Few studies ten years ago considered the gut and its flora in the context of chronic disease. Now microbiome studies are popping up in just about every disease. The “gut-brain” axis is a real thing. The bacteria in the gut appear to be able to affect brain functioning in a number of ways.
- Gut bacteria produces substances that tweak the vagus nerve.
- Animal studies suggest that gut bacteria is able to affect the permeability of the blood-brain barrier.
- If gut bacteria cross the stomach lining and get into the blood, they may be able to cross into the brain and wreak havoc there.
- Gut bacteria produce metabolites that trigger enteroendocrine cells (EECs) in the gut to produce molecules which reach the central nervous system.
- Gut bacteria also interact with the enterochromaffin cells which produce 95% of the body’s serotonin.
Somehow no one has examined the gut bacteria in fibromyalgia until now. That’s a head-scratcher give that gut pain is common, the rate of both irritable bowel syndrome in FM, and leaky gut syndrome – both of which may be associated with altered gut flora – appear to be increased.
Plus, several metabolomic studies – including one published this year – pointed arrows straight at the gut. It was remarkable to see gut (and energy) metabolites – not metabolites associated with the central nervous system – pop up so significantly in these broad metabolite surveys.
It’s possible that the central nervous sensitization paradigm is simply eclipsing interest in other areas. If so, it’s a shame; the FM first gut microbiome study – coming out of Montreal, Canada – was a good one. Not only were the results interesting but the fact that they dovetailed in some cases with chronic fatigue syndrome results was encouraging. Hopefully this study will inspire others.
The Study
Researchers from McGill University and University of Montreal took the prize – they completed the first fibromyalgia gut microbiome study ever. (By DarkFireTaker – Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=41633779)
In this Canadian study, the fecal matter of seventy-seven “meticulously” assessed FM patients and 79 healthy controls – all age, sex and gender matched – was compared.
Broadly speaking, the overall structure and diversity of the FM patients’ gut populations were similar to those of the healthy controls. When the researchers dug down, though, differences emerged.
Significantly altered levels of nineteen bacterial species in the FM patients were enough for a “machine-learning” tool to be able to accurately diagnose most of the FM patients.
The fact that levels of several of the bacterial species were statistically significantly associated with a wide variety of symptoms such as pain intensity, pain distribution, fatigue, sleep disturbances and cognitive problems suggested that these bacteria could indeed be contributing to some of the major symptoms found in FM.
It was intriguing to see reduced levels of the butyrate producing bacteria Faecalibacterium prausnitzii in both this study and an ME/CFS one. This odd bacteria – the sole species in its genus – does not produce spores, moves around very little, but is one of the most common bacteria in our guts. Through its fermentation of dietary fiber it produces butyrate and other short-chain fatty acids. Low levels of F. prausnitzii have been associated with Crohn’s disease, asthma, depression and now ME/CFS and fibromyalgia.
A Lactobacillus bacteria
Given the large role this bacteria plays in the gut and its effect on three potentially important areas in these diseases – reducing pain, reducing inflammation, and enhancing the intestinal barrier – it must be rising to the top of the list of potential bacteria to enhance in these diseases. F. prausnitzii and other gut commensals that metabolize dietary fibers are being introduced in a number of diseases in an attempt to tamp down the inflammation associated with autoimmunity. A blog on this interesting bacteria will be coming up.
Displaying a consistent inconsistency, the FM patients also exhibited higher levels of other butyrate producing bacteria. An analysis of the short chain fatty acids these bacteria produce suggested that the fatty acid levels of FM patients were indeed skewed: butyric acid levels were higher while levels of propionic acid were reduced and isobutyric acid levels skewed lower.
Fibromyalgia also bucked a trend when researchers found reduced levels of several inflammatory bacteria (Bacteroides uniformis, H. parainfluenza, P. copri and others) that have been associated with other rheumatological diseases such as osteo and rheumatoid arthritis. (Neither fibromyalgia nor chronic fatigue syndrome (ME/CFS) have displayed the kind of inflammatory profiles seen in rheumatological and other inflammatory disorders.)
The authors were careful to point out that their findings do not at all prove causality: i.e. it’s not clear that the altered bacteria found in FM is actually causing the increased pain, fatigue, etc. They could, for instance, be an outcome – a side effect if you will – of whatever is really causing the pain. This study, though, provides a good beginning point.
Chronic Fatigue Syndrome (ME/CFS)
In contrast to the FM study, the Giloteaux/Hanson study found reduced gut flora diversity in ME/CFS and a reduction in butyrate producing bacteria. Like the FM study, it was able to use machine-learning to accurately diagnose ME/CFS patients. It also provided evidence validating the possibility that increased gut permeability that could spark inflammation is present – something that needs to be looked at in FM. Other studies have indicated that exercise – the bete noire of ME/CFS – increases gut permeability.
Two-way Street – the Central Nervous System, the Gut and Disease
In one way, the fibromyalgia finding wasn’t a surprise at all. Fibromyalgia is simply joining a club that, if not for its poor funding, it would have joined long ago. Altered bacterial populations have been found in irritable bowel syndrome, chronic fatigue syndrome, chronic pelvic pain, rheumatoid arthritis and other chronic pain disorders. Why not fibromyalgia?
How gut derived Idolepropionic acid impacts the brain. (from https://upload.wikimedia.org/wikipedia/commons/thumb/2/22/Microbiota-derived_3-Indolepropionic_acid.svg/705px-Microbiota-derived_3-Indolepropionic_acid.svg.png)
The findings in these diseases are taking place against a backdrop of research that is becoming increasingly tantalizing. One would never think, for instance, that a stroke – a disruption of blood flow that injures the brain – would affect the bacteria in the gut but a recent mice study found that stroke somehow resulted in increased levels of inflammatory bacteria in the gut.
Similarly, traumatic brain injury appears to result in increased intestinal permeability which then works to increases the inflammation in the brain. That finding could help explain why people with TBI have increased incidence of digestive problems. Dementia is another central nervous system condition which increasing evidence suggests the gut is in some way involved.
