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SIBO and ME/CFS similarities ......

ljimbo423

Senior Member
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4,705
Location
United States, New Hampshire
This is just a few posts I read at an SIBO forum. Many of the symptoms from their SIBO are exactly like ME/CFS. Pain, debilitating fatigue, food allergies and sensitivities etc.

I'm convinced that my ME/CFS started in my gut and now I have a better understanding of why I've struggled so long and still haven't gotten 100% healthy. Although I'm fairly mild and use to be severe. The struggles these people are having, I think explain my struggles too.

As these people show, putting SIBO and all it's symptoms into remission, can take a very long time and be extremely difficult!

SIBO is a very "chronic" condition.

Here are 2 quotes from below for those that don't want to read the entire 3 posts-

SIBO Patient 1-

I'm 29 and have been forced to move back in with my parents since I can no longer hold down a job. I react to everything I eat, always bloated and uncomfortably distended, and can't workout anymore due to widespread joint pain and chronic fatigue.

SIBO patient 2-

I have: extreme bloating, I need to limit myself to 100 carbs, fructose intolerance, diary allergy (Eosinophilic esophagitis) – now dairy free, celiac disease (gf 1.5 years, no difference, tested for refractory etc), and pain in my lower left abdomin.

I am always getting hurt and can barley exercise (I used to be a college runner). Every 2-3 months I get way worse and life is put on hold.



3 Years later, same breathe test
Hi, I've had Sibo for three years and every single treatment has failed.

I have: extreme bloating, I need to limit myself to 100 carbs, fructose intolerance, diary allergy (Eosinophilic esophagitis) – now dairy free, celiac disease (gf 1.5 years, no difference, tested for refractory etc), and pain in my lower left abdomin. I am always getting hurt and can barley exercise (I used to be a college runner). Every 2-3 months I get way worse and life is put on hold.

I've tried:
FODMAP multiple times – I discovered fructose
Specific Carb Diet – low carb diet helps
Autoimmune Paleo diet – only helped bc low carb, reintroductions fine
Multiple Rounds of Rifaxmin – not even a dent in the bloating
Iberogast – motility stimulator – helps a little bit – If I stop this I can no longer function
Candabacitin AR/BR – herbal antimicrobial – helps a little but then it evens out
Gotten tested on CT scans, 7 endoscopies in last 3.5 years, coloscopy, breath tests etc. The only thing I know for sure is celiac (90% confident but I was not bloodwork positive), EOE (dairy makes my thr oat swell), and positive breathe test (same exact results as 2 years ago meaning nothing has worked.)
I've tried other diets and supplements too. My fifth gastroenterologist and my functional nutritionist have both said they are not sure and are referring me on.

Anybody have a similar story?

Thanks,
Mike
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Melissa SteeleAdmin 25d

Hi Mike, I'm so sorry to hear you're struggling. Your story is similar to so many who go through years of searching for the answers to no avail. I'm incredibly sorry you're going through it. I've worked with Spark Health in Solana Beach for years, have you tried a naturopathic or more natural approach or have you been working with western medicine through your experience? I will be up front in the fact that I had every test under the sun with western medicine, many of them several times, and the results were always inconclusive. They had NO IDEA what to do with me.

It wasn't until I started my journey with naturopaths and natural medicine that I was able to make any progress. I do know that Spark takes clients remotely, I've worked with Dr. Cicerone for years if you wanted to reach out to them. Also, I tried all the diets you did and none worked to alleviate any of my symptoms. While it's incredibly strict, the dietary protocol on this website has helped myself an d several others who have stuck to it religiously. I'd encourage you to give it a try and see if it improves your symptoms. Sending you lots of love, light, and healing vibes during this difficult time.
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kylesquad 21d

Hey Mike, I find myself here preparing to share my story as it is incredibly similar to yours. I hope you are able to manage your mood better than me as I've been dealing with this for 3 years now too.

I'm 29 and have been forced to move back in with my parents since I can no longer hold down a job. I react to everything I eat, always bloated and uncomfortably distended, and can't workout anymore due to widespread joint pain and chronic fatigue.

Had every test done and tried everything you mentioned to no avail as well. I can't see myself existing through another year being this miserable, but have one more possibility to consider. I'm pursuing a Small intestine aspirate and fluid culture test.

The idea behind this test is that it is much more specific and can help identify certain bacteria and respond accordingly with the antibiotic best suited to treat them. I have tried rifaximin multiple times as well with no improvement so I'm holding out hope this will help.

