It seems every week brings more news highlighting the surprising importance the gut has on our health.
A couple of years ago the Solve ME/CFS Initiative funded a pilot study on the effects of exercise on chronic fatigue syndrome (ME/CFS) patients gut flora. It was one of those multi-faceted studies that Suzanne Vernon loved funding. There was an exercise component, a gut component, a blood and stool component and a time component. It took quite a while to get published, but here it is.
In this small (n=20) study they first examined the gut flora (stool sample) and the bacterial component of the blood. Then they had people with chronic fatigue syndrome (ME/CFS) and healthy control participants pedal themselves into exhaustion on a bicycle. Then 15, 48 and 72 hours after the bicycle test, stool and blood samples were taken again.
Could the gut be contributing to the post-exertional malaise in ME/CFS?
The idea was to get at a possible cause of post-exertional malaise. The study was driven by findings suggesting that the gut flora can be dramatically effected by exercise. The flora of the gut is so responsive to exercise that one review paper suggested that it “acts as an endocrine organ and is sensitive to the homeostatic and physiological changes associated with exercise.”
In healthy people exercise appears to improve their health by enhancing the diversity of their gut flora. Could the gut flora/exercise interaction be a double-edged sword, though? Could exercise trigger changes in the gut that produce exhaustion instead of health? In particular, could it cause gut microbes to spill into the blood – setting off a devastating immune response causing fatigue, pain, cognitive problems and other symptoms in ME/CFS.
Let’s see what they found:
Results
These findings suggest a role for an altered gut microbiome and increased bacterial translocation following exercise in ME/CFS patients that may account for the profound post-exertional malaise experienced by ME/CFS patients. The Authors
It’s important to note first, that gut symptoms were not, repeat not, required for this study. The patients in the study reported few gut symptoms. The gut, it turns out, can be severely impaired without generating many symptoms, or it can produce dramatic symptoms without it being severely impaired. Both celiac disease and non-celiac gluten hypersensitivity, for instance, can exist without significant gut symptoms being present.
Heart Rate – A Slight Digression
Except for heart rate (which was reduced) the VO2 max and other measures were similar between the healthy controls and the ME/CFS patients. An inability to ramp up heart rate to normal levels during exercise is called chronotropic incompetence (CI). While not as well-known as the reductions in VO2 max CI has been found ME/CFS – and it is associated with “exercise intolerance” in other diseases.
A 2011 review indicated that CI “produces exercise intolerance which impairs quality-of-life, and is an independent predictor of major adverse cardiovascular events and overall mortality” (ouch). CI appears to be caused by sympathetic/parasympathetic nervous system problems.
Gut Flora
The study suggested that exercise may have major, even outsized effects on the gut flora in ME/CFS. Instead of being less responsive to exercise, the gut flora in ME/CFS was significantly more responsive to exercise than that of the healthy controls. Exercise increased the abundance of 6/9 of the gut phyla in the ME/CFS patients but only 2/9 major phyla of the healthy controls. The gut bacteria had bloomed in the ME/CFS patients.
Suzanne Vernon said they didn’t know why exercise was causing the bacteria to grow so much in the ME/CFS patients but likened it to a “bacterial bloom.”
I hypothesize that it is akin to a “bacterial bloom” that is not healthy and potentially contributing to increased inflammation and other problems that occur when something (in this case bacterial growth) happens too fast and furious throwing the balance off. Suzanne Vernon
Exercise prompted the growth of gut bacteria in people with ME/CFS
The increased abundance of bacteria in the stools of ME/CFS patients was reflected in their blood. Fifteen minutes after exercise species of Clostridium bacteria popped up in the blood of ME/CFS patients. Bacilli bacteria showed up at the 48-hour mark. While most bacterial loads declined in the blood of the healthy controls, they remained high in the ME/CFS patients three days after the exercise.
Clostridium are obligate anaerobes that thrive in oxygen-poor environments. Five species including C. botulinum, C. tetanus, and C. dificile cause the most severe problems in humans, but many others are involved in gut health. Suzanne Vernon said that the Clostridium complexes that showed up in the study were important regulators of gut health.