A remarkable 2017 study found that magnetic stimulation of the brain resulted healthier gut flora with more anti-inflammatory elements. These studies indicate the gut-brain axis goes both ways: problems in the gut impact the central nervous system and vice-versa. It’s as if a disease state has been put in place which is maintaining itself in different parts of the body. Injure the brain – and the gut is affected in a way which furthers the injury in the brain (!)
It’s possible that alterations to the gut flora are part and parcel of having a chronic disease. That would suggest that chronic diseases are probably best treated by hitting multiple systems, and that one way to fight back against brain issues, including neuroinflammation, may be to improve gut functioning.
The upside of all this research is our increasing understanding of the important role the gut plays in health. The downside is how far we still have to go to unravel the incredible complexity of the gut. We still haven’t identified all the species (let alone all the strains) found in the gut, and our understanding of how to effectively manipulate the gut microflora is poor. The findings are so enticing, though, that research dollars will surely continue to pour into this field and it’s likely to progress quickly.
- Next up – a focus on F. prausnitzii – the gut bacteria found in low levels in both ME/CFS and FM – and other gut commensals
Hi my name is mark I have fibromyalgia for about 10 year and yes I have alot of gut pain and also lower back .I just wish there wer alot more studies too help us
I think they are coming Mark. The Canadian researchers said they were continuing their research. Plus I think we will learn a lot of other diseases – including ME/CFS – keep an eye out for that research. They found a similar finding in this study and I imagine will find more similarities as time goes on.
One ME/CFS researcher – Unutmaz – is digging deep, deep into the gut. I wouldn’t be surprised if what he finds doesn’t apply to FM.
I’m hopeful that this research will bring us some treatment options soon. I’m currently going through something that completely dovetails into this. Linzess for gut problems completely flared my neuroinflammation, and even though I stopped it after a couple of days, I am miserable, and my doc suggested it was because of leaky gut. But the things I’ve used lately to treat leaky gut (have tried treating that and SIBO for years) have caused more GI problems. Searching for the right balance, and wish there were something more precise for all of us! BTW, a Genova gut study showed that I have low Butyrate, not surprisingly, and my doc gave me a butyrate supplement, which I have not tried yet. But I recently found some blood work from a decade ago, done by a neurologist who specialized in mitochondrial disorders, showing that I had elevated blood butyrate. Have no idea how that all fits into things!
Yes, we yearn for more specificity. Unfortunately we don’t have that yet but this gut field is getting bigger all the time, other diseases are pushing the technology and I think the future is bright. I just hope it comes more quickly than expected 🙂 🙂
There are some treatment avenues to pursue right now. There is a decent amount of info and books now on the GAPS diet – Gut and Psychology Syndrome. I was given colostrum powder for healing the gut lining. It would great to someday have bacterial strain specific supplementation that helps FM and CFS.
That being said, I would be rich if i got a dollar for every N.D. who has told me my symptoms are just “leaky gut” or “adrenal fatigue”! I truly don’t think its this simple, and none of my many, many attempts to heal these two phantom problems have worked.
Agreed. The future will surely see us as blundering around rather blindly – and occasionally hitting the target. Hopefully with the technological improvements that are occurring, a more precision medicine approach will be available sooner rather than later…
Hey, Tamesin — I tried that Linzess for chronic constipation and had the reverse happen. Magnesium cleared this up, but have to take it every day. I started with 100 mg supplement to find my balance (which is about 400 or 500 mg). My doc said it didn’t have to be a specific type of magnesium. You can also try the powder version Natural Calm by Natural Vitality. You might want to try a good brand of probiotic. My dr has be taking twice the usual dose after a bout of food poisoning. Good luck!
Magnesium is often deficient when muscles cramp, so taking Magnesium is sensible for most FM sufferers. Your doctor might not be aware that there is a difference between types of Magnesium taken orally or topically, applied to the skin. The food supplement Magnesium Oxide — sold by some irresponsible health food stores — is cheapest but not worth the money, not worth taking as it virtually cannot be metabolized by the body.
Magnesium Citrate, a chelated form, is more expensive but much more bio-available (prescribed by my chiropractor many years ago).
But probably better than either of these is also the most expensive: Magnesium Oil for applying to the skin — as sold eg by Enviromedica.com as “Ancient Minerals”, Zechstein Magnesium Cloride plus mineral traces. (This comes from a very ancient European sea.)
PS I meant Magnesium Chloride — typo above.
Great article, as always. For me, finding out about toxicity and toxic overload syndrome truly changed my life – and my health. Reducing my toxic body burden has been a great step forward as part of improving my gut health.
This article about toxic overload syndrome symptoms are very similar to those symptoms of fibromyalgia and CFS (and many other conditions…). Worth a read. https://feelgreatnow.co/toxic-overload-symptoms/
Thanks for passing that on Alyssa…(Keep an eye on Kyle’s story!)
How long Cort before we here from what this person took to get well & is this person still taking medicines vitamins minerals to feel well & what about being back to complete normal with no disease at all? That
Team in Montreal is close to where I lived in Montreal I wonder if Ron Davis knows all about their work & how it ties into SFPN CCI Stenosis TSC’s Chiari etc. also Montreal is not the best when trying to secure
Funding for this illness when Canada as a whole the Government thinks its all in ones head…I know very good top Researchers in Montreal personally they are really fed up with the system the way this disease
has been left to suffer even the Montreal Neuro for years was trying to get money for this illness without much success I know the Montreal General Hospital was doing Research at one point so was Hotel Dieu
Hospital prior to closing before they moved to the 2 new Mega Hospitals built one with McGill & other with the French Hospital under Universite de Montreal. A lot of people are sick with this illness in
Montreal & they also, go through Hell as well with certain Doctors or Emergency Teams… I recall one Ass Doctor at the old Hotel Dieu Hospital he used to assess people for the Quebec Government
disability he was known to cut off lots of them refusing disability he used to call Women great Actresses he was one mean SOB a Dr. Galipeau rotten to the Core
She communicated a year or so later and was still well. I imagine she is an exception but her story does suggest the gut flora can have a major effect on health.
