and this is not murky research but based on a solid RCT).
Given the now well supported role of reactivation of endogenous EBV in MS this may indicate that BCG may be able to interfere with reactivation of latent viruses, such as varicella zoster virus (VZV), cytomegalovirus (CMV) or EBV, and there is indeed some evidence for this. ((https://pubmed.ncbi.nlm.nih.gov/31055165/)).
So for me, learning from MS may also suggest that it may be about time to investigate possible disease-modifying influences of BCG vaccination in ME/CFS, as proposed here:
https://www.kinder-verstehen.de/wp-content/uploads/BCG_hypothesis_short_251222.pdf
BCG shows up again! From the study:
Compared with placebo, BCG significantly decreased disease activity at MRI and the number of new T1-hypointense lesions during the first 6 months. In addition, BCG may have longer effects: treated people had less T1-hypointense lesions and cumulative number of relapses after 18 months and showed a reduced risk of conversion to CDMS over 5 years.
Pretty impressive yet I assume the 2014 study has not been replicated. What a shame. Hopefully, it will be at some point.
This article was very interesting about the vagus nerve! especially about how it can be problematic.
I’m NOW I’m doing work with the vagus nerve, specifically learning about my maladaptive stress response and cell danger response as previously mentioned. after all, it was emotional stress that got me in this mess.
Afew years back I was very hopeful about the BGC vaccine…but Epicgenetics decided it was too risky to do this because they didn’t want fibro patients getting covid, and having fibromyalgia and a weakened monocyte response was protective…I dunno, I have given up on that for now.
Thank you little mice for your contributions 🙂
I have been trying the breathing for sleep and “nose, low, slow” breathing exercises on YouTube from Oxygen Advantage and believe it is calming my system as I measure it by the amount of watery saliva in my mouth.
•I’ve been trying to incorporate this breathing technique for a few minutes throughout my day.
~Cautiously optimistic 🙂
https://medicalxpress.com/news/2023-02-chronic-fatigue-syndrome-distinct-microbiome.html
Feb 8 “Two studies publishing February 8 in the journal Cell Host & Microbe are taking a closer look at ME/CFS as it relates to the microbiome and the metabolites that microbial species produce.”
“Both studies found that ME/CFS is associated with reduced levels in the gastrointestinal microbiome of microbes known to produce the fatty acid butyrate. These microbiome disruptions could explain in part how the immune system becomes disrupted in people with ME/CFS.”
Much more dysbiosis early in the illness, aligned with greater gut symptoms early in the illness. Certainly aligns with my experience.
I also had much worse allergies early on.
The fatigue got a little bit better over time but it’s still there as my main symptom 30 years on, together with PEM.
The interesting thing about the above two studies is that they found different intestinal microbiomes and serum metabolites in long term ME/CFS patients compared to short term ME/CFS patients. I haven’t seen another study that makes this comparison.
Very good and interesting studies!
Still some key questions that they raise. Is lower butyrate producing bacteria a cause or consequence of the illness? They suggest it could be the latter, that sedentary lifestyle can result in these lower levels of bacteria.
But that simply exacerbates the illness.
I suspect it’s a consequence, but time will tell. But that would still have value in explaining the illness, given that consequence seems to feed back into a worsening of symptoms (ie. fatigue)
This reminds me of the Ending Suffering Project on this website. Was there ever a follow-up on that blog?
Thanks, Fleur
https://www.healthrising.org/blog/2021/04/19/ending-suffering-project-chronic-fatigue-syndrome-fibromyalgia/
Rather embarrassingly it didn’t get started. The reason is because I wanted it to be a video series where I interview people. I learned, though, that living in a van makes it impossible to do the video uploads I need to do that. They just take up too much bandwidth with my hotspot. I’m dropping that part of it, though, and am starting anew. I just interviewed someone to begin the project and so it’s beginning again. 🙂
Nothing to be embarrassed about!
It was just that it really resonated with me, still does. Besides, not everyone (me included) isn’t up to lots of screen time and therefore reading articles is easier?
Either way, thanks for keeping us all up to date with everything you do 🙂
PS – are you okay, living in a van?
Microbiome changes are unlikely to be the root cause of me/cfs, rather an effect. Something caused the microbiome to change from normal. Perhaps this signal comes from the vagus nerve, but what triggered the microbiome to change? And what keeps it from returning to normal? If severing the Vagus nerve in mice in an MS state causes their microbiome to return to normal, then it’s signals from the vagus nerve that cause the microbiome disruption, therefore “what is causing those signals?” is the real question. (A reactivated virus perhaps).
Anon, what’s interesting is that my ME/CFS was caused by 2 years of low level chronic carbon monoxide poisoning. I developed a wicked case of SIBO during that time. Treating the SIBO and sticking to the Specific Carbohydrate Diet has been a big piece of getting my quality of life back. Many other chronic carbon monoxide poisoning victims are also dealing with debilitating fatigue and gut issues. I knew how the hypoxia caused the fatigue and damages mito, but how does it mess up the gut. I recently found the explanation.
https://www.semanticscholar.org/paper/The-microbiome-and-gut-homeostasis-Lee-Tsolis/
I think that the microbiome has much to do with this disease but weather it is a symptom or the cause is difficult to tease out. I am researching peptides particularly BPC-157 which I am going to give a try to see if this helps, along with probiotics.
Simon, I’m taking the peptide Thymosin Alpha-1 as a nasal spray and it’s helping me. Where are you buying BPC-157? The peptides seem to be pretty spendy.
Back to the calming info, I found meditation to be really challenging until I discovered The Tapping Solution. The combination of tapping with meditating is so much easier for me to do. The racing thoughts just get obliterated. There’s an online app available for about $90, but there is a 2-wk trial for free. (I am in no way affiliated with this app or its creator). I just highly recommend it if you (like me) would like to meditate more but find it difficult to do.
Microglial activation has been implicated in all kinds of fatigues and MS fatigue is just the latest addition. Concussion fatigue, for example, is caused by microglial cells activated to repair the concussion damage. Age related fatigue is similarly attributed to microglial activation. It is also implicated in cancer fatigue as chemotherapy, as well as cancer itself, had been reported to activate microglial cells.
Myelin proteins become neuro-antigens when myelin melts and the lipids, protein and oligodendrocyte wrapping membranes all fall down.
Acute demyelination can be vast. From simple exam I am convinced inflamed myelin melting through congealed lymph around foramen magnum is the fuel that drives ME and OA instability.
Spike protein polymerizes with everything – so an auto-antibody to a spike- myelin protein polymer is likely. Peripheral molecules and WBC getting through the BBB can take time if the brainstem fenestrations are glued shut.
As a very long term PWC, progressive, I occasionally return to shallow waters in hope of finding a simple explanation for my MECFS symptoms which I realize are in tandem with fellow PWCs. IMO, for such a large number of us to have similar symptoms the etiology should lie in a simple cause rather than some esoteric biological malfunction.
I, too recently revisited MS again and found symptoms that mirrored my own and those declared by other long term PWCs. Then I read your piece here also probing the association of the two similar symptom conditions.
Personally, I can NOT see how these two malaises are NOT a close match. Has any research within the Chronic Fatigue Syndrome milieu actually studied the nerves
within our population of diagnosed PWCs? If some X-% of them are demyelated
then that seems a strong enough case to warrant an MS moniker and consequently
justifies treatment under the MS umbrella.