(Ken Lassesen has recovered three times from chronic fatigue syndrome (ME/CFS). In his gut series on ME/CFS/FM he provides his personal prescription for better health through gut flora manipulation. Please note that Ken is a patient, not a doctor; these blogs are for informational purposes only. Please consult with your physician before making changes to your treatment regimen. )
Fertile Flora: The Gut Microbiome and the Infection Connection in Chronic Fatigue Syndrome and Fibromyalgia
Before we look at correcting the microbiome, we should understand better what we are striving to do and why.
Microbiome is the fancy new name for the gut and other bacterial systems that keeps us alive. All microbiomes are not the same — in fact, the microbiome you have is connected strongly with your DNA and is actually more unique than your DNA. A recent study of identical twins found that they can be told apart by their microbiome and not by their DNA.
You have around 100 trillion bacteria according to a recent New York Times article which states:
Our resident microbes also appear to play a critical role in training and modulating our immune system, helping it to accurately distinguish between friend and foe and not go nuts on, well, nuts and all sorts of other potential allergens. Some researchers believe that the alarming increase in autoimmune diseases in the West may owe to a disruption in the ancient relationship between our bodies and their “old friends” — the microbial symbionts with whom we co-evolved.
Microbiome Under Attack?
Modern times have not been good for our gut flora. Our modern high carbohydrate and fat diets have been shown to negatively affect the gut microbiome but for increasing numbers of us the negative impact to our gut flora began long before junior had his first french fries. Research indicates mothers actually pass important parts of their microbiome to their children as they move through the birth canal. Some researchers believe the higher rates of C-sections in the modern era maybe inadvertently contributing to the higher rates of allergy, asthma and autoimmune problems present.
Frequent antibiotic use may have snuffed out some good gut flora in many of us. Nor do we eat the array of probiotic saturated fermented foods our ancestors did. Given all that it’s no surprise that the diversity of our gut flora compares poorly with those living in more traditional societies with their healthier, more varied diets and reduced C-section and antibiotic use rates.
Micro in Name Only: Little Bugs With Big Impact
There is already abundant evidence that microflora can have system-wide effects and influence immune responses, brain development and behaviour (Williams, Hornig and Lipkin et. al).
Researchers are still figuring out how important gut flora is to our health but studies suggest the state of our gut can impact many areas, some of which are listed below:
- inflammatory gastrointestinal disease – reduced levels of a helpful bacteria appear to set the stage for Crohn’s disease
- cognition – specific bacterial families are associated with poor cognition and inflammation
- obesity – certain bacteria that metabolize food more completely may increase the risk of obesity/weight) B12 levels (Lactobacillus Reuteri produces most of it)
- autism – people with autism appear to have a unique gastrointestinal flora that has less variety than healthy individuals.
Autism provides an intriguing example of a dysfunctional gut (increased intestinal permeability, aberrant immune profiles, etc.) possibly contributing to severe cognitive and emotional dysfunction. Hornig and Lipkin’s Center for Infection and Immunity recently published a study suggesting reduced levels of carbohydrate digesting enzymes may lead to high carbohydrate levels that foster the growth of unhealthy bacteria. Indeed, RNA sequencing indicated an abnormal gut flora was present (decreased levels of Bacteroidetes, increased Firmicute/Bacteroidete ratio, Firmicutes and Proteobacteria, and increased Betaproteobacteria.)
A CFIDS Association of America pilot study recently found greatly increased ratios of Firmicute/Bacteriodetes bacteria before and after exercise in ME/CFS. People with ME/CFS also may have deficits in the bacteria that produce B-vitamins in our guts.) These researchers believe changes like these could affect immune functioning, brain development and behaviour.
The Infection Connection
It turns out that most infections do temporarily change the microbiome which usually reverts to normal after the infection has passed. In approximately 4-8% of cases, though, this fails to happen and the microbiome remains in a new stable state.
That percentage is pretty close to the percentage of people who come down with a CFS-like state after flu-like infections. Researchers have examined immune, autonomic, endocrine functioning in people with ME:/CFS at the start of infection and afterwards with marginal success. Thus far, immune upregulation and increased symptoms during the early course of an infection and autonomic variables later on are the only unique factors found in people with infections who come down with ME/CFS.
No one yet, however, has examined the most immune-rich substrate of all – the gut. I propose that an infection induced change of gut microflora – which do not revert to normal – plays a key role in chronic fatigue syndrome.