But is the only way to significantly change your gut flora through FMT’s? Probiotics have done nothing for me unfortunately, they actually make my brain fog worse. I have celiac and IBS so this is interesting
There are prebiotics, fermented products plus, of course, there are dietary changes (FODMaps diet) plus treatments for SIBO (antibiotics, herbs) plus there’s the autonomic nervous system which plays a huge role in the gut.
I have POTS as well so my autonomic nervous system isn’t doing so great. But has anyone had their ME/CFS and fibromyalgia go into remission from changing their gut flora?
I know of people for whom dietary changes were key. Here’s one story of someone who did recover using probiotics – https://www.healthrising.org/blog/2016/01/07/probiotics-cure-my-chronic-fatigue-syndrome/ . My guess is, though, that recovery is usually going to take a multi-faceted approach which includes diet, gut, perhaps supplements and drugs as well as some mind/body work to keep the pro-inflammatory mediators down.
The GAPS Diet claims to restore gut lining integrity, and there are many good books on the diet stages you will follow. You basically eat nothing but bone broth for months. I think healing your gut lining, like detoxing, helps overall health improve, but I don’t believe its the root cause of FM CFS…Or maybe it is that simple and we all just need fecal transplants….:)
The problem with bone broth, as well as fermented foods, is that they’re high in histamines, which I, and others with mast cell issues, can’t tolerate. Rock & a hard place 🙁
Jessica–it is not true that in GAPS you eat nothing but bone broth for months. Not at all. I have been on GAPS for 5 months and after the second month I was on the Full GAPS diet. Please look deeper into this diet and protocol. It has not fixed my CFS/ME but it did solve some other related issues. I was a vegetarian for decades, lived in India for the better part of 15 years, had heavy overseas travel and work to Third World countries for a good chunk of my life. I was also very athletic. Suffice it to say that my old diet was definitely not providing me with what my body needed nutritionally despite my varied diet of beans/tofu/tempeh/dairy and a wide range of vegetables and rices/pulses.
The switch to meats and oils was at first difficult. I just could not imagine that I could do it or that it would help. For my FM docs sake, I just gave it a try. Within a month I actually had body heat and stable blood sugar for the first time in 5-6 years. And within a couple of months I could see that my digestion had greatly improved.
I would like for it to have been a miracle in 5 months. But for me it is not. I lived a Full life since I was 16…and am now 62. I was very healthy up until CFS struck. But…I am pretty sure that I gave way more energy out to the world than I took in by food or nutrients. India and its climate and pollution definitely took a huge toll on my slim but muscular body. And now I have to be patient and replenish my system the best way I know how. Five months of nutrient dense food can’t possibly make up for 40 years of eating less. Patience is my mantra right now.
This is by far the most difficult transit I have ever encountered in my life. Being homebound! Wow, really? Friends and family are in disbelief. And as we all know, so are most of the Docs we visit.
Homebound with my weak and sallow body is not ideal. I am grateful for Cort’s site so that I can see what this disease has done to others–that it is not just me. But being homebound and unable to watch movies or exercise or walk outside or make my own bed–No, this is not easy. Every day I start again with the patience mantra.
I am awaiting LDN in the mail later this week. I, like so many others, are looking for something, anything, that will help move me even 10% above my sagging activity/mobility quotient.
Would I recommend GAPS? Yes, I would. My body likes it. Things are easy to digest and though I eat a lot of food, it is probably about 30% of the quantity I was consuming as a vegetarian. It feels like it is a lot less work to digest than the food I was priorly consuming.
The diet is tough in one respect–I had totally forgotten how to cook beef, chicken, fish and I had never cooked pork. The learning curve was huge–and it is still not easy. Right now I have friends who weekly or twice a month bring a crockpot stew or chicken to my doorstep. I hope in another month or so I will be able to keep up with my own appetite.
I am happy to answer questions about the GAPS diet. It took me a couple weeks in the beginning to understand what to do and how to do it.
I am looking forward to the new research coming forth in hopes that all of us can get back to being our strong, vital, and societal contributors that we have been in the past.
Court, would you have a link or address where I could contact the researchers of this study please? As a Canadian, maybe I could get myself into a trial somewhere? Thank you!
Very interesting. After reading this, I found a study showing that golden kiwifruit extract can significantly increase f. praus. Might give this a try.
https://www.ncbi.nlm.nih.gov/pubmed/29152256
I think it was the Royal Victoria Hospital & parts of the Montreal General Hospital that merged with the English Mega Hospital above & Hotel Dieu went to the French Mega Hospital…I think we need to test all of us for the Alpha-Gal Meat Allergy
component plus the panels of all EDS types for crossovers & GSD’s panels Glycogen Storage Disease & see if we are Positives for HATS Hereditary Alpha Tryptasemia Syndrome I am waiting now to be tested for all & we need studies looking at Heart
ultrasounds, vein blockage, compressions with Eagle Syndrome too many now being diagnosed with numerous things from above & Fibro I still believe is EDS ME/CFS same illness different names used & diets & gut issues to work need proper
diagnosis things mentioned above…GSD by itself is complex to foods also so is Alpha Gal even HATS as well & hidden ingredients as bad triggers in the gut. I hope the Montreal work is not just hype I have seen some bad Research done in Montreal
that never panned out…The City is not a good place for CFS patients they are badly neglected there
Very interesting; but why is “gut permeability” always about unwanted substances getting into the bloodstream? I think substances leaking out into the interstitial spaces, will explain a LOT. It is now being established by mainstream biological research, that Eastern medicine has been right all along, interstitial fluids do “flow” – or are “squeezed” by movement – around the body. Plus, actual biochemistry that we hardly know anything about, is occurring in those spaces.
I have argued for years now that FM is all about the muscle fascia and its hydration or lack of it, and attendant stagnation, toxicity, and the formation of adhesions in it.
As I have continued to improve from my successful protocol, the very last areas of muscles to “release” have been the big, complex masses and attachment points in the pelvic area. Every time I achieve a new major “release” from yoga-type work and “fascia release” massage, and gain new mobility (eg waist bending in one or more directions), I get a pain flare-up down the quads and around the knees. I say the big releases of fascia further up have dislodged very old reservoirs of toxins that then seep downwards through the interstitial spaces.