Some translocation from the gut to the blood occurs even in the healthy people, but it occurred to a greater degree in the ME/CFS patients in this study. The findings suggested that exercise was, either by altering the gut flora or by some other means, compromising the integrity of ME/CFS patients gut lining. Once the gut bacteria escaped into the blood, it was sure to be attacked by the immune system.
Maes may have been the first ME/CFS researcher to glom onto this potential problem. His 2008 study described what was at that time a “novel pathway” of ME/CFS causation: weakened gut junction barriers allowing/allowed the escape of gut materials into the blood.
Finding evidence of increased immune responses (IgA/IgM) to those gut materials Maes had his ME/CFS patients embark on a year-long leaky gut diet and anti-inflammatory supplements program containing glutamine, N-acetyl cysteine and zinc. The diet/supplements reduced the levels of the pro-inflammatory factors in their blood and many patients improved.
Maes later showed that immune responses to gut material that leaks into the blood can cause depression, and in ME/CFS are associated with increased symptoms. He recently produced a grand schema that proposes that many factors including gut bacterial translocation underpin a wide variety what he calls inflammatory and oxidative and nitrosative stress disorders including depression, inflammatory bowel disease (and ME/CFS).
Given the increased abundance of Firmicutes species found in ME/CFS in this study, it’s intriguing that Rifaximin, an antibiotic sometimes used in irritable bowel syndrome (IBS) preferentially reduces Firmicutes species including Clostridium sp.
Anecdotally, some ME/CFS patients have reported remarkable mood and other changes after altering their gut flora. Esther was able to go off her antidepressants, cut out Xanax and Ambien, half her dose of Trazodone, and say goodbye to her shrink after Rifaximin treatment for some gut problems.
I asked Suzanne if she’d had any expectations what the study would find. She didn’t know what to expect with this study – except that she expected to find something. The gut is so large and complex, and there is so much we don’t know that it was impossible for her to predict what they might find.
The fact, though, that they were able to detect significant changes with such a small sample set (10 patients and ten healthy controls) was “pretty exciting” to her, and indicates that the microbiome might indeed be very important in ME/CFS.
Has Shukla or is Shukla trying for an NIH grant using the findings? She said he did submit a grant proposal in 2010 or 2011 which was not rewarded but hoped that with these “exciting results” and the recent NIH promise of more research funding that Shukla would try again and be successful.
She noted that larger studies able to pinpoint individual species and determine microbial diversity are greatly needed. We are just at the beginning of learning what is happening in the guts of ME/CFS patients –
There are many unknowns with the gut microbiome in ME/CFS, and so there is a lot of room for well-designed scientific exploration of the gut microbiome. As my friends (who also happen to be patients remind me) remind me the most important research for them is the kind that is going to bring treatment sooner rather than later. Suzanne Vernon
The authors noted that gut flora manipulation including probiotics, prebiotics, dietary fiber, and fecal microbiota transplantation has proven helpful in “other chronic, inflammatory, non-communicable diseases.”
Much more clearly needs to be done. This study was too small to be able to pluck out individual species or to assess the abundance of groups of rarer phyla. It was a pilot study; a preliminary look at the effects of exercise on the guts of ME/CFS patients, but it did suggest that something different is happening and that something is showing up in their blood as well. Hopefully it will translate into a larger study or studies.
In the meantime you can add the gut to a growing list of systems (cardiovascular, immune, nervous system) studies indicate are effected by exercise in ME/CFS.
We are a long, long way from understanding the role the gut plays in ME/CFS. The initial findings are, however, promising. At least five gut studies are currently underway in ME/CFS: two (maybe three) by Dr’s Lipkin and Hornig, a Maureen Hanson study, the UK’s ME/CFS microbiota project and the Open Medicine Foundation’s severely ill study.
Hanson’s NIH funded gut study hasn’t gotten much press but it’s impressive, has been underway for awhile and may be finishing up soon. It won’t have an exercise component but it looks like Hanson’s study may be able to identify the individual species in the gut. The study will determine the bacterial diversity and composition of the gut flora in ME/CFS patients and healthy controls. She’s working with Dr. Susan Levine and an experienced gut researcher, Dr. Ruth Ley.
Gut Recovery Stories – The latest recovery story published on Health Rising features the diet and the gut. Check it and other Gut Recovery Stories out here.