Your Microbiome is Unique to you — and So May Be Your ME/CFS/FM
If my hypothesis on the cause of ME/CFS/FM is correct (a stable dysfunction of your microbiome) then every patient will have a different variation of their unique microbiome! This means that your symptoms will be slightly different because your dysfunctional bacteria are slightly different. This actually goes one step further, the signalling chemicals from these bacteria interact uniquely with your DNA.
Getting a good idea of your gut composition, however, is difficult. Unfortunately currently available medical tests only characterize a small percentage of the species in our gut. Tests done at academic centres (not available at commercial labs) using PCR and DNA fragments are more accurate. Furthermore, many species (~ 80%) cannot be kept alive outside of the body which makes study very difficult.
A good review is at Aging of the Human Metaorganism: the Microbial Counterpart from which the diagram below comes from.
Altering Gut Flora: More Art Than Science
That means there’s more art to changing the gut flora than science.
On the plus side, it appears very possible – by effectively declaring war against the offending bacteria – and then aggressively repopulating it with good ones, to alter the gut flora. The disruption is not easy — before the arrival of antibiotics- a reset of the gut flora often began by inducing a gut infection (often cholera) to clear the slate, so to speak. Asking a MD to infect you with cholera to treat CFS today , of course, would be met with complete disbelief ; at one time, it was conventional medical practice and was reportedly successful. (Then again who would have thought we’d be talking about faecal transplants or using worms to alter gut flora….)
To me, any change is better than resignation to the current state of health in CFS. The key items are:
- Killing off bad species (may have collateral damage on the good species) – antibiotics, herbs, spices
- Feeding the good species (so they start to dominate) – prebiotics, often FOS, but there are other things
- Disruption of the new stability (so the old ones have a fighting chance)
- Importing good species (a.k.a. probiotics of the appropriate type, fermented foods, raw milk and faecal transplants)
- Starving the bad species (so there are less of them) – no gluten and no sugar diets are likely doing this
I believe the following approaches have the right general approach but may lack the fine-tuning needed for ME/CFS and other disorders. Early reports suggest that ME/CFS patients, for instance, may have a major drop in all E.Coli species but in Crohn’s Disease over 95% of the invasive species are E.Coli. With one, you want to encourage (healthy) E.Coli; with the other, you want to kill off (unhealthy) E.Coli — one treatment plan does not suit all conditions.
These approaches below are correct, I believe, that we should attempt to enhance our gut flora — but they have not evolved enough to address specific gut dysfunctions:
If you are doing any of the above, I suggest that you keep doing them but consider adding a few modifications which I will be suggesting in my following posts that are specific to the microbiome shift that may be occurring in CFS (which is likely similar to that seen with IBS).
I have yet to see any reports of the above consistently resulting in remission of CFS but I have seen reports of symptoms reduction. I believe they are likely part of the solution but are insufficient in themselves.
In his future posts, Ken will share his current understanding and experience in being an anarchist against this dysfunctional microbiome.
I haven’t spoken about poo in a while, have I? So, here’s a new use for poo…
WHAT? you say – there is only one use for poo and that’s to go down a toilet. WRONG!
Faecal Microbiota transplantation has been viewed by many doctors as the crack-pot end of medicine but a recent study has suggested it might have a use.
What I’m talking about is a healthy person, with no nasty infections, donating their poo to have it mushed up with saline and then inserted via a tube into the intestine of the recipient. The idea is that medications like antibiotics kill off the natural bacteria in our bowels and that the usual probiotics containing lactobacillus may not replace the full range of natural organisms we need for health.
To explain the process simply, stool is put in a blender with saline (salt water), and poured into a syringe. The sick patient is then given the freshly homogenised human stool via a colonoscopy, which is done through the rectum.
The transplants are currently used to treat gut bacterial conditions such as colitis, Irritable Bowel Syndrome and Clostridium difficile, or C. diff – an infection which causes diarrhoea so severe that it kills thousands of people every year.
Tests are also being done in Europe to look at what else FMT can be used for – it is thought to be effective in treating metabolic issues, obesity, type 2 diabetes, and neurological conditions including Multiple Sclerosis and Parkinsons.
“Contrary to popular belief, stool has no waste in it – it’s a mass of good bacteria,” says Professor Borody, director of the Centre for Digestive Diseases , who does one to six transplants a week in his Five Dock clinic.
“The incoming bacteria are capable of killing bad bacteria and recolonising your gut, restoring your body’s balance and leading to a resolution of your symptoms.”