I have hypothesized often about “vicious circles” and “virtuous circles” of effects in FM; the gut biome is probably part of this circle. It would be interesting to test some rare people like myself who have made major improvement; which FM indicators have changed for the better and which are still the same? Do I still have an underlying condition that I am merely suppressing with very strict long-term self-help? The important thing to me, is that massage therapists have been able to feel all along, the palpable masses of adhered tissue at the locations of the worst pain and tenderness, and these palpable masses have slowly diminished and what remains has become more and more responsive to hands-on therapy.
Almost everyone has some adhesions but in normal healthy people, a skilled massage therapist can release them immediately. People with FM are a body-wide mess of major adhesions, which do not respond to therapy, and which are mostly too painful to massage or press on anyway. Some healthy dancers and gymnasts, I am told, have absolutely no adhesions able to be found anywhere on their bodies. Studies should seriously look at pre-FM lifestyles and see if there are some that forestall FM in people who otherwise might have the genetic vulnerability. In hindsight, I believe that in my youth I was forestalling the FM I had a genetic pre-disposition to, because I played a lot of table tennis (almost daily) and did a lot of bouncing on the trampoline (neighboring friends had one). But as soon as I started work, spending days sitting, and rode a road-racing bicycle for my only exercise, I was in trouble.
@ Philip Hayward
Adhesions galore. Check. Gut involvement..for sure. I found active release to be the only therapy to help with adhesion. Yoga benefits as well..if I am careful.
2 symptoms I have..I would like to understand more:
1. Increased fibrin levels..which I address through Serrapeptase Enzymes. Could this be linked to the adhesions and “trigger finger” like issues in hands?
2. Lipomas. Many. Is this a product of leaky gut..the “leakage into interstitial space” you mentioned? Anything to be concerned about here?
Ideas and comments most appreciated.
Willow
Thanks for the interesting comment. I’ve never studied Fibrin; I don’t think it has ever been tested in me. I’ve had very little tests done for anything, the single-payer system in my country simply doesn’t do much for people with FM.
It’s interesting that you mention “lipoma”. I had one significant one diagnosed and removed because of where it was, on my spine. But to what extent does the medical profession diagnose “lipoma” in the case of muscle / fascia tissue that is inappropriately lumpy and tough? I never thought of this before, but many of the lumps I have had were “lipoma like”. One of the ways I describe this, is that it is as if the muscle, or part of it, is actually “tendon”, far too far away from where actual tendon is supposed to start!
Gradually, even these lumpiest spots have been yielding to hands-on massage and accupressure therapy. I have been six years now, on my journey of improvement. I would love it if someone else followed exactly the same path of improvement. Stay patient and committed, because these things are resolvable.
Yes! I know what you mean about Yoga, “but being careful”. I have been carefully “doing what I can” all along, starting with careful stretches in a spa pool. You can achieve more with the muscles warmed up and the body weight supported by water. Gradually, gradually, with everything I was doing, I gained more and more mobility. Now, six years on, I am almost completely confident and not reticent or reluctant about attempting positions and stretches. Early on, it was far too easy to injure myself. But now I have proved that it is possible to get “better” enough that that is no longer a problem.
Really, I am now beyond “making myself normally functional again”; now I am continuing my program to see how much “better than the average person” I might be able to get. When I first attempted Yoga-type classes (once I’d had some improvement) I was the class laggard. Now I am equal to the general average of people doing the classes, I don’t stand out as the guy who is unable to do things.
One milestone for me that was very emotional, was gaining the ability to break into a run and feel completely natural and poised and free to do it. Here’s how I describe the effect of FM to people. Sometimes when you are wearing certain types of clothing and it becomes wet, it “sticks” to you and inhibits your own movement. For example, you reach out your arm for something, but your garment is stuck to your arm and torso so all of a sudden you are “stuck” and unable to reach any further. I say this is what the fascia is doing to you, and the fascia is not just a layer on the surface; it is multiple layers in a web of complex directions. It is like a bad nightmare where you can’t run away from a threat because of invisible forces acting as a “drag” on your exertions.
Get rid of this “drag” and you are a new person! It is of far greater significance than improvement in cardio-vascular fitness! Feldenkrais lessons have also been a big help, training the muscles in correct deployment. This also makes movement “lower exertion for greater result”. But early on, if a muscle was stuck, it was stuck. Feldenkrais doesn’t unstick adhesions, but it does get a muscle operating properly again once you’re getting hydrated, de-toxed and released.
Thanks for your reply Philip.
I like your analogy of fibro feeling like wet clothes restricting mobility. It is so much like that for me as well sometimes.
I had a live blood cell analysis and thats where the fibrinogen was seen..like a web…slowing things down..restricting the movement of cells. Kind of seems like the micro version of your analogy.
I took serrapeptase enzymes and in 2 days I had energy..less brain fog and felt 75-80% better.
The lipomas were analyzed and I was told they were “nothing to worry about.”
Perhaps “fat deposits.”
They seem to increase in number as I age. I am not sure how to remove them other than surgically. Which is costly. Seems crazy to me…”fat deposits” as I was extremely active..boxing..martial Arts..many times a week. Now yoga is tough on me.
What protocol did you use for detox and release?
“Lipomas”?
Interesting description.
@Philip: Are you describing the same thing simultaneously feeling like a lipoma and a tendon on a wrong place or do you describe two separate things? I have a hard time imagining both descriptions applying to one such lump. Maybe its because I have luckily no clear experience with either.
@David and Philip: kind of reminds me of two things:
A) Recent medical trend is to not call all (excess) body fat bad but mainly excess belly fat. The reason is that fat stores many toxins and it’s locate near many critical organs. As long as the fat remains there, there is no problem. But when you loose weight these toxins are released from the disappearing fat and that is near these organs. That was the reason doctors gave.
B) Ecologists often talk about animals pilling up man made toxins like mercury and pesticides. Animals on the top of the food chain do pile up more as they eat animals that contain toxins and have greater “stores” of it then plant life. From time to time these ecologist mentioned these toxins to be mainly stored in the fat.