I'm afraid if this doesn't pan out it's going to be my last attempt as I don't have the strength to continue like this. I sincerely hope you and everyone else here can manage to find your way through this. Best of luck.

http://www.beatsibo.com/forum
 
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nerd

Senior Member
Messages
863
I think you can find similar reports in many other chronic disease groups. Especially for people with mild and early neurological conditions, with mild kidney and liver diseases, with mild and early autoimmune diseases, and with psychiatric diseases. What you found, though, were potential reports of PEM. I think CFS is often overlooked in diagnosis because many doctors believe its sole and primary symptom is fatigue. From my perspective, the best symptomatic predictor is PEM. But it's not completely clear to me if they have PEM or just very poor health due to metabolic issues. Sustaining PEM is difficult to identify, unfortunately.

From what I read, GI issues aren't uncommon with CFS/ME, neither are they with autoimmune diseases. It's possible that SIBO is just a correlating condition. It's possible that the real pathology of these case reports isn't known and that SIBO is just the first-best explanation because GI diagnosis has become common and probiotics have become a profitable market. I also got GI diagnoses before my CFS diagnosis. They told me to take probiotics, change my diet, and wait, no need for further diagnosis.

But GI diagnoses aren't the only thing that often overlaps with CFS/ME, in my personal opinion. The reason for this is that the methodology of current medical anamnesis hasn't changed much since medieval times. It's still based on symptoms and not based on a broad-spectrum statistical analysis of biomarkers. Blood markers are usually only used as confirmation, not as an indication. There is no clear universal guideline to differentiate diseases.

So it's possible that a MD makes an anamnesis for a specific disease and if this disease is confirmed, it's possible that the confirmation is based on an over-sensitive biomarker. Without a sophisticated inter-disciplinary differential diagnosis, it's not always granted that you treat the right or the causal condition this way.

If the disease of the anamnesis isn't confirmed, though, because of a biomarker without sufficient specificity, some doctors assume psychosomatism because they don't have sophisticated knowledge and experience with similarly-manifested diseases that require different biomarkers. Our current medical system puts the whole responsibility of this differential diagnosis of chronic conditions on GPs.

It's virtually impossible to achieve such a degree of experience and knowledge as a single practitioner who treats the common cold and influenza most of the time, that you can do such a differential diagnosis. This is an inter-disciplinary job and not the responsibility of a GP.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
It's possible that SIBO is just a correlating condition. It's possible that the real pathology of these case reports isn't known and that SIBO is just the first-best explanation because GI diagnosis has become common and probiotics have become a profitable market.

It isn't just these case reports though. It's a universal experience with all specialists in treating SIBO. They find fatigue to varying degrees, often debilitating, brain fog, mood disorders, anxiety, depression, aches and pains, food sensitivities and allergies, etc.

There are also several leading ME/CFS researchers that have said they think ME/CFS starts in the gut. Proving it on a biochemical, immunological level though, is anything but easy.

This is a quote from Dr.Michael Ruscio, a specialist in treating SIBO-

Fatigue

Of all the symptoms of SIBO, fatigue is often the most debilitating and frustrating.

There’s plenty of anecdotal evidence to suggest that fatigue is common for SIBO patients — I observe this in the clinic all the time. But, it’s important to always check clinical observations against science. Unfortunately I haven’t found any studies that investigate whether SIBO causes fatigue, so there is simply a lack of research information in this area.

However if we look at studies into other gut conditions, some associated with SIBO [6, 7], we see a clear pattern of fatigue across gut conditions.

For example, one study found fatigue was very common in patients with irritable bowel syndrome (IBS), and it was associated with poor quality of life [8]. A meta-analysis of 17 studies found more than 50% of IBS patients have fatigue symptoms [9].

A very large study into non-celiac gluten sensitivity found lack of well-being and tiredness were reported as the most common symptoms after bloating and abdominal pain [10]. Sixty-eight percent of gluten sensitive individuals reported lack of well-being, and 64% reported tiredness.

Fatigue is also a symptom in nearly 50% of patients with inflammatory bowel disease (IBD) according to another review [11]. This includes patients with Crohn’s disease and ulcerative colitis. One survey of IBD patients found lack of energy was more burdensome than digestive symptoms [12].

Gut treatments have also been shown to help with fatigue:

Treating leaky gut reduced fatigue and other symptoms in patients with chronic fatigue syndrome [13].
A low FODMAP diet improved fatigue in patients with IBS and fibromyalgia [14].

Again, my clinical experience is very similar — patients often tell me they got their energy back after improving their gut health.