Update! – check out a followup study from these researchers that could help explain post-exertional malaise.
This is fascinating! I suffer from gut problems (brought on by antibiotics) and also exercise intolerance, and I’d never linked the two until now. Very interesting, thank you Cort!!
Drew , what causes you to be exercise intolerant?
I though antibiotics destroy valuable flora in the gut and yet refaximin is helpful. It’s all very confusing.
That antibiotic destroys, I believe, more pathogenic bacteria. I think that’s why it’s used in SIBO at times. I imagine repopulating the gut with better bacteria is important as well.
Well well well! That’s really interesting and it makes sense to me. Since going all out to cure my SIBO, first a course of Rifaximin that didn’t work and then three weeks on an elemental diet that did (after a difficult return to ‘real’ food) my bowel function is much more normal, my mood has improved and I no longer have fluctuating energy levels and post-exertional fatigue. I can now exercise with a HR of 130+ several times a week and suffer no ill effects. After three decades of ill health I can hardly credit it.
Improved mood, energy and the ability to exercise more – I’d say manipulating the gut through diet can work. Did you use any pre or probiotics? Do you have any other gut work planned? Congratulations and thanks for passing it on.
Interesting.. I have Had ME/CFS for 10 years. Severe now as well as severe POTs and NMHypotension. I have been GF, Cassein free ( re stool identified intolerance) take L-Glutamine powder, NAC, Acetly-L -Carnitine, etc, and a well diversified soil based (survives the gut) probiotic and continue to get worse.
I am glad we are digging deeper.
“The increased abundance of bacteria in the stools of ME/CFS patients was reflected in their blood. Fifteen minutes after exercise species of Clostridium bacteria popped up in the blood of ME/CFS patients. Bacilli bacteria showed up at the 48-hour mark. While most bacterial loads declined in the blood of the healthy controls, they remained high in the ME/CFS patients three days after the exercise.”
Would this be similar to a very low-grade sepsis-like infection?
My daughter has CFS and this Easter went down with Sepsis. She is ok, but still suffers from CFS.
I was wondering also if this is somehow a low grade fotm of sepsis since it felt like I damn near died
Interesting. During my first year of CFS I was tested with a stool culture and they found salmonella. After six days of Cipro, I thought I was cured of CFS. It lasted about three or four months and then I slowly slid back down. Subsequent courses of Cipro did nothing. Still not sure what happened, but I wish I could make it happen again. Thanks for the article!
Sue, Something similar happened to me with Levaquin. I was on 14 days for diverticulitis. I was absolutely shocked at how my fatigue lifted. But, a subsequent 7 day Levaquin only helped a bit. The gut can be mysterious, and there are many different congenital issues associated with malrotation/malattachment of the gut ( occurs early in fetal development). I have a long, redundant, tortuous colon – which some researchers believe are a variation of these malrotation phenomena. Read about this. I think it is important, but not yet mentioned by researchers.
Very interesting. From the very beginning of this illness for me (30 years ago), I experienced changes in bowel function (several days of constipation) after exercising. I was, at the time, quite athletic, and saw my tolerance to exercise dwindle over a couple of years, before a definite crash. I have been exercise intolerant ever since and, during my best times, can walk 20-30 minutes a day.
These past 9 years, I use a strong probiotic (VSL3 twice a day) and a treatment of Humatin (Paromomycin) every 4-6 weeks. These were recommended for me by Dr de Meirleir in 2006. Usually, the Humatin treatment gets me back on track, but the effect does not last. I am now looking to exploring (again) a diet that will minimize leaky gut.
I very much look forward to the upcoming gut studies.
Thanks to all and especially to Cort for his work.
Carole
I am curious as to how much NAC (something I already take), glutamine, and zinc was prescribed for the anti-inflammatory effects.
It’s interesting that at least one of the bacteria (Clostridium) grows in environments with low oxygen. Considering that previous studies have shown abnormal oxygen delivery to muscles in ME/CFS patients, it seems there might also be poor oxygen delivery to the intestines. Then, the bacteria like to take advantage of post-exertion abnormalities. They throw a post-exertion bacteria party, inducing our immune systems to go nuts on them. We then get the exercise hangover. 😉
What confuses me is that there were no differences between patients and controls in terms of heart rate, VO2, etc.. Were these measures not taken post-exertion?
