“B. miyamotoi is a prime candidate to be the major chronic infection underlying ME/CFS”
The fifth in a series of blogs reporting on the 2022 IACFS/ME Conference focuses on an intriguing possibility: that heretofore unknown infection is present in most people with chronic fatigue syndrome (ME/CFS).
- Systrom’s Keynote Address Kicks off IACFS/ME ME/CFS and Long-COVID Conference
- The Hugely Predictive Factor for Long COVID…is also found in ME/CFS and Fibromyalgia: the IACFS/ME Conference II
- Myoglobin, Platelets, and Monocytes, Oh My: The IACFS/ME Conference Review #III
- Could Core Issues in ME/CFS Be Cropping Up? Report from the IACFS/ME Conference #4
Talk about a jaw-dropping statement. With the exception of Dr. Chia’s work on enteroviruses and Ariza’s work on the Epstein-Barr virus, most researchers have pretty much given up on finding “the chronic infection” underlying ME/CFS. Repeated failures to find evidence of a pathogen have led to the conclusion that while ME/CFS can be triggered by a variety of infection, the pathogen is likely long gone. With the emergence of long COVID, though, the idea of viral persistence has caught hold and the question is back – could a persistent pathogen or bits of a pathogen be causing ME/CFS?
It got a bit more interesting when De Meirleir looked where no one has looked before – at tick-borne pathogens and at ones other than the Lyme disease-causing bug (Borrelia) at that. Plus, he used a new testing approach using bacteriophages to find them.
My numbers may not be correct, but the gist is that in this rather large study, a very large percentage of ME/CFS patients tested positive for B. miyamotoi while few of the healthy controls did. My jumbled notes stated that 81% of people with ME/CFS tested positive while 20% of the healthy controls did. In contrast to the high percentage of ME/CFS patients diagnosed with B. miyamotoi, few were found to have B. burgdorfii – the bacteria that causes Lyme disease. That last finding jived with the results of a 1999 study that failed to find evidence of a hidden Lyme infection in ME/CFS and a recent study that failed to much Lyme disease in people with ME/CFS, fibromyalgia, migraine, and related diseases.
If my notes are correct, the study consisted of patients from Belgium and the Netherlands, but De Meirleir reported getting similar results from patients from South America, Russia, Asia, and North America. He thinks B. miyamotoi may be a big deal in this disease.
B. miyamotoi was first identified in Japan in 1994 and is now known to be present in ticks with ranges across Russia, Europe, and the west and east coasts, and the midwest of the U.S. Just how common it is, is not clear, however, as few studies have assessed its prevalence.
B. miyamotoi is spread by the same Ixodes ticks that spread Lyme disease (Borrelia Burgdorferi) but is more closely related to the bacteria that cause tick-borne relapsing fever. The disease it can produce, “Borrelia miyamotoi Disease” (BMD), generally produces fever and flu-like symptoms but can also produce neurological/musculoskeletal pain, cognitive dysfunction, sleep disturbance, and fatigue; i.e. similar symptoms to ME/CFS.
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The promise of bacteriophage testing rests on the fact that each species of tick-borne bacteria such as Borrelia carries a distinct package of phages – simple life forms that live off the bacteria. They are reportedly 10-100’s more common than the bacteria themselves.
Because each Borrelia bacteria reportedly can carry multiple phages that are unique to it, theoretically, it should be easier to pick them out using PCR than searching for the bacteria itself. Thus, bacteriophage tests should be more effective at uncovering the lower levels of infection that occur early – allowing the pathogen to be treated more quickly.
Plus, some evidence suggests that the prophages can be released from the cell following stressors such as antibiotics – leaving them even easier to find. Still, while bacteriophages have been known to exist for a long time, it’s only recently that they’ve been used to test for Borrelia bacteria.
Dominic recently reported for Health Rising on his wife’s use of a bacteriophage test.
As R.E.D. Labs has built up their bacteriophage testing approach since 2019 the interest in bacteriophages in the scientific literation – while never particularly high – and may even be declining. Only two studies were produced in 2021, with the previous ones showing up back as 2017. I could not find any studies that compare standard bacteria testing to bacteriophage testing.