So, while we wait for more research specific to SIBO, fatigue can be associated with gut conditions in general.

He also talks about how SIBO causes immune system activation and chronic inflammation that causes these symptoms.

Immune System

The health of your digestive tract and the health of your immune system are closely linked. Unbalanced gut bacteria activates your immune system. In fact, your small intestine contains the greatest density of immune cells in your body [29]. A chronically over-activated immune system leads to inflammation and immune reactions [30, 31].

image1-1024x1024.jpg

Inflammation

As a result of gut dysbiosis, your over-reactive immune system produces inflammation. Chronic inflammation is now understood as the root cause of many health conditions [32], both minor and life-threatening. The long list includes rosacea [33], cardiovascular disease [34, 35], and Parkinson’s disease [36] — conditions that have been associated with SIBO in research [37, 38, 39].

https://drruscio.com/sibo-fatigue/

Again, these symptoms are found routinely by specialists in treating SIBO. When effectively treated, patients symptoms of fatigue, brain fog, anxiety, joint pain etc. are usually are much milder or gone completely.
 
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nerd

Senior Member
Messages
863
They find fatigue to varying degrees, often debilitating, brain fog, mood disorders, anxiety, depression, aches and pains etc.

You can find correlation studies of the GIS with these symptoms. You can find correlation studies of CFS with these symptoms. The difference, I think, is PEM. Is there a significant subgroup of SIDO/GIS patients who experience verifiable PEM? Does the majority experience PEM? Only if it is the majority, you could count SIDO as a confused CFS/ME diagnosis in general. If it is a subgroup of SIDO patients, and as I've explained, I assume that there is a subgroup, then the observation would be a lack of differential/co-diagnosis.

You can find so many new studies on the GIS and what risks the microbiome can cause, especially immunologically-related, e.g. on cancer and auto-immune diseases. The GIS has been overlooked for many years and attributed to naturopaths and even homeopaths. But the microbiome is not in a one-way relation that you could attribute all causality to it. Genotypes and the metabolism also influence the microbiome just as the microbiome influences the metabolism and immune system. If exercise a lot, your microbiome will change even without a diet change. The same counts for vitamins, some of which are metabolized by the sun, and the same counts for stress. Pathogens can also alter the microbiome unnoticed.

I'm sure you know this. Correlation and causality always have to be differentiated. I doubt that SIBO treatment can be causally translated as a CFS/ME treatment. It has value as a supportive treatment to compensate the progress and symptom severity, just as different supplemental vitamins. That can be applied to chronic conditions in general because the weight of deficiencies really comes to bear once you have inflammation, etc. But it doesn't mean that you can expect to treat all these chronic conditions. You would be surprised how common brain fog, mood disorders, anxiety, depression, aches and pains are with autoimmune diseases, especially in the rheumatic field.
 

Rufous McKinney

Senior Member
Messages
13,251
There are also several leading ME/CFS researchers that have said they think ME/CFS starts in the gut. Proving it on a biochemical, immunological level though, is anything but easy.

Its so frustrating to be the lifetime victim of an running assault that you can't entirely grasp what happened.

Attempt to be brief- I've been sick since I was 1 year old, allergies started it, the gut was a mess as a child, later (colitis attacks we called it). I recall horrific stomach flus as a child, food poisonings some of it probably.

Then the Eppstein Barr over and over. So my basic life was depreciated health wise, but I was "mild" whatever , and the Eppstein Barr got me somehow, but I managed to- work full time, do physical stuff even. I could hike all day if I wanted. Sure I was tired, but it could still be done.

so then the SEVERE stressors hit (wildfire, house burnt to the ground, career terminated abruptly, retired, never saw a coworker again). My life went KABOOM. literally. (still is, pretty much, nothing like its prior self).

About 3 months later: I have severe gastroenteritis that nobody will diagnose, it had happened a couple of times before (prior years), but it was- a near death experience. Then it happened again 2 months later, I went to the ER, I received no real diagnosis, and: I have FAR FAR WORSE ME ever since.

Now I have ALL the classic symptoms. Including big time neurological (passing out, unable to lift an arm, unable to process visual inputs, tachycardia).

so what happened to me? i went from mild, functioning for a lifetime (and YES, I'd describe that I have IBS-d issues)...but not every minute every day.

I"m back on my digestive herbs which help, after being off for a while. And I'll just eat some toast, anyway.
 

ljimbo423

Senior Member
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Location
United States, New Hampshire
so then the SEVERE stressors hit (wildfire, house burnt to the ground, career terminated abruptly, retired, never saw a coworker again). My life went KABOOM. literally. (still is, pretty much, nothing like its prior self).