Really well-done coverage of this study.
correction: HR was different, but other measures like VO2 weren’t. Still curious.
Thanks….
The similar VO2 max scores are actually pretty common after one exercise bout in ME/CFS; it takes a 2-day exercise test for VO2 max levels to drop in many people with ME/CFS.
Inspiring findings!
There are quite a lot of recent studies that found S. Boulardii to inhibit Clostridium and other pathogens responsible for dysbiosis. Bonus: it’s a comparatively cheap supplement. My experience has been that if I take it before bed I awake urgently 8 hours later feeling horrible… but, then I pass a stool and feel great. Perhaps it’s flushing out the baddies.
This article also dovetails with the finding that LDN has activity as an antagonist of TLR4. TLR4 recognizes LPS on bacteria and triggers an immune response. If bacterial translocation is occurring chronically then TLR4 gets overstimulated. Presumably LDN tamps this down.
Thirdly: the zonnulae, claudins, and occludins that comprise the intercellular matrix between enterocytes are structurally similar to those of the BBB (blood-brain barrier). So, anything leaking from the gut to the bloodstream can potentially infiltrate the brain too 🙁
Thanks for all the info Sean. I had no idea that the junctions were similar in the gut and the brain! Or that LDN reduces immune activation after bacterial translocation. Interesting – thanks:)
“You can only connect the dots you collect”
Thanks for all the work you do Cort! You’ve curated such a wealth of information on this site; it’s nice to be able to contribute something. I spend a lot of time browsing PubMed trying to find patterns that might otherwise go unnoticed.
Sean, if you ever get the urge to turn all your detective work into an actual study the community can participate in please join us at Mendus.org.
Josh
Could you please take the extra 3 seconds to type out the abbreviations at first use. The information is useless to me when I do not know what you are talking about. LDN for instance.
Right….LDN is low dose naltrexone
The supplement dr. Maes used is DJ-Repair, manufactured by Springfield, a firm based in the Netherlands I believe. I have had good results with it for IBS pain and -bloating.
Another in the eye for the ‘all in the head’ and ‘pacing’ crowd
This interesting. I find, if I’ve something to do, that I fare much better doing that thing on an empty stomach. I often don’t eat at all in the morning – just a cuppa. Wonder could this – less PEM on an empty stomach – be linked to this factor in ME.
I also eat kefir daily. Perhaps it helps me too? I certainly suspect it helps to keep my mood positive.
Dr. Cheney used to say “If only ME/CFS patients didn’t have to eat they would do better :)”
Perhaps this is the reason patients often lose their appetite/sense of hunger with this illness. Could it be the brain trying to protect the body from something (food) that although essential, is also harmful in some way?
I was just recently diagnosed with BPPVertigo there are other types as well one can have like MAV Migraine Associated Vertigo plus others even one type associated with Motion of Boats Aircraft an Optician also confirmed Nystagmus plus I went back to look at an old Brain Spect Scan from when I first got Sick it also said Nystagmus…BPPV can play t
roles on gut as well Brain fog is also a symptom as well so is fatigue…
Other type of vertigo is called Mal De Debarquement Syndrome see Wikipedia a Paper published in USA shows 70% Cure rate it is also a different maneuver used it is not the Crystals that are found in BPPVertigo it is the Brain sending the wrong signals it is related to motion sickness from Airplanes or Ships sailing etc it is a type of motion sickness it has all the symptoms of CFS question is this related to Ehlers Danlos Syndrome I do not know…A recent paper on EDS Hypermobility came out on a find of genetic markers found but has not yet been replicated…In MAV Migraine Associated Vertigo a Migraine diet is used no Caffeine no Soda no chocolate numerous foods eliminated with this diet as well…
My doctor did a gut microbiome lab test from Genova Diagnostics, the report said there was a lack of diversity. My doctor’s advice was to use several different brands of probiotics.
From Genova’s website :
Our GI Effects Microbial Ecology Profile offers the ability to detect and identify parasites, as well as provide valuable assessment of gut microbiota via 24 Commensal Bacteria targets. Insight gleaned from this profile may effectively provide insight into the root cause of gut symptoms and guide treatment that is designed to get patients back to good health and a normal routine.