A recent study by an outside group, though, asserted that bacteriophage tests for Lyme disease (LD) allow for earlier detection and “could deliver a step-change in the detection of LD.” The authors also noted that bacteriophage analyses are “highly applicable to bacterial identification in general”.
An opinion paper published by the Journal called the study “promising” but cast doubt on its methodology, and citing its “flawed circular reasoning and over-interpretation”, stated that:
“The aforementioned considerations cast substantial doubt on the reliability of the results, but—when interpreted with caution—do not undermine the value of the authors’ hypothesis. Unfortunately, the conclusions drawn by the authors from the results are inappropriate. The authors state that their assay can distinguish early LB, late LB, and HVs. These conclusions are not supported by the data.”
Ileocecal Valve Syndrome?
Dr. De Meirleir reported he’s found increased levels of toxins called lipopolysaccharides produced by bacteria in people with ME/CFS. Then, in one of the most interesting parts of his presentation, he focused on the ileocecal valve that separates the small intestine from the large intestine. I didn’t write down the possible connection between B. miyamotoi and the ileocecal valve, but the last time I remember hearing about it was decades ago from Dr. Cheney who pointed to a spot on my lower right abdomen which he said was almost always painful in ME/CFS. (Mine is).
The ileocecal valve stops fecal matter from backing up into the small intestine. Ileocecal valve syndrome is a condition featured on alternative health websites that’s been called the “great mimicker”. The valve can either get stuck open or closed and can reportedly cause a witch’s brew of symptoms including fatigue, abdominal pain, allergies, heart palpitations, and many more. Many things can purportedly cause it, including bacterial and viral infections, parasites, and Candida. A wide variety of general treatments are used, including this one:
Pressing the ileocecal valve area with the flat of your hand (all fingers) and maintaining pressure there for 5 mins/day for 4 weeks, then continuing this technique once a week for several months.
- Many researchers have given up the idea that a chronic infection is causing chronic fatigue syndrome (ME/CFS) but long COVID studies suggest that a pathogen (pieces of it) could be lurking.
- That idea got a bit more life in ME/CFS when Dr. De Meirleir looked where no one has looked before – at tick-borne pathogens and at ones other than the Lyme disease-causing bug (Borrelia) at that. Plus, he used a new testing approach using bacteriophages to find them.
- Bacteriophages and simple life forms that have attached themselves to bacteria. Because they are reportedly specific to bacteria and exist in a variety of forms, they potentially provide an easier way to diagnose bacterial infections.
- R.E.D. Labs has been a leading proponent of bacteriophage tests. Few studies, though, have assessed their effectiveness.
- Dr. DeMeileir reported that a high percentage of people with ME/CFS harbored, not Lyme bacteria, but Borrelia miyamotoi bacteria – which is spread by the same ticks that carry Lyme and other pathogens. A much smaller percentage of healthy controls appeared to be infected with B. miyamotoi. Increased rates of bacterial toxins were also found.
- De Meileir also pointed to an issue with the ileocecal valve which keeps gut contents from backing up into the small intestine. Years ago, Dr. Cheney told me that many people with ME/CFS experience soreness at the bottom right abdominal area where the valve was found.
- While the idea of a common infection underlying ME/CFS is enticing, given the many tests from smaller labs that have failed or been brought into question over time (RNase L, XMRV, hydrogen sulfide, EpicGenetics, CellTrends POTS test) caution is warranted until these results can be validated.
We’ve learned that we have to be particularly careful about new tests coming from smaller labs. The RNase L test R.E.D. Labs created and marketed to diagnose ME/CFS is no longer being used. The validity of CellTrends tests for POTS, and perhaps ME/CFS (blog coming up), and the EpicGenetics blood test for fibromyalgia has been questioned.
R.E.D. Labs was a prominent testing portal for XMRV tests. According to several reports, in 2010, De Meirleir reported, using the Whittemore Peterson Institute, which turned out to be contaminated, to test his samples, that he’d found XMRV in ME/CFS patients from all over Europe, that it had produced an immunological signature similar to that of symptomatic HIV patients, and that the “long agony” for ME/CFS patients was over. He wasn’t the only one to think so, but XMRV did not pan out.
In 2012, De Meirleir reported that he’d produced a diagnostic test for ME/CFS and held a press conference, “Research on Extremely Disabled Patients Reveals the True Nature of the Disorder”, in which he stated that hydrogen sulfide was the culprit. R.E.D. Labs was the sole distributor of the test which is no longer being offered.