While it might sound gross, the results speak for themselves. Prof Borody has had people flying in from as far afield as Paris to undergo stool transplants in his surgery.
Many of his patients are C. diff sufferers who have been plagued with recurrent diarrhoea for years, but are cured within days.
So if FMT is so successful, why isn’t it more widely available?
“Some people just can’t get past the ick factor,” says Prof Borody. “It’s similar to any new theory or practice when it’s introduced – is very hard to get old dogs to learn new tricks. Little interest has been shown within the pharmaceutical industry. Young doctors are very much on board with FMT, it’s the old farts who are holding us back.”
Some enterprising individuals have taken up doing the job of doing it on their own by recruiting stool from their spouse or family. Some have had surprisingly good results as far as combating Crohn’s or Irritable Bowel Syndrome symptoms (but all the links I found in regards to this had been deleted – so, perhaps you might not want to try this one alone.)
According to a new study in Clinical and Experimental Rheumatology, monosodium glutamate (MSG) in food may exacerbate our symptoms.
It was only a small study of 37 people: it included women with FM and IBS. Participants first avoided MSG and other excitotoxins (see below,) such as aspartame. Thirty one of the participants said that their symptom load was reduced by more than 30%.
Next, participants were given either orange juice with added MSG or plain juice (as a placebo,) three days a week, for two weeks. Those getting the MSG had a significant return of symptoms when compared to those who didn’t.
MSG also appeared to decrease quality of life when it came to IBS symptoms, and symptoms such as watery stools and abdominal bloating were higher in the MSG group.
Researchers recommend further exploration of what could be a relatively simple and low-cost, non-drug method of alleviating symptoms.
It can be tough to avoid excitotoxins in your diet. Aspartame is an artificial sweetener used in a wealth of products. It goes by the brand names Equal, NutraSweet, AminoSweet, etc. but should always be listed as aspartame in the ingredients list. Check your ‘diet’ products closely.
MSG is harder to identify and avoid, as it lurks in dozens of ingredients. The organization Truth in Labelling has a list of ingredients that do or may contain MSG: List of Ingredients Containing MSG.
- Aspartame: the Controversy! (outoftheboxremedies.net)
- Aspartame Can Kill You (healthupdates4u.wordpress.com)
- ASPARTAME…What Is It and Is It Good For You???? (coalitionofpositiveenergy.com)
Am I the only one who talks about poo?
One of our favourite (NOT!) symptoms of FM is Irritable Bowel Syndrome (IBS). New research has shown that IBS may be tied to abnormal brainstem function. UCLA researchers used functional MRI to monitor women’s brainstems while using a balloon-type device to cause rectal distention. Before distention, they’d give the women a visual cue.
The women in the control group had a significant drop in brain activity after the visual cue, which the researchers say is a “down-regulation of pain-signalling systems.” You know how you prepare yourself for an injection – this is how your body prepares itself for pain it knows is coming and also knows isn’t dangerous.
However, the brains of women with IBS didn’t have the same activity drop-off, which researchers say shows they can’t stave off expected pain like most people can. The IBS group also had stronger brain reactions during distention.
It was concluded that the brains of some pain patients react differently to pain than ‘normal’ people, though (once again) they say more research needs to be done. “If we can identify receptors and genes associated with these abnormal brain responses, we should improve both identification of predisposed patients and development of effective remedies,” says Emeran A. Mayer, M.D., who worked on the study.
Researchers say their findings could also help uncover underlying causes and possible treatments for fibromyalgia and other chronic pain conditions.
- Obsessed with Poo! (fibromodem.com)
- Understanding and Managing IBS Pain (everydayhealth.com)
- And It All Comes Back to the Poo! (fibromodem.com)
After another uncomfortable visit to the toilet, I decided to Google ‘Focal Nodular Hyperplasia’ and ‘IBS.’ I found absolutely nothing that linked the two but I did find another study that shows that nearly all patients with Irritable Bowel Syndrome and Diarrhea (IBS-D) actually have a different condition!
It was found that patients thought to have IBS-D – a condition which affects up to 15 per cent of the US population (35 million Americans (US study so US statistics – I’m sure the figures apply to other countries, too)) – may in fact have a different condition altogether.
This was the largest study to date and indicates that doctors may use IBS-D as a blanket diagnosis, rather than cite a collection of separate medical conditions.