A) and B) seem to point to the following: either fat (tissue) seems to attract a wide variety of toxins and release few of it OR the body actively puts toxins it can’t immediately get rid of in fat deposits (or builds fat around deposits of toxins).
If the later would be true, maybe the body actively construct lipomas when it desires to stack away / encapsulate stuff that it considers toxic and cant really get rid of. I know someone who developed plenty of them rapidly when having a strange disease that kind of seems to poison him.
If true, it could also be part of the “ketogen flu” when somebody switches to a ketogenic diet. A ketogenic diet reduces body fat body wide. If some of it stores plenty of toxins then those toxins get released in a fairly short time.
Maybe, IF Philips lumps were (in part) lipomas then going to a ketogenic diet did help remove them non-surgically. Not that I advice such diet, outcome varies too much from person to person in order for me to do so.
It would also help explain why getting rid of these lumps in parts not targeted before introduced pain and flaring up in fascia “already treated” by Philip. That would further reduce the fat stored in those by more actively using that tissue and improving local blood flow, releasing the potential toxins stored in it.
In short: whatever these lumps are they may be (in part) constructed by the body at these places to contain local or not so local (moved to that place) toxins.
@ dejurgen
Thanks for your thoughtful analysis.
Re: “lipomas”
Yes..Itbspunds that mine may be different than Philips. He sescribed something sounding more like adhesions..knotting up and releasable.
Mine are more like fluid filled or fat filled sacs..that are quite rooted (I had 2 removed surgically). It makea awnae to me that body may have created rheae lipomas to store or partition off toxins.
Some are painful to touch. But with FMS..most things are painful.
I did lose alot of weight via stress 2 years ago..and didn’t notice any physical worsening of FMS symptoms..but noticed more psychological effects perhaps. Depression..OCD like stuff. It seems to point back to gut in some way perhaps. Gut spasms ..neck shoulders at times..cold weather worsens it…and when I experience “gut lock” as i call it…well constilation sets in. Could years of cycles of gut lock create the toxins?
Sidenote: I workednwith a Traditional Chinese Medicine Doctor/Naturopath and he was constantly treating what he called “liver heat” ..basically liver stress “attacking the gut” and another syndrome called “kidney yin deficiency.” Which he said was like the body’s radiator..or cooling system was depleted from stress etc….so with no coolant…and liver heating up (maybe from trying to process those toxins???) Alot of warmth and anxiety and fidgitiness set in. But yet the gut maintained its sensitivities and lock ups.
So I don’t know if the “leaky gut” starts the. chain…and the liver cant keep up..and fat metabolism…is compromised..or like you said…body may be trying to contain toxins it could process or eliminate.
Adding another piece to this is…I noticed recently some insulin resistance starting. And high estrogen. Testosterone was normal. So I went on indole 3 carbinole to knock the estrogen down..and chromium and berberine caps to help with the insulin issue. Fasting insulin count went from 103 to 50 in 5 weeks Target is -20.
Not sure how this all relates. Forgive my wanderings and grasping.
I am concerned about the lumps becoming harmful later..or the body pain and psychological stuff getting worse. Although I am determined to do my best and learn.
Hi Phil,
As a comment on a recent blog I worked further on the concept of lactate-as-a-fuel. It appears lactate is a valid fuel for many tissues and that lactate is transported via fascia (FM link) and CBF (ME link). Poor fascia may mean poor lactate / energy source distribution. If you wish I could search which blog it was.
More on topic, I do find “I think substances leaking out into the interstitial spaces, will explain a LOT” thought provoking.
I went from the first idea “something fibrous accumulating water” to “small debris like poorly digested proteins or fractured DNA resulting from the immune system attacking bacteria entering through the gut wall” to “these latter probably poorly bind water” to “but these might trigger NETosis if that were possible in the fascia”.
I further investigated the last idea but couldn’t find much when combining “fascia NETosis nets connective tissue” as a search term. Guessing there may be too few research on it, I chose to look for “fascia neutrophil” as NETosis in the fascia would at the very least need neutrophils to be there and that is a less new research topic.
I use Duckduckgo.com (all regions settings) as it doesn’t filter search results according to personalisation, so others can find what I find too.
link number 5 may sound familiar to you (for a different disease with a number of similarities to your case) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504280/:
“A deep-needle biopsy of the left thigh demonstrated a slightly fibrotic dermis, thickened fascia with fibrin deposition, a non-necrotizing vasculitis of the small blood vessels, and inflammatory findings consisting of macrophages, plasma cells, neutrophils and lymphocytes in the skin, perimysial connective tissue, perivascular area, and, to a …”
“His past medical history was relevant for recurrent Herpes Simplex infections, sinus infections (five to six times a year since age 40) with low serum immunoglobulin M levels (IgM), findings consistent with a diagnosis of Selective Immunoglobulin M Deficiency (sIgMD), chronic fatigue syndrome, depression, and steroid-induced hypertension, cataracts, and hypercholesterolemia. He was also diagnosed with eosinophilic gastritis”
=> Some fibrin, inflamed small blood vessels and inflammatory findings in the thickened thigh biopsy. That alone could help create those lumps.
=>But they also observed neutrophils, and where there are neutrophils I would expect another thing to be found: the debris I do believe that comes from undigested proteins and semi demolished (by the immune system) pathogens leaking through the gut and NETosis to clear the mess up.
=> While NETosis would be the (necessary) way to remove that debris with minimal permanent damage (on a large scale), having plenty of debris and NETosis to clean it up in the fascia would likely severely impact fluid (and more so of the bigger components like immune cells being present in the fascia fluid) movement creating additional problems.
I guess that “liberating” partly trapped of this DNA-similar type of debris at once may cause an inflammatory flare-up in other parts of the body, consistent with your experiences.
Please share your thoughts on this attempt.
I read a paper I was pointed to by someone helpful at Healthrising about NETosis.
IIRC part of the topic was that NET formation depends on a change in pH (or both value and change combined). Maybe that is in order for NETs to form at the right location in the bloodstream (arterial part versus venous part of the blood vessels).