About 3 months later: I have severe gastroenteritis that nobody will diagnose, it had happened a couple of times before (prior years), but it was- a near death experience. Then it happened again 2 months later, I went to the ER, I received no real diagnosis, and: I have FAR FAR WORSE ME ever since.

Something similar happened to me about 20 years ago. My ME/CFS was fairly mild and was jogging 15-20 minutes every other day and had a fairly normal life.

I got hit with life changing bad news and went down hill fast from there. Before I new it, my ME/CFS was severe and I was mostly bedridden!
 

nerd

Senior Member
Messages
863
If I, or anyone, could prove causality of ME/CFS this would be a very different conversation.:lol: What I am showing is a strong correlation.

Well, there is temporally causal evidence. I remember a mid-size observational study on childhood-onset EBV and lasting subsequent chronic fatigue. Similar observations can be made for COVID-19. But for some reason, they don't dare to classify it as "CFS/ME" but rather speak of "chronic fatigue" and of "long haulers". It depends on which CFS/ME guidelines you apply, and you could interpret these cases as CFS/ME.

I have severe gastroenteritis that nobody will diagnose, it had happened a couple of times before (prior years), but it was- a near death experience.

I share similar experiences. EBV made me fatigued but gastritis/gastroenteritis/food poisoning caused the most-severe issues when you would normally call the ambulance. Since the first incidence of this kind, I have intolerances and metabolic susceptibility to diet. I think this caused the first severe reactivation of EBV, which felt like an endless Influenza infection. No GP listened to me though. My primary GP immediately assumed I was psychosomatic and that only had a cold. No tests were done for months. Not even essential blood markers.

so then the SEVERE stressors hit (wildfire, house burnt to the ground, career terminated abruptly, retired, never saw a coworker again).
EBV always remains latent after the initial infection. The more severe and longer the infections so far, the greater the latent EBV reservoir. Severe stressors suppress the immune system and this is used by latent EBV as a signal for reactivation. Another reactivating signal is hypoxia (10.1371/journal.ppat.1006404). It doesn't mean that EBV is really the sole reason but it might be a contributing factor.
 

LINE

Senior Member
Messages
832
Location
USA
CFS/ME research is certainly a gray area. Every point can be both supported and argued. The only thing that matters is that you provide the right treatment and get the result. If I don't get the result, then I modify my theory and reapply, this method has been successful for me.
 
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Messages
70
I got hit with life changing bad news and went down hill fast from there. Before I new it, my ME/CFS was severe and I was mostly bedridden!


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4305729/ -
Effects of psychological stress on small intestinal motility and bacteria and mucosa in mice

RESULTS: Small intestinal transit was inhibited (39.80±9.50% vs 58.79±11.47%, P<0.01) in mice after psychological stress, compared with the controls. Psychological stress resulted in quantitative alterations in the aerobes (E. coli).

There was an increase in the number of E. coli in the proximal small intestinal flora (1.78±0.30 log10(CFU/g) vs 1.37±0.21 log10(CFU/g), P<0.01), and there was decrease in relative proportion of Lactobacilli and E. coli of stressed mice (0.53±0.63 vs 1.14±1.07, P<0.05), while there was no significant difference in the anaerobes (Lactobacilli) between the two groups (2.31±0.70 log10(CFU/g) vs 2.44±0.37 log10(CFU/g), P>0.05).

D-xylose concentrations in plasma in psychological stress mice were significantly higher than those in the control group (2.90±0.89 mmol/L vs 0.97±0.33 mmol/L, P<0.01).

CONCLUSION: Small intestinal dysfunction under psychological stress may be related to the small intestinal motility disorder and dysbacteriosis and the damage of mucosa probably caused by psychological stress.
 

nerd

Senior Member
Messages
863
CFS/ME research is certainly a gray area. Every point can be both supported and argued. The only thing that matters is that you provide the right treatment and get the result. If I don't get the result, then I modify my theory and reapply, this method has been successful for me.

Indeed! We have to stay open-minded. In fact, I have my own theory that a subgroup of MG (Myasthenia Garvis) patients is confused with CFS/ME, especially seronegative ones. I only have anecdotal evidence and a theory, though. Unlike GIS treatment for CFS/ME, a certain type of MG pathology and therapy (i.e. thymus-focused) has never been studied. There isn't even a correlation study on thymus hyperplasia with CFS/ME. The presumed pathophysiology of both conditions is pathogen-induced, especially by herpes viruses such as EBV. I might explain this in another post eventually, why I think this hypothesis should be evaluated.