R.E.D. Labs also provides many other tests including PCR, immune, intestinal and other tests, and Dr. De Meirleir – a stalwart supporter of people with ME/CFS going way back – was probably the first researcher/doctor, for instance, to really focus on the gut and has made many contributions including video’s, research papers and collaborations with doctors (Canadian Consensus Criteria, International Consensus Criteria) to ME/CFS over the years.
According to my notes, De Meirleir stated that B. miyamotoi is a “candidate” for being the major infection in ME/CFS”; i.e. he acknowledged that more testing needs to be done. Let’s hope that it gets it and doesn’t suffer the fate of Dr. Chia’s enterovirus findings – which have received no, or almost no, independent testing.
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“Pressing the ileocecal valve area with the flat of your hand (all fingers) and maintaining pressure there for 5 mins/day for 4 weeks, then continuing this technique once a week for several months.”
Where exactly is this located? And if you’re not pressing in the right place will it do more harm?
Nevermind, I think I found a good source for info about it: https://kinesiology.co.uk/icv-health-wellbeing/
I have pain to the left of the hipbone, I guess it is. There’s a tender spot there that I don’t find on the left-hand side of my abdomen.
“My jumbled notes stated that 81% of people with ME/CFS tested positive while 20% of the healthy controls did.”
Almost exactly Chia’s numbers:
“135/165 (82%) biopsies stained positive for VP1 within parietal cells, whereas 7/34 (20%) of the controls stained positive (p< or =0.001)"
Cort, the words most appealing to me in this text are these two: “Caution Warranted”.
If this was to fit into any plausible hypothesis it would be the re-activation paradigm:
significant immune stimulation (e.g. from acute infections) can, in predisposed individuals, cause lasting immune dysfunction, which in turn allows for re-activation of endogenous microbes – which in turn can wreak havoc on many organ systems, if directly or indirectly (e.g. through autoimmunity, mitochondrial/peroxisomal/metabolic dysfunction, oxidative/nitrosative stress etc…). Now while re-activation of latent microbes may affect only one species of microbes (let´s say EBV or HHV1 or an enteroviral species) it may actually be polymicrobial in nature – i.e. a whole orchestra of microbes may act up. Possibly, severity of ME/CFS may then depend on the players in this orchestra and how loud they play, i.e. their microbial load. This is a plausible model, because what is described as clinical consequences of EBV reactivation pretty much also applies to what is described for reactivation of toxoplasma gondii – or borrelia, for that matter. Possibly, B. miyamotoi is just another player in this orchestra that happens to have been detected by a closer look.
More like LPS in general as a driver of inflammation and involvement in ME/CFS.
Under stress, more LPS makes it into the blood stream [i.e. “leaky’ gut]. This burdens the liver, activates the immune system [acute phase].
Since Me/CFS = a reduced state with reduced capacity to produce energy, any little stimuli can become a stressor
Then it can be a continual release of LPS into the bloodstream, depending on how hypothyroid the person is and the stressors, etc.
I often wondered in regards to auto-immunity – instead of this model of the body attacking itself, there is something there that is eliciting this response – it’s the scientists/docs that don’t ‘see’ it. For example, LPS circulating around the body, where it shouldn’t be.
There is not one specific article I can link you to, rather, let your curiosity guide you and spend some good quality time reading many, to form a bigger picture.
I did learn about endotoxin by reading Ray Peat’s articles. That is a pretty good place to start – they usually have tons of referenced articles listed too.
Take something like this:
Makes me wonder about ‘hEDS’, which is not really one the EDS types [there is no genetic cause to it], and if you couple that with a more recent paper that looked at using doxyciline in hEDS tissue [in vitro] and it NORMALIZED the extracellular matrix.
The nugget is the increased LPS. It’s come up before.
The thing is if you know nothing about LPS, and are not moved to look into it, you’ll think nothing of this finding.
Yet there it is staring back at every reaearcher, under their noses. The golden nugget.
LPS is a product of gram neg bacteria, I do not see how it would relate to viral processes like reactivation of the endogenous virome. But literature references are always welcome! Thanks
Ooops, my comment went in the wrong place, it was meant yo go under Herbert’s last comment.