This makes total sense to me. When i first came down with M.e one of the worst symptoms for me was thatwithin seconds of eating any food i felt terrible, literally as though my blood had been poisoned- i felt I was dying – Ive really worked on healing my gut by cutting out yeast gluten and sugar and have made remarkable progress- my headaches and rashes are much less, my glands are less swollen I have less pain now too and I have many less sore throats- Im well on the way hopefully to recovery now. I still do have issues after food sometimes but much much less than I used to and I am starting now to excersise- I firmly believe in this gut theory.
6 years ago, after i took 2 courses of fluoroquinolone antibiotics, my PEM went from mild to severe. I have not been able to work since. So yes, this is all so very interesting. Years ago I worked as a med/surg RN, and I remember some docs would order blood cultures routinely for every patient who had even the slightest elevation in temperature-they rarely came back positive, so I was a little shocked to read about translocation in healthy persons. ?? If anyone has an explanation for this I would like to hear it.
Recently read an article about parasites and hookworms used to heal MS patients by adding good bacteria into the gut.
Dorothy can you Please provide this link here or email me… I have a friend very sick with MS Thank you :)’s this is also my email as well mraidangwalsh@gmail.com I am now going towards a high Protein diet plus seeing Doctors about all types of Vertigo vestibular issues will advise if I get any good results…Gut doe play a role but I am convinced it is coming from the Brain or it is Genetics I have seen people get well treating the Vertigo types fully recovered…I will try share a link on this as well it was put up by a guy in the UK he was told he had ‘Viral Labrynthitis’ which is a form of Vertigo he is well…
aidan –
Somebody actually just wrote a whole book about it – it’s called ‘An Epidemic of Absence’ by Moises Velasquez-Manoff (yes I had to look up his name)
It’s a in-depth look at how and why he believes the gradual reduction of parasites in our guts has led to the massive rise in auto-immune related diseases in the last century.
He provides all sorts of statistics and studies relating to MS and auto-immune issues all over the world, and threads this into his own story in which he travels down to a very shady mall in Tijuana where he has tracked down somebody willing to treat him with the hookworm he believes he needs to cure his complete alopecia.
It’s very wordy and packed to the hilt with info + stats, but utterly fascinating and I’m sure useful in some way for your friend if he/she hasn’t already read it.
I’m struggling with CFS/ME for 13 years. This pilot study make sense to me. I’m from Brazil and there’s few treatments, informations about this illness. Since the beggining I had and still have gut problems and all the CFS/ME symptoms, mainly, profound post-exertional malaise after walk or use the stairs, too much sleep, muscle and bone pain, migraine, brain-frog, etc ……. I already suffer for a life! Congratulations! Keep on studying , please! God bless everybody! Thanks!
Thanks Debora – good luck with everything!
You might have b12 deficiency-it’s linked to gut issues & causes many of the same symptoms.
I still don’t quite have an understanding of how exercise/exertion can promote translocation of bacteria. For myself, it doesn’t take bouncing around and churning of the GI tract to trigger PEM. I can cause myself to “crash” by being very still and squeezing a ball for too long. What are the possible theories on how exertion plays a part in this, please.
Thanks so much, Cort, for bringing some hope that answers are being found.
I actually don’t know if anyone knows how exercise could cause bacterial translocation or how it effects the gut flora. If you have leaky gut I imagine that you have it all the time – not just when you’re exercising; it might just get worse when you exercise. It could be contributing to PEM all the time.
I suggest gut ischemia, intestinal mucosal ischemia to be more precise, could explain the reason for increased gut permeability and bacterial translocation. The oxygen demand from the intestinal mucosa layer is tripled during the digestion process, exercising after food intake can divert this blood flow from the mucosa to skeletal muscle resulting in a hypoxic state in the bowel. Also because of the low blood volume often found in ME/CFS, it’s possible to contribute to a low flow state through the (mesentery) arteries that supplies blood and oxygen to the bowel resulting in intestinal ischemia of a nonocclusive cause through spasm of the mesentery artery microvascular network, something that is usually accompanied by pain but can be devoid of any symptoms at all. Some causes of cardiac insufficiency have the same effect.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1378153/pdf/gut00547-0078.pdf
@KangaSue
Thanks for the explanation of a possible connection to the exertion factor. If this holds true, what are possible mitigating approaches one might take – small meals and forced resting afterwards? Are you aware of any CFS research investigating this? Thank you
KangaSue,
Yes, gut ischemia and intestinal mucosal ischemia. And I believe this is related to malattachment/ malrotation phenomena. The gut has enormous influence on the immune system. My one dear friend with severe CFS/ ME/ SEID died at age 56 with a late -,undiagnosed volvulus. She apparently had a ‘twist’ in her bowel for 30 years – following hystectomy. I think we will find that there is a relationship between scoliosis and malrotation of the gut.