Now it’s quite a big leap of faith, but exercise may just move through this range (of quick blood and /or fascia liquid pH shifts) and provide an additional trigger for NETs to be formed during exercise. That could happen to all exercising people, but for people having ME/FM that could be on top of already plenty issues including a trigger happy immune system and be sufficient an increase in combined immune activity and alteration of fluids flow to cause quick exhaustion and be part of the PEM cascade.
Dejurgen; thank you very much for your intensely hard-thinking analyses, you are researching much deeper than I am! Your hypothesis about NET could be the right one. You’ve included everything necessary to explain my observations, including the potential role of over-exertion. But I think it is possible that once the initial dysfunction is triggered, there is a cascade of other effects that are not themselves the original “cause”. The adhesion-causing toxins are probably “multiple” in origin, but who knows yet which one of them was the initial trigger?
The toxins that are the result of premature anaerobic exertion, were probably not the original cause, but are logically created once the initial dysfunctions you describe, are present. Because the energy system is rendered dysfunctional and exertion far too easily becomes “anaerobic”, when in a normal healthy person, it wouldn’t be.
So “recovering” like I have, has required attention to multiple factors; I’m not sure that treating the NET problem alone would be successful. But perhaps the low-carb diet helps with that, so that I’m successfully addressing more than one of the factors that create the malaise, increasing the chances of reversing the condition.
Hi Philip,
I believe NETosis is not the problem, but rather the way our immune problems may present itself.
The underlying problem would be more like hypothesized far too much DNA-like debris flooding the blood stream and or fascia.
I do not seek to block NETosis, but rather try to reduce the bodies need to resort to it. Just like I do not try to dampen the immune system, but rather to reduce the need for it to clean up threats (actually I do use a small dose of antiviral Isoprinosine/Imunovir as I got it early on and it just helps me; Isoprinosine also has some imuno-modulating properties).
I prefer NETosis over other strong immune responses as NETosis is superb at cleaning up problems with few permanent damage. Each type of immune activation has its own sets of advantages and disadvantages and learning more on them could help “reading” the particular response at work, how it affects disease and symptoms and hopefully how to lessen symptoms caused by it.
I now also (kind of) remember that the “immune training idea” did not come from Herpes type virusses but from certain commensal bacteria like the acne bacteria. But maybe it could be not too far off for these virusses either…
There is an increased amount of people with ME/FM that has some sort of connective tissue disorder.
Now collagen is a main protein of connective tissue.
“As the main component of connective tissue, it is the most abundant protein in mammals,[1] making 25% to 35% of the whole-body protein content. Collagen consists of amino acids wound together to form triple-helices of elongated fibrils.”
Now if a person were to have protein folding problems or even more specific collagen misfolding problems then NETosis would be highly increased in and around the fascia IMO.
Even without genetic protein misfolding problems, certain physical stressors like oxidative stress can increase protein misfolding rates.
Do we know anything about the current status of FMT trials for fibromyalgia and/or ME/CFS?
I know of the Comeback Study (Maureen Hanson?), but I’m not sure if it’s under way yet. There seems to be a lot of chatter about FMT but I haven’t heard much of anything about trials for fibromyalgia. Based on some of the gut findings and the fact that it appears generally safe, one would think this would be at the top of the list for prospective treatments.
I just know that one is slate to happen or is happening. My guess is the later since it’s been talked about for awhile.
I too had the thought, if prausnitizzi does have these good effects, how can I increase mine?
Found this little tidbit and thought I’d share; https://cfsremission.com/2017/04/29/increasing-faecalibacterium/
Apologies if this has been mentioned already since I don’t have time at the moment to read all the commentary closely.
Cort I have been working on the AhR and indoles for tryptophan metabolism for the last 6 months – F. prausnitzii is now high, but still missing and clostridia species. Most symptoms are gone, except for a feeling of hibernation and shutdown after moderate exercise or overdoing it – I think it’s because the missing clostridia species help to moderate dopamine epi/norepi interactions. There is nothing I can find in the literature which increases these species except breast milk or FMT with baby poo. I don’t think the human milk oligosaccharides will work for clostridia but might be worth trying.
Hi Monne Cat. Would you kindly give more details about what you did? Products/sources/process, etc.
Also, information to help gage your improvement – ME severity & symptoms, what were you able to do before & after.
THANKS!!
How many also in this study done in Montreal under new diagnostic criteria from 2010 do not have ME/CFS Fibro EDS they have all along misdiagnosed Marfan’s
Syndrome & countless are missed & the Heart exams & images are almost similar in ME/CFS Fibro EDS which makes any study now being false findings & missed even in
Major Depression or Parkinson’s, MS etc
Apparently Lady Gaga has just signed a big deal with Amazon. As someone with Fybromyaglia, I wonder if she’s made a donation towards research? I’m guessing she probably wouldn’t miss 5 million dollors.
Herein I see a problem! Which FM organizations would she donate to? I could be wrong but I don’t know of any that are funding any research! That’s an interesting situation given the huge potential FM donor pool.
For some reason ME/CFS orgs have been much, much more pro-active in advocacy and research despite the fact that so many fewer people have the disease.
She may not know who to donate to….
An old problem: Gut damage→pain→neurological→neuro-psychiatric
I would suggest investigating GI Enteropathies by anyone with GI and Fibromyalgia-like or CFS/ME-like symptoms that seem to be effected by diet and antibiotics. Enteropathies can cause GI centered with complex and widespread pain and neurological symptoms. They are generally caused by damage to the intestines known as villous atrophy or duodenitis. The damage is typically done by an aberrant immune response that attacks the intestinal lining. It can be caused by a response due to a foods (Gluten, cow’s milk and soy proteins), virus’s (norovirus, rotavirus, adenovirus, and astrovirus), a parasite (giardia, worms, strongyloidasis, pinworms, trichinosis), autoimmune, bacteria(H. pylori, tropheryma whipplei, toxigenic gram negative gammaproteobacteria such as Klebsiella,V. cholerae, Escherichia coli), Common Variable Immune deficiency or HIV, and medications (NSAIDs and ARBs such as Olmesartan). The combination of a T Cell plus IgA immune response plus increased permeability can lead widespread inflammation, neuro-inflammation and pain through the body. The activated T Cells and IgA can then circulate and target smooth muscle tissue throughout the body.