Indeed, Herbert. It also fits the Itaconate shunt hypothesis, which would mean that the innate immune system is permanently on in some cells to fend off such infections/reactivations. (which then leads to a bypassing of the TCA cycle and efficient ATP production).
Oh wow! One of first weird symptoms was that lower right abdomen pain! I had been to the ER multiple times over the years for it thinking I had gallstones, kidney infection, ovarian cyst, etc.
I have never been tested for Lyme because I always felt like I was never exposed being that I did not live in a place where Lyme is prevalent…so I really never was one to think my ME/CFS would have been caused by Lyme for myself. The notion that a bacteria could perhaps be a cause – or even a virus (post viral like covid, etc) is probably more likely. For me, looking back many of my issues seemed to start after I developed a case of shingles in my early 30’s. I then went on to get shingles multiple times over the next 15 years. Perhaps shingles was just the trigger for me? Anyways – very interesting research! I would be curious to get tested for that bacteria just to see though.
A shout-out to Dr. Chia for his enterovirus work. I take his Equilibrant herbal product 3 tablets 2 x a day, and I no longer get Coxsackie B relapses (I do test positive for several Coxsackie B enteroviruses by a blood test but would have never done the assay were it not for him). I have tried going off Equilibrant, but relapsed so I just stay on it. A word of caution: start very slowly and increase by .5 tablets. The herxheimer reaction is intense. For me, the hallmark of a Coxsackie B relapse is sore throat and digestive upset, followed by pretty severe malaise, depression and jacked-up PEM. It can last up to 2 weeks. And yes, per Herbert above, many patients have high titers of EBV, HHV-6 and CMV, so many known (and possibly unknown) reactivating infectious agents could easily be the underlying cause of ME-CFS.
Flabbergasted! I have had unexplained lower right abdominal pain for YEARS, and had not until today ever read anything referring to it in ME/CFS. I forwarded the article to my doctor. She has ordered several test over the years to try to narrow down what’s causing my pain, all off which come back normal. I finally gave up and had commented to her that it must be some odd trigger point internally. Very validating to find out others have it, and a name for it.
Me too. For me that was another validation really of Cheney’s diagnostic prowess that he picked up on that. As soon as he pressed on it I went “ow”. Still there decades later.
Just back an hour ago from the hospital for yet another test (barium small bowel) for unexplained lower right side pain. I have long tied that pain to bowel cycles, and the stuck sphincter fits my symptoms perfectly. I will definitely try the daily pressure treatment. Is there something to read about how and why that works, and how bacteria could cause the problem?
Hmm. I’ve maybe had one tick bite in my life as a child. My symptoms came on hard and heavy after H1N1, then titers for EBV were through the roof for years. I think it’s a stretch that 80% of us were lucky enough to be bitten by an infected tick. It seems more likely that ME/CFS is about predisposition, the fuel is there, but what sparks the fuel can be a dozen different things, bacteria being just one. (I also had tons of antibiotics in the years prior to getting really sick, and I think the damage they did to my gut was part of the fuel in my case)
You don’t need to be bitten to contract it, it is transmitted sexually, via utero, blood transfusion, or some vaccines like HPV
To be clear, are you suggesting that some vaccines carry the Borellia burgdorferi?
It says on the leaflet that goes with gardisil that there is 1% change of contracting Lyme disease so I assume it is made on the virus cell line or they have repurposed lymerix vaccine that was taken off the market due to people contracting Lyme disease from it
I have been complaining about a lower right pain in my abdomen as long as I can remember, but it’s only intermittent and my doctors have shrugged it off. I am 73, acquired ME at age 42 after a trip to rural Pennsylvania. I was very suddenly sick with what felt like a bad flu that kept pulsing off and on, which resulted in my permanently worsening ME. Then in 2015 at age 65, I found a Lyme rash on my behind which didn’t hurt at all even though it was very large. Neither I nor my doctor recognized it as Lyme at that time, and he gave me Bactrim instead of doxycycline, thinking it was some sort of staph infection. That infection immediately targeted my heart, giving me a permanent heart block requiring an emergency pacemaker, and then over the following months attacked each of my knees, where I went from no pain one day to not being able to walk without crutches the next. The damage affects my knees to this day. A year or so ago, when my salivary glands swelled up, I was diagnosed with Sjogren’s syndrome, which I now believe I had all of my llfe undiagnosed.