According to the study, 98 per cent of participants were found to have a diagnosis different from the initial presentation of IBS-D. This study refutes the existence of IBS-D as a single medical entity and implies that this diagnosis is simply a catch-all diagnosis. The findings also revealed that 68 per cent of the participants actually had conditions related to treatable (that means that 68 per cent of us could actually feel better!) bile acid induced diarrhea as a result of gallbladder dysfunction.
A dysfunctional gallbladder that produces an abnormal amount of bile causing chronic diarrhea can be very treatable, as opposed to IBS, for which physicians and patients often search for treatment to alleviate the discomfort, often to no avail.
According to the study, once patients were accurately diagnosed, 98 per cent experienced a favourable response (that is, the elimination of urgency and incontinence for at least three months). Wouldn’t that be nice? The end of a lifetime of discomfort, unease and frustration!
“The results of this study demonstrate quite convincingly that many patients may needlessly be going through the physical and emotional pain of IBS and functional diarrhea when, in reality, they may be afflicted with something else that is easily treatable,” said Saad F. Habba, M.D., gastroenterologist at Overlook Hospital and the study author.
- 41 per cent were found to have Habba Syndrome (a relatively new entity relating dysfunctional gallbladder with chronic diarrhea , which is successfully treated with bile acid binding agents);
- 23 per cent of the study subjects were diagnosed with post cholecystectomy diarrhea;
- 8 per cent had lactose intolerance; and
- 7 per cent had microscopic colitis.
Doesn’t quite add up to the 98 per cent – but it still shows that there is some hope!
- And It All Comes Back to the Poo! (fibromodem.com)
- IBS Affects from 10% to 15% of the U.S. Population, Says the International Foundation for Functional Gastrointestinal Disorders (prweb.com)
***This is NOT dinnertime reading! Do NOT read if you are easily offended, nauseous, or just don’t like to talk about bowel movements***
Isn’t it funny, we all go to the toilet, but we don’t like to talk about it, particularly number twos.
Today, I had a ‘normal’ bowel movement – but what is considered to be a ‘normal’ bowel movement?
A bowel movement should be soft and easy to pass, though some people may have harder or softer stools than others. In general, stool should be brown or golden brown, be formed, have a texture similar to peanut butter, and have a size and shape similar to a sausage. In many cases, a stool that varies a bit from this description is no cause for alarm, especially if it is an isolated incident.
It seems that most of us, especially those with IBS issues, never have a ‘normal’ bowel movement. In fact, our ‘normal’ is more likely to be those ‘really difficult to push out rabbit droppings type,’ or the ‘rush to the closest toilet explosion,’ or even the ‘my ass is dribbling type.’
Most of us who live with FM also have IBS. FM and IBS are co-diagnosed in up to 70% of FM patients. IBS (also known as irritable colon, spastic colon, mucous colitis, or spastic colitis) is a disorder of the bowel, or large intestine. It is characterized by severe abdominal pain and cramping, changes in bowel movements, and a variety of other symptoms.
It has been estimated that as many as two-thirds of all IBS patients have FM, and as many as 70% of FM patients may also have IBS. These statistics differ greatly from the corresponding rates in the general population, where only 10%-15% of individuals are estimated to have IBS. It is unknown if the two conditions are related symptomatically or causally, or if their frequent co-occurrence is merely a coincidence.
Adding pain killers to the mix can be frustrating and painful.
Now, the ‘really difficult to push out rabbit droppings type’ tends to be a constipation. Constipation means different things to different people. For many people, it simply means infrequent stools. For others, however, constipation means hard stools, difficulty passing stools (straining), or a sense of incomplete emptying after a bowel movement. This is called fecal impaction, a condition in which stool hardens in the rectum and prevents the passage of any stool. According to reports in the Journal of Psychosomatic Research, constipation or infrequent stools occur in 30% of FM sufferers.
Constipation also can alternate with diarrhoea. Diarrhoea is an increase in the frequency of bowel movements, an increase in the looseness of stool or both. It is caused by increased secretion of fluid into the intestine, reduced absorption of fluid from the intestine or rapid passage of stool through the intestine. This is the other two types of (what I refer to as) our ‘normal.’
My point to all this crap (Ha! Ha! Lol!) is that I get used to the IBS stuff: I have cramps, I take Buscopan; I have diarrhoea for too long, I take Immodium; and, if I’m constipated, greasy fish and chips seems to do the trick. But when I have a ‘normal’ poo, it feels like it is dragging all my insides out with it. It’s tiring and it’s physically draining. It leaves my body feeling empty (but not in a good way!).