Dear Cort, your UK readers may be interested to know that a research strategy investigating the role of the gut in ME/CFS is underway at a world-class facility, which is also the base for the first UK/European Centre of Excellence for Translational Biomedical Research for M.E. The foundation study is on the role of gut hyperpermeability (leaky gut). One of the intercalating medical students involved in this research spent a productive 3 months at Cornell with Maureen Hanson, and Mady Hornig spoke at a meeting at the research park in October. This is all developing from the plans for Centre of Excellence announced by the UK charity Invest in ME (aka Invest in ME Research) in 2010 and crowdfunding for the research was initiated by patients in 2011 via a campaign called ‘Let’s Do It for ME!’ This is the page on Invest in ME site about the gut research – http://www.investinme.org/LDR%20UK%20Gut%20Microbiota.htm
The foundation project is underway and next phases are being planned. While Norwich Research Park is the hub for the translational research strategy, other UK researchers currently involved are at UCL (the B-cell research linked to the rituximab clinical trials) and Oxford (Angela Vincent).
All the relevant links may be found via Invest in ME Conference/Colloquium site – http://investinme.eu/
The patient-run site supporting these projects is at ldifme.org
Thank you and best wishes for the year ahead.
That’s great news Jo and thanks for passing that along. Congratulations to Invest on ME on moving forward on that.
@Jo,
In case you’ve forgotten there already is a UK ME/CFS Centre of Excellence at Newcastle University & Newcastle Hospitals.
It is led by the redoubtable Prof Julia Newton and has been funded by the ME Association, Action for ME and ME Research UK as well as the Medical Research Council.
The excellent 2015 CMRC conference was held in the city too.
best wishes
Sean
The above comments really resonate with me. I often feel pretty normal until I eat something (anything), and then I feel profoundly achey/brain-fogged/depressed. And exertion of any sort just makes everything worse. But it’s not just exercise; it’s any physical stress on the body, such as poor sleep, prescription medication, or even amino acid supplements(!) And all of these things aggravate my acne, even though I’m an adult … so the finding about toxins entering the blood makes complete sense to me (acne being a sign of toxin overload).
Besides being incredibly frustrating, this is such a BIZARRE illness.
I just had an idea. Is it possible that the unrefreshing sleep ME/CFS patients experience is due to “bacterial bloom” occurring during sleep, and the body trying to fight this off? I wonder if anyone has looked at this? (Cort, would you know?)
Hi Cort,
Great article, both yours and the one you’re writing about. I really think this is it. We’re getting close. I’m going to try to speed things up a bit with a microbiome study on Mendus. Should be launched in early 2016. As always, everyone is welcome to join.
Josh
I have exercise induced symptoms, like the flu. The last time I did an actual workout was in Sep 2014. I can only manage walks and light hikes. I have low levels symptoms all of the time. In Sep 2012 I realized that MASSAGES gave me the same symptoms. 🙁 Even a massage chair. This started before workouts became a problem. I’ve never heard of anyone suffering like this from a massage. I feel really alone in this experience and wonder if I will continue to miss something in my health because I can’t find anything on this. Have any of you experienced massage induced fatigue or flu-like symptoms as you do with exercise?
I’ve definitely heard of it. You are not alone. Some people experience massage induced PEM and others do not. Good luck on your search.
Me!
Before I got sick, I had to be VERY careful with massages because I get ill in the days (or hours) after having one. I don’t remember any fatigue, specifically (although before fibro I didn’t take much notice – life was much more simple then!) But I would feel very shivery and achy and immune compromised – like I was going to get the flu.