After 31 years of this wild ride, I’ve had plenty of time to speculate. I now think my ME was caused by a borrelia bacteria in 1991, and getting a second dose in 2015 caused it to attack my heart and large joints and leave them permanently disabled. Only 1 person in 10,000 will have a permanent heart block from LD. Why me? Is it because I got a double dose of Lyme? And the fact that women are more prone to autoimmune diseases like Sjogren’s, may explain why 80% of the cases of ME are in women. I will definitely give the lower right abdomen press thing a try! Thanks, Cort!
This is a good article about bacteriophages (viruses of bacteria) and how they have evolved with bacteria https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8636187/#:~:text=The%20Borrelia%20bacteriophages%20(phages)%20are,to%20continue%20replicating%20more%20phages.
It discusses Lyme Disease and other Borrelia.
Now my question is..
The article reports that ticks can pass on many different Borrelia. When you get Lyme Disease, could you also get other Borrelia’s and could this be why some people get chronic issues? Yes Lyme Disease goes, but there are other Borrelia we haven’t looked for.
The idea of giving human patients the bacteriophage virus to seek out and kill the Borrelia is exciting.
thank you for the many warnings Cort!!! You know…
In 2001 de meirleir was allready claiming on belgium television that ME/cfs was cureabale…
we are still ill here… I could write so much but i can not hm hm hm…
@konijn: Please speak for yourself and not in the “we” form, because you don’t know what you are talking about…I’m from Belgium too and let me tell you a short little story: one of the latest articles (researchgate) by one of the most famous HIV researchers from Belgium (UZ Gent) was about the translocation of LPS through the gut barrier…when I told her that Kenny De Meirleir told me this in person 15 (!) years ago, she said that couldn’t be the case and DML was a quack…I told this young woman that I find it really weird how intelligent people can be so biased/brainwashed but anyway…It will be exactly the same story with the lyme issues…In 20 years from now the so called “elite doctors/scientists” will proudly explain de Meirleirs work in the media and act is if they did it!
De Meirleir was one of the first to adress this disease and he never stopped searching…He was also one of the first to adress the gut issues and he was one of the first to adress the link with tick-borne infections (long before he made it public)…In een ideale wereld had deMeirleir al lang een standbeeld en U een klets op uw poep gekregen… best regards, Jeroen
in 2001 i walked into the hospital. got antibiotics for antiters for clamidia pneumonia, but had no active infectio but he did not tell me that. Only a few antititers. Soi did not know, trusted him. i got 6 months antibiotics, after 2 weeks i was bedridden, had to take all the time antidiuretics. have gotten from that many many more symptoms and a total decline I do not search and post all the scandals around de meirleir that happened later. search it yourself. about him and later also about his wife, how he did not get to court because the time was past for that, but i would if i could at that time have taken a lawyer to suit him, only that he was so clever to never prescribe the antibiotics himself . not like some others who where sactioned by court. if you are glad with him, got better, cured, are not financially broken like some out of despair, i am glad for you!!! I do not talk bullshit, in those days have heard several people with antibiotics and, noticed that whole the VUB specialists where against him and understood later why, it nearly killed me, my Kalium was to low from it, during the antibiotics i got a real active infection mycoplasma pneumonia, And yes, we are still ill here, maybe you are one of the lucky ones, an exception… but know in breastcancer research, if you take 1000 people, there are allways a few spontaniously recoverys.
ps and you may put the flemmish into english so that others can also read it….
And a half year of antbiotics with diarrhea will shurely be good for the gut!
case for me closed. i need to live with how ill he made me…
I live in New Zealand and like many people here with ME/CFS I never left the country before developing this hideous disease.
And I am pretty sure there’s no Borrelia (B. miyamotoi) here in New Zealand. As no Lyme Disease carrying ticks.
I did a search for it just now, and “Borrelia New Zealand” and “ B. miyamotoi New Zealand “ doesn’t show in any of my internet search results.
I see overseas researchers use “New Zealand rabbits” in B. miyamotoi research as they know they are unlikely to be carrying B. miyamotoi either
So chances are that I and a good amount of other New Zealand ME/CFS sufferers don’t carry B. miyamotoi.