Here is a list by frequency of possible causes:
https://els-jbs-prod-cdn.literatumonline.com/cms/attachment/38d7cad6-b3f9-4a76-86f8-ae7a59dba4b3/gr1.jpg
Here is a diagnosis diagram:
https://els-jbs-prod-cdn.literatumonline.com/cms/attachment/480b0b6d-36d8-4557-a851-f1452eacabf7/gr2.jpg
The best known enteropathy is caused by the immune response to Gluten which when severe is known as Celiac Disease. The damage can be seen in the small intestines as duodenum villous atrophy or duodenitis. Celiac Disease involves both a complex body-wide T Cell and antibody based immune response. Celiac Disease is typically diagnosed by testing for HLA DQ-2 or DQ-8 genotype, anti-tTG antibodies, anti-endomysial antibodies. The damage can sometimes detected and monitored for severity with the F-Actin IgA Antibody test ( not IgG). In 5-10% of cases, it can be seronegative showing no antibodies. This can lead to missing true Gluten/Celiac Disease. The acid-test is an endoscopy which takes a biopsy to look for villous atrophy or duodenitis in the small intestines duodenum. But the discovery of villous atrophy or duodenitis can be due to a variety of other causes rarely investigated or even understood by many GI doctors. The other causes that can mimic Celiac in many ways or produce their own different symptoms. They are listed by frequency in the table. Celiac is easily treated by a rigorous lifetime Gluten free diet. If that diet doesn’t help than the diagnosis must review all possible causes. Here are 2 excellent reviews:
https://www.mayoclinicproceedings.org/article/S0025-6196(17)30892-3/fulltext
https://www.archivesofpathology.org/doi/pdf/10.5858/arpa.2016-0608-RA
Due to the intestinal lining damage, increased permeability and GI/body-wide immune responses, most of these follow similar patterns of symptom changes due to diet and anything that alters the gut microbiome such as anti-microbials. Altering the microbiome alters the bacterial mix, metabolites, toxins, and a wide variety of antigens. Tropical Sprue is a key example that is not understood and has been called “a riddle wrapped in a mystery inside an enigma”. It is often associated with gut microbiomes that include the toxigenic Gammaproteobacteria such as klebsiella, V. cholerae, Escherichia coli and others. It is suspected that the toxins produced by these bacteria both aggravate the damage and stimulate a wide immune system response in addition to other immune responses. I hope you can see why this is an area to have investigated if your Fibromyalgia or CFS/ME symptoms include some IBS-like symptoms and vary in unpredictable ways with foods such as sugars and carbohydrates and antibiotics. This is a strong clue that varying your gut microbiome and all it involves is effecting an enteropathy immune reaction that goes beyond your gut.
Thanks!
“This odd bacteria – the sole species in its genus – does not reproduce, moves around very little, but is one of the most common bacteria in our guts.”
I guess it has to reproduce somehow :-).
But the “moves around very little” is an interesting one. Even more so combined with likely limited / slow reproduction if that were the case.
A “classic” reaction to acute food poisoning is for the body to create diarrhea. That flushes the poisoned food ASAP out of the body. Likely there will be an increased activity of immune cells in the gut too, but getting the food ASAP out of the body is an important part of the reaction.
If this Faecalibacterium prausnitzii bacteria is to stick in the gut with its low motility and maybe low reproduction, then being inside the faeces will get it removed all to quickly. So it probably is good at sticking to the gut wall.
Sticking to the gut wall is a good strategy as long as there are only sporadic acute infections and when the immune system in the gut is moderately active.
When infection is chronic or the immune system is overactive however the situation changes.
With chronic gut infection, the gut can no longer mainly rely on creating diarrhea to flush out the pathogens. Note: another strategy IMO is creating a dry gut so that food with bacteria has less intense contact with the gut wall and so fewer bad bacteria will stay in the gut too. In my case I have a continuously cycling alteration between both diarrhea and constipation.
Still it matters few. With chronic infection the immune system will have to use plenty of immune cells near the gut wall for a very long time. Bacteria that (must) stick to the gut wall will be the first to fall victim to this increased immune activation in the gut.
That in turn may cause two things:
1) Faecalibacterium prausnitzii being nearly eradicated from the gut
2) The long time immune activation in the gut creating gut damage leading to leakage of pathogens through the gut wall… …creating a need to keep the immune system setting high in the gut prolonging problem 1)
It’s been for quite a time I suspect that an overactive immune system somehow prevents / blocks the gut flora to go back to normal. Since taking away most of the plenty foods I am intolerant too my health improves but even after a full year gut issues only reduced, not resolved. Taking approaches of trying to reduce gut bacterial counts and replacing by other “good” bacteria failed.
It seems that this may point to a way on how a single strong hit-and-run immune attack like an infection can cause gut wall damage and reduce hard to replace and regrow gut bacteria like non-motile Faecalibacterium prausnitzii to cause a near-permanent and very hard to reverse alteration of the gut environment setting the stage for chronic ME/FM.
If so, it’ll be probably just one switch that flips in a longer cascade but it may be an important step in both the initial cascade as in attempt to reverse the process.
OK! it reproduces by binary fission. How its different is that it does not produce spores. It turns out that most pathogenic bacteria produce spores which can tolerate harsh conditions and cause problems. This bacteria does not do that.
@dejurgen
@Tom
Very interesting posts. I have had gut issues for many years…probably most of my life. I thought it was just where I carried stress and perhaps food sensitivities. But 4 years ago I experienced a very stressful period and developed tinnitus and fibromylagia symptoms. There was also a norovirus or something as well. I had never experienced a virus like that before. I am not sure if it was virus or stress or a combination but I came out of that period with major OCD like anxiety symptoms and FMS. I have been trying to recover since. So I do hear what Tom describes as:
“An old problem: Gut damage→pain→neurological→neuro-psychiatric”
The thing is..I am not sure what to do about it. Various therapies, both herbal and psychotherapeutic were not beneficial. Active release helps the stifness and body pains and stiffness somewhat. I tried many pharmaceuticals..chinese medicine and some naturopathic suggestions. No satisfactory results yet.