So, is this what ‘normal’ feels like?
- Managing IBS-Related Constipation (everydayhealth.com)
- All About Laxatives (everydayhealth.com)
- Herbal Remedies For Constipation (onlineherbs.com)
- Natural Help To Relieve Irritable Bowel Syndrome Symptoms (smmirror.com)
- Poop Health: Everything You Want to Know But Haven’t Asked (greatist.com)
Research findings from the Walton Centre in the UK report that the small bowel in FM sufferers (and when it comes to IBS, we are definitely sufferers!) shows overgrowth of abnormal bacteria. The study demonstrated an increased intestinal permeability that produces increased hyperactivity of the intestines. Intestinal permeability means abnormal substances gain access to the body and alter its immune function.
According to reports in the Journal of Psychosomatic Research, constipation or infrequent stools occur in 30% of FM sufferers. Constipation is defined as having a bowel movement less than three times a week. Some individuals complain of abdominal pain and straining to move the bowels in conjunction with the constipation.
Clinical Nurse Specialist describes diarrhoea occurring in up to 90% of FM sufferers. Individuals describe a pressing urge to move the bowels as well as passage of unformed stool. Diarrhoea occurs along with high levels of anxiety. Reports in the Journal of Nutrition indicate ingestion of probiotics decreases the symptoms of diarrhoea.
The Journal of Psychosomatic Research reports 2% to 7% of individuals with FM report uncontrolled passage of stool. This fecal incontinence transpires frequently in concurrence with diarrhoea and creates major problems in daily life. If it has ever happened to you, you never want to leave the house again (or, at least, without knowing where the closest toilet is!)
According to the Journal of Psychosomatic Research, gastroesophageal reflux disease describes the condition where food travels backward from the stomach into the oesophagus. The oesophagus is the tube connecting the mouth to the stomach. Characteristic symptoms of gastroesophageal reflux disease include epigastric pain, a sensation of fullness, and heartburn. gastroesophageal reflux disease and other intestinal problems occur in 50% of FM sufferers.
I have tried some (very expensive) probiotics without any improvement. Basically, I make sure that I have a constant supply of Imodium, Buscopan and Durolax on hand, at all times.
Has anyone found something that works (not just on symptoms)?
- Managing IBS-Related Constipation (everydayhealth.com)
- How Fiber Helps Ease Constipation (everydayhealth.com)
- What Does IBS Pain Feel Like & My Tips For Living With IBS (femaleimagination.wordpress.com)
Day 3 – Spent the morning with The Kid, until after we both had a nap.
No change in medication today but severe nausea (only after nap). Mommy asked if it was because of the change in medication? How would I know – it could be the FM itself, the medication, something I ate, etc. Don’t you just love this condition!
And now my tummy (and bottom) are very upset! Hmm…too much information?
I’ve been feeling really good lately (other than flu, boobie stuff and, of course, the all-pervasive fatigue – but there was no real FM pain); but I refused to write it on here or speak it out loud because that would be pushing my luck.
Yesterday, as you know, I had THE phone call with my father and today, Mommy left for China; and today, I woke up in the worst pain I have ever had!
I woke up at 9am but it took me until 11am to get the energy to swing my legs to the edge of the bed (while ignoring the pain in my hands and legs) and hoist my body up. I slowly and carefully went to the bathroom, then to my spot on the couch. Then I ran (yes, ran!) to the bathroom again with severe abdominal pain. Back to the couch. Back to the bathroom. To the medicine drawer for some Buscopan.
After about an hour of this, the pain seemed to lessen (at least, in my stomach) so I got dressed and ready to go to my Pain lecture. If I was pregnant, I would say that right then, labour started again. Back to the bathroom. To the phone to cancel my attendance, then to bed with my heat pad for a 2.5 hour nap.
When I woke up, my stomach hurt less but the rest of me was screaming. For three hours, I debated whether I should go to hydrotherapy. Finally, I decided that, it was because my body hurt so bad, I had to go. I couldn’t lift or move my legs – they wouldn’t work properly, not even in the water. I lasted half the class.
I got home and, after a sandwich (my first food of the day), it was back to the bathroom (a number of times) and some Imodium and more Buscopan.
So, having only been diagnosed with FM for a relatively short time, I can now quite assuredly say that stress brings on flares!
So, point proven – where do I find the stop button now?