Although I find it interesting that this research is showing 80% of ME/CFS patients carry the bacteria, this seems to be just a correlation, and could just be it’s an opportunist bacteria hanging around in a weakened immune system of those patients.
Unless someone else has evidence B. miyamotoi here in NZ I currently think the finding is no smoking gun
The researchers should do that same test on New Zealanders with ME/CFS, as the results will be much lower, and on those that haven’t traveled overseas non existent.
There are plenty of pathogens that can cause havoc, not sure why researchers try to curve fit one organism as the causative factor.
Also a New Zealander and was also going to point out NZ is Tick free
The First wave of CFS/ME/FM in NZ was in the 80s from a wave of Flu going around at the time ….hence why it was originally called tapanui Flu ,after the first town/area that had the cluster outbreak
That was put down to most liely being Mycoplasma Phnumonia being the Cause ( Walking mans flu) and is a type that “cycles” around the world every 3-5 yrs (from mem) Also the thing i believe caused my CFS in the early 2000s and most likely mums FM back in the late 80s (she was down in the main breakout cluster region at the time)
personally i think its not just one type of viral attack being the issue but any number that have become deep seated
No such thing as tick free, John Hopkins Clinic said they are in every country and every state.
correct we have a couple native bird ticks and one imported cattle tick
BUT There is currently non of the pathogens they can carry which can effect humans EVER been detected in NZ ticks and not a single case of a human in NZ catching anything from tick bites according to the latest NZ Ministry of Health imformation
Reason i said no ticks is because weve NEVER been brought up having to learn about any dangers from them
LOL until your reply i honestly thought we had zero of them in NZ ,because being cat dog bird even pigs calves sheep and a goat owner over the years ,Ticks have never once been an issue 🙂
Lets hope NZ stays that way too
Well, well. That could explain the lower right quadrant pain I have had for a number of years. It comes and goes in severity and can be worse with a very full bladder and constipation. I am going to try some of the massage techniques and dietary interventions. Interesting!
I also find the reference to a chronic infection as a cause of ME/CFS interesting. My intuitive sense of myself leans in that direction. I have been very healthy all my life other than infections of one sort or another – chronic bacterial sinus infection, chronic fungal sinus infection, chronic fungal gut infection, all pretty well resolved now by use of nystatin and a variety of alternative medicines, and ME/CFS/FM which is not resolved, though better than when I first got it. Dextromethorphan continues to be helpful, as is Quercetin and acetaminophen, all, I believe, by reducing brain inflammation.
Thank you for the information.
I never waited for some positive diagnosis, just treat then ask questions later. There are just too many possibilities especially with subtypes.
A subtype is a variation of a pathogen that looks similar under the microscope but has variations in the DNA – why does this matter one would logically ask, different subtypes have different properties e.g., some may respond to substance 1 but not to substance 2. Christian Stensvold PhD has good explanations on his blog concerning blastocystis hominis. There have been ongoing arguments about the pathogenic nature of BH until they discovered subtypes.
I have done a hunt and peck method of treatment which has worked.
please tell me, what is the hunt and peck method, which healed you from bh?
Not so easy to put into this comment section. The first comment is that I would never assume that BH is the only pathogen that can cause ME. In my case it was a protozoa parasite.
The second point is that eradication can come from many sources. For instance, I am a believer in ozone therapy which I self-administer. Proponents of ozone believe that it can handle every pathogen around which I do not believe.
However, I use a few other strategies such as some specialized botanicals that serve as antibiotics. Stephen Buhner and Byron White type of strategies.
Kenny deMierlier ….. 🙄
Just the mention of his name is enough to trigger some of us that have been around for a long time!!
Yeah…. Sorry Cort, not impressed by this piece, very skeptical, especially anything that is promoted by deMierlier
Yea, I’ve seen him twice and spent a great deal of money on his tests only to basically be left in the dark.
Are the phages that infect B miyamotoi DNA or RNA phages? Ron Davis looked very hard for DNA viruses but couldn’t find any. But he didn’t look for RNA viruses (harder to do), I think. I am just wondering why Ron Davis didn’t find this with his testing. Thoughts?
I was wondering the same thing. I really don’t know if that kind of testing should pick them up or not. Hopefully someone can advise.
I applaud Kenny DeMeirleir for continuing to research this nasty condition.