I'm only mentioning this here to show that there are many other theories and conditions which share these symptoms, even including PEM, tachycardia, immune dysfunction, etc. But our current medical research system isn't really organized to cross-evaluate data with similar/coinciding conditions. For guidelines to include most differential (co-)diagnoses, such studies are urgently necessary. Instead, every department and expert center does their own thing and drives their own specific theory further. No wonder there isn't any consensus with CFS/ME. If you meta-analyzed all of the available data, you might be able to exclude certain things such as psychosomatic illness because all physiological studies contradict this theory if accumulated. Everyone assumes that their own theory is the right one and the others are wrong. Similar things can be observed with COVID-19 research.
 

kangaSue

Senior Member
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1,851
Location
Brisbane, Australia
A number of studies indicate that bile salt hydrolase activity affects both the host physiology and the microbiota and it is strongly suggested that bile salt hydrolase could play an important role in the colonization and survival of bacteria in the gut. That can mean also having an involvement in SIBO too and may be an overlooked element in cases of recurring SIBO.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7284594/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7891722/
https://pubmed.ncbi.nlm.nih.gov/30131136/
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
For me, all factors are beginning to point to a gut/ microbiome problem. That is where my illness seemingly started.

These are thing I’ve chased, and what I think I know...

- EBV is a wild card because of my crazy-high level of antibodies, but no active infection ever detected All other virus/ infection markers test negative
- Neurological damage from past infection is a possibility, but unproven and doesn’t explain the variation in symptoms
- Taking antiD’s had a slight positive/ severe negative effect on symptoms. I am fully convinced antiD’s have a
direct effect on gut bacteria
- Abnormalities in blood and iron levels that cannot be explained (malabsorption?)
- Variations in symptom severity with no explanation
- Bowel movements (constipation/ diarrhea) that correspond with lesser/ worsening symptoms

What I’ve done recently,
- Yeast/ candida/ parasite culture stool test, negative, but slight elevated enterococcus
- Yeast/ candida blood test, negative, but high allergy to molds
- Endoscopy, mild gastritis
- Comprehensive stool test (GI map), waiting for results

What I’m working on,
- IBS Smart test - detects food poisoning antibodies
- Triple gas sibo test - Trio Smart

I have a new gastrologist also suspicious of sibo, but didn’t feel the testing was worth the trouble. Gave me a 14 day supply of xifaxan. On hold for now.

I realize this all may go nowhere, but I’m going to chase it down to see where it leads.
 

ljimbo423

Senior Member
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4,705
Location
United States, New Hampshire



@EddieB You or others might be interested in this. If you can't listen to this at 5:00. All you need to do is sign up for it and they will email you a replay.

This live call is today at 5:00 Eastern time in the United States. Which is 3 hours from now.

REMINDER: Dr. Mark Pimentel, MD will be joining me for a LIVE call TODAY, March 15th - and you're invited to come learn with us! (100% free!)
Dr. Pimentel is the top research doctor in the fields of IBS (Irritable Bowel Syndrome), SIBO (Small Intestine Bacterial Overgrowth), and other functional gut disorders. He spends his days working tirelessly in the Pimentel Laboratory at Cedars-Sinai Medical Center in Los Angeles.
Dr. Pimentel is the man we have to thank for....


  • Sequencing the small intestine microbiome
  • Identifying post-infectious IBS (aka IBS caused by past food poisoning) as not only REAL, but is an autoimmune reaction
  • Creating the blood test to diagnose post-infectious IBS (called IBS Smart)
  • Separating IMO (intestinal methanogen overgrowth) as a "separate" condition from SIBO
  • Pioneering treatments for SIBO, including Rifaximin
  • Creating the Cedars-Sinai low-fermentation diet that has helped thousands of people find relief
  • Creating the first breath test for all 3 gases: methane, hydrogen, and hydrogen sulfide (called Trio Smart)
I could go on, but suffice it to say Dr. Pimentel is a pioneer, and I am extremely honored to have the chance to sit down and interview him again.

I expect he will be sharing some juicy new information and teasers ahead of some expected BIG reveals at Digestive Disease Week (DDW) coming up in May. In particular, I will be asking about the new 3-gas SIBO breath test for hydrogen, methane, and hydrogen sulfide.
If you are interested in truly cutting-edge, insightful information, you do NOT want to miss this!