I remember telling this to a massage therapist once hoping for some interesting feedback, but he insisted it wasn’t possible because massage only did positive things for the immune system. I felt like a fraud! (Little did I know I much I’d become acquainted with that feeling..)
Interestingly it doesn’t happen so much now, although maybe that’s because I’ve worked out exactly when I can and when I can’t get a massage. If it’s a really stiff, super-painful muscle day, it will loosen the muscles and I’ll feel great for a few hours. But if it’s one of those creepy, sinister feeling days where the pain is duller but my whole body is just ‘off’, then Noooo! I’ll be on my back for days!
Anyway – all this to say it’ not just you!
These studies are very interesting. My daughter has had CFS for 4 years with no official diagnosis, just agreement by all docs that her symptoms are those required for diagnosis and she doesn’t have any of the “bad” reasons, e.g. cancer, for her symptoms. She has been subsequently diagnosed with cyclic vomiting syndrome/abdominal migraines. She is managing her chronic symptoms as well as can be expected for a former competitive gymnast and active teenager. Her GI wants to help but doesn’t know where to direct us now. Even though we are by a large children’s hospital, no one really knows what to do with her other than to treat her symptoms that are most outwardly disruptive. She has big ambitions to travel and go away to college but this hangs over her, weighing on her soul.
Like others have commented, I had GI symptoms when my CFS first started (29 years ago). No matter what I ate I got severe bloating after eating. I am a dietitian and thought I could figure out the cause on my own. Nothing I tried helped. The bloating just seemed to go away on its own after about 10 months. Back then I don’t think we even had the terminology “leaky gut.” I was exercising a lot (normal for me) and also had a course of a heavy-duty antibiotic following abdominal surgery for infertility. A few years later I went for a colonoscopy and the physician had a terrible time trying to get the scope through my colon and finally gave up after turning me all sorts of ways. He said my colon had a lot of twists and turns that prevented him from scoping more than half-way and even that was an ordeal. The Versed didn’t help and I was awake. I can’t help but think that all of this began as a gut problem. Even after almost 30 years of trying dietary changes and a multitude of things to try reverse the CFS nothing helps. I get PEM from the slightest attempts to exercise, or as another person commented, “just squeezing a ball.” Other triggers: gentle massages, stretching, gentle myofascial release therapy, prolonged sitting/standing, stress and a long list of other things – anything that puts tension on my skin aggravates all of my symptoms.
Thank you for this helpful information. (Could you please correct the typos, whereby “effected” has been substituted for “affected”?)
Thank you, Cort, for this new information on increased gut permiablity after exercise in M.E patients. I can really relate to this having had M.E. symptoms since my twenties arising from mesenteric and kidney T.B. This was treated by strong antibiotics for three and half years in my thirties.In January, I started treatment of Vit B 12 injections, T3 and LDN ( low dose naltrexone) and this is beginning to help with reducing extreme fatigue. All along, gut symptoms along with night sweats, pain and bloating have been the most difficult to deal with. I have also reduced gluten, dairy, yeast and suger as much as possible, and this also seems to help. It seems that if you can improve gut health, M.E symptoms will also improve.. this observation was made some years ago by, I think, Dr Charles Shepard. It is wonderful to see this borne out by research, just what is needed to push the quest for a solution, or more likely, a range of solutions for this terrible condition.
I would love to be connected to the people involved in this study. I completed my dissertation in 2006
On microbial translocation into lymph and blood as it connects to chronic inflammation causing such things as IC, fibromyalgia, etc…. The exercise dynamic described here is EXACTLY
What I say happens— we could perhaps benefit one another’s work. Please contact me! Dr. Matia Brizman
Hi Matia,
I’m not in that study but interested in exploring the connection further. Would it be possible to get a copy of your dissertation or the articles that came from it? I run a little website called Mendus (.org) and have been thinking of trying to setup a little DIY project to allow people to investigate this in a standardized. That would allow us to pool the results and hopefully push our knowledge forward a tad.
Joshua
Dr. Matia Brizman contact me @ deandamarc@hotmail.com I have Gulf War Illness and all of us vets have fatigue AND GI issues, so there is a connection. I have almost ALL the pieces of this puzzle.