Can one replace the Faecalibacterium prausnitzii bacterria somehow?
How does the psychiatric piece show up “all of a sudden?”
“How does the psychiatric piece show up “all of a sudden?””
The underlying gut problems start to resemble a gut leaky enough to say we are in a state similar to a (not even that) mild but chronic sepsis.
Now true acute sepsis is like THE definition of an acute medical emergency and a major stressor to the body.
It requires so much energy of the body to clean it up that very high increases of stress hormones like adrenaline are a reasonable response of the body. Being flooded by them should impact the psyche at least a bit :-).
To put it in perspective: after slowly reducing many foods I later appeared intolerant too I started to search what I could tolerate well. When eating two really small apples and nothing with it as breakfast I learned I am intolerant to the fructose in the apples. But the important part here: half a day to full a day later it felt like I suddenly got “bathed” in a toxic mix of chemicals taking over my body.
The effect transformed how I felt in a time frame from half an hour to two hours. Pain was massively flaring up high throughout my entire body. Energy sank quick an deep. AND it felt like I got an instant depression. My mood nosedived from good to really dark in such very short time. I blame the chemicals related to the strong immune response.
I’m happy someoney finally got around to doing a study about gut flora and the link to fibro and ME/CFS. I have been telling people this for 20 years. Healing the gut was essential to my recovery.
This might explain why the Tricyclic Anti Depressant Anafranil has a miraculous effect on my gut, while any other AD makes me feel worse. Serotonin controls gut motility and mine was practically non existent by the time I went on this drug. Had no normal poos for 5 years prior to this. Have been taking for 29 years and will need it till the day I die. My dose is 75mg no more and no less. I need other things too but this is the backbone of my recovery. Have been off it for various reasons and the nightmare always returns. It’s the classic drug used to treat OCD which I also have, but fatigue is not part of OCD. Doctor started me on imipramine and built the dose up gradually, I have practically no side effects. Interesting part is imimprane doesn’t help. It must be Chlomipramine Hydrochloride. I also take Modafinil but that has no effect on gut, only brain.
@ Milton
Thanks for sharing. I too wondered about neurotransmitter disturbances due to gut issues. I was prescribed Clomipramine for OCD like “mental stickiness” but was hesistant to take medicine due to previous experiences with SSRI’s and SNRI’s that didnt feel good.
Has Clomipramine helped your OCD symptoms? Any improvement with pain?
I’m responding here, to your question further up the thread, where it is getting a bit crowded and skinny.
I slowly improved from my FM by doing all the following:
Careful pacing – plenty of low intensity exercise, never high intensity and never “sedentary” either – THIS IS THE MOST IMPORTANT THING – “EVERYTHING ELSE” DIDN’T WORK UNTIL I GOT THIS RIGHT.
Low-carb diet
Hair Tissue Mineral Analysis – and following the recommendations of the specialist involved, re toxin elimination and boosting deficient elements
Magnesium supplementation needed to be high – I took several different forms of magnesium and also rubbed in spray-on magnesium “oil” topically, especially in the sorest places
Gradual experimentation with stretching, in a spa pool, almost daily
Hands-on treatment from a guru in fascia – I was lucky to find someone who agreed with my hypothesis and had the skill and the patience to just do what he could each time I visited. Gradually more and more releasing became possible.
Once I’d achieved some releasing and mobility, I started doing Feldenkrais therapy via a practitioner and also group sessions. I think this becomes part of the beneficial circle of effects, but starting it too soon would be a waste of time and money.
I scrolled the original paper down to the conclusion section and read this; First, there are as yet no US Food and Drug Administration–approved treatments. Second, although various biological measurements distinguish patients with ME/CFS from healthy controls, none yet have demonstrated the high sensitivity and specificity required for a good diagnostic test.
It seems the second should be the first and the first the second. Basically, it says nothing has happened so far. What is that we get so excited about?
An Australian study published just this week might be of some interest here:
http://www.sciencedaily.com/releases/2019/07/190710103203.htm
The focus was on pre-eclampsia but the mechanism described involves another of the SCFAs produced in the gut, acetate, tweaking the thymus gland and it, which might well have broader implications. For a start, it might explain the allergy epidemic as due to the low-fiber, modern diet. Similarly, low acetate might contribute to auto-immune conditions.
“Together, these results showed that promoting specific metabolic products of gut bacteria during pregnancy might be an effective way to maintain a healthy pregnancy and to prevent allergies and autoimmune conditions later in life.”
I don’t know that there is an effect on the adult thymus, but I see that acetate features in MacGregor’s hypothesis, too.
In my case,FM symptoms triggered after appendix surgery in 2012(I was having acute pain in the stomach but endoscopy did not show any appendocitis inflammation when done multiple times .Still dr removed it). Appendix is not vestigial organ now and having some immune function.Did not take proper rest after surgery . SIBO type /IBS type symptoms triggered in the beginning followed by FM symptoms with headaches .I think Daniel Dantini anti viral /Pridgen anriviral protocols may still be applicable .
https://www.ncbi.nlm.nih.gov/m/pubmed/29600197/
There may be different factors affecting gut dysbiosys and its metabolic functions e.g.glycophosphate.
Currently undergoing 15 day Panchkarma(Five actions) therapy which is 2000 old ancient Ayureveda wellness program .One of the action e.g.Basti out of five actions focuses on removing endotoxins and improving gut health and ENS and increasing SCFAs productioms by admininistering different herbal oils and botanicals which is different from western SCFA enema.my faltugiri is gone. There is 60 percent improvement in other symptoms in just 4 days after starting treatment.
Another Woman today who has ME/CFS got her results last night is now also diagnosed with GSD type 11 so I wonder how these Gut findings come together if
everyone has different type of GSD all along not diagnosed? Some types require high Carb diets while other types are high Proteins? I think ME/CFS Fibro EDS or whatever
you wanna call this illness is more complicated than HIV/Aids it’s mind boggling…