We're starting soon - get ready to join us!

TOPIC: Dr. Mark Pimentel joins the SIBO SOS Community for a Live Call on SIBO, IBS, and the New 3-Gas SIBO Breath Test
WHAT: Free Presentation
WHEN: TODAY, March 15th at 5:00pm Eastern
WHERE:
You have 2 options to join us:

Option 1: Join via Facebook Live in The SIBO SOS® Community Group on Facebook (just request to join if you haven’t already - it’s a private group, but anyone who is interested is welcome to join!). Once you've joined the group then return to the group on March 15th at 5:00pm Eastern the live stream will begin automatically (refresh your browser if you do not see the post with the LIVE icon.

Option 2: Join via Zoom - Use this link: Click here to join.

Can't make the live session? We will send you the replay after the event so you can get caught up!
 
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EddieB

Senior Member
Messages
604
Location
Northern southern California
so then the SEVERE stressors hit (wildfire, house burnt to the ground, career terminated abruptly, retired, never saw a coworker again). My life went KABOOM. literally. (still is, pretty much, nothing like its prior self).
I got hit with life changing bad news and went down hill fast from there. Before I new it, my ME/CFS was severe and I was mostly bedridden!
CONCLUSION: Small intestinal dysfunction under psychological stress may be related to the small intestinal motility disorder and dysbacteriosis and the damage of mucosa probably caused by psychological stress.

I think this speaks volumes. A previous marriage/ divorce from hell, about the time I first became ill, probably did me in too.
 

nerd

Senior Member
Messages
863
EBV is a wild card because of my crazy-high level of antibodies, but no active infection ever detected All other virus/ infection markers test negative

This is rather speaking for an EBV-induced pathophysiological process than against. Active infections of EBV are usually only remarkable during the first infection. PCRs and IgM VCA are only sensitive to initial infections (10.1111/j.1699-0463.1996.tb00737.x). The more sensitive early antigen (EA), however, isn't usually tested, at least not in Germany.

But an acute chronic reactivation per se isn't really the working theory for causality. Other likely EBV-inducable diseases with more research can show us more insight into the long-term pathophysiology of latent EBV, and it's always latent after the first infection. These are MG, SLE, and MS, for instance. It's the antigens (e.g. EBNA-1) and the residual EBV-modulated proteins (e.g. EBI 2) within the lymphocytes that participate in the ongoing pathology of these diseases, in addition to inherited susceptibility (10.1556/EuJMI.1.2011.4.2; 10.3389/fimmu.2020.623944). If there is something active, then it's localized within the lymphoid system (e.g. in the thymus).
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I think this speaks volumes. A previous marriage/ divorce from hell, about the time I first became ill, probably did me in too.

Stress, in various forms, are often a precursor to ME/CFS. If chronic stress from common life experiences can trigger ME/CFS. Imagine how stressful weeks or months of an EBV infection would be on the body and gut. EBV sometimes triggers ME/CFS.

Although not all people get ME/CFS after infections, many of us do. ME/CFS researcher Derya Unutmaz says this-

Putting the patient back together

Unutmaz hypothesizes that ME/CFS is caused by a change in a patient’s microbiome after an infection.

Our microbiome consists of our microbes—trillions of bacteria, viruses, and fungi that are living in and on our bodies. A misbalance in our microbes can change the makeup of our entire microbiome, which triggers an inflammatory response and causes the immune system to perceive that there is still a danger in our bodies even when an infection is long gone.

Unutmaz and his collaborators are approaching ME/CFS by examining the unique immune profiles – the dozens of subpopulations of immune cells that are unique to every person, shaped by medical history, past infections, microbiome, diet and more - of more than 100 patients and healthy controls.


“We’re sequencing thousands of species of bacteria. We’re determining hundreds of different populations of immune cells in the same person. We’re also analyzing their metabolism and thousands of different metabolites in their blood. We’re trying to put the patient’s biology back together,” explained Unutmaz.


Using an integrated analysis that requires an incredible amount of computation and technology, he and his group are combining this data with clinical data in order to look for biomarkers of the disease.


Unutmaz says they are already seeing profound differences in the immune systems of ME/CFS patients compared to controls. “We’re very excited about that,” he said. “In my mind, there’s no question that there’s an immunological basis for this disease.” Finding a biological basis for the disease, Unutmaz, said, would enable a physician to easily diagnose ME/CFS by identifying the corresponding biomarker.

https://www.jax.org/news-and-insights/2018/june/decoding-chronic-illness
 
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