I am a 37 year CFS/Fibro patient. Within the first ten years after I became sick, I had positive reactions to a food allergy test in response to all foods tested (except tomatoes). I also tested positive for Lyme on a test from Florida (that was known for false positives), and borderline positive for Lyme on a test from California. I was also borderline positive on a skin prick test for tuberculosis. If the welt after a skin prick (tuberculosis) test was more than 10 mm two days after the skin prick, the test was considered positive. My welt was exactly 10 mm. However, a day after it was measured it was much bigger. Due to all of these positive or borderline positive results, I suspected that whatever my underlying problem was (or is), it may up-regulate parts of my immune response and/or create a lot of different antibodies (including to every food I eat regularly). As a result, I personally take positive tests (especially for hard to test pathogens) with a grain of salt.
Sounds like the doc has a history of making claims to have THE answer, but never did. Not holding my breath that he’s right this time, but it would be nice if it was that simple.
So often this happen that a researcher overlooks an important finding because he is focused on one that he thinks is more important.
Lipopolysaccharides [LPS] / endotoxins.
Has been implicatrd in so many diseased states. You can look up the scientific literarure.
Everytime we stress our bodies, endotoxins are released into the bloodstream – Me/CFs bodies are stressed very easily. If the flu symptoms are largely caused by endotoxins, then in ME/CFS, feeling often like you have the flu – it may be endotoxins.
The Australian team did a study looking into what gut problems correlate with. From what I remember it was pain. So perhaps more endotoxin, more serotonin, SIBO can have something to do with systemic inflammation and pain.
Dr. Chenney sounds like he was a perceptive individual. And a doctor that listened and BELIEVED his patients.
Yes M, no doubt the gut plays a part in most, if not all, of the dysfunctions found in ME/CFS. It’s like asking which came first, the chicken or the egg? I just don’t know that it’s as simple as a single virus being the answer. Like I said, I hope deMeirleir is right this time.
My kid had debilitating ME/CFS for about five years (14-19ish) and it now seems to be mostly in remission, knock wood. PEM and pain/sensitivities began after an encephalitis followed by a year’s worth of high dose prednisone, and she had definitely had Lyme at least once earlier. Among the million and one things we tried was sending her spinal fluid (by way of Boston Children’s Hospital) to the DeRisi Lab at UCSF, which looks for any unexpected pathogen, even unknown ones. The testing came up empty. So if there was a pathogen it was not in her spinal fluid. Someone doing magnet therapy did “test for” other things with magnets and reported some flavor of Borrelia in other bodily tissues. That magnet treatment did something for her but did not seem to move the needle much over time. FWIW
I have always felt better after antibiotics, especially that starts with a “c” and is used for a chest cold. Not cipro. I was given this years ago so can’t remember. I have told multiple doctors that I felt better on abx and was ignored.
From Nature, October 17
“Endothelial dysfunction in COVID-19: an overview of evidence, biomarkers, mechanisms and potential therapies”
Very Interesting, I too, have the lower right abdomen issues. First off , from what I read this is supposed to be a ‘new’ tick born illness.(?) I have been sick far before the supposed arrival in the U.S.. Which I think I read was 2011? Also, I do remember finding a deer tick stuck to my abdomen several years prior to becoming ill with ME/CFS.(though it wasn’t lyme, i’ve been tested multiple times for that) I can remember feeling pretty shitty (but still a ‘normal’ shitty (just worn down, stressed and very prone to sinus and UTI infections etc for a couple years prior to getting ME. For me , as with so many others, there was a very marked date of illness onset . I mean to the day, where I would say as of that day that I went to the ER , Jan 15, 2006, my life changed forever. I also don’t understand how I could get so very ill from the worst flu ever (respiratory and gastrointestinal) as to end up in the ER in January if it could all be due to a tick bite. Unless the tick bite lay latent until the flu set it off into a horrible cascade of poor health somehow? This is both exciting and really confusing. I do like Dr. Demeilier and listen when he has something to say though, so it will be interesting to hear more on this.
Also, though I liked the video series Dr, De meilier did on me/cfs. I must say I agree with some of the other comments that De meileir has seemed to proclaim to have ‘the’ answer several times before, only to disappoint us….so, yes, I’ll not count on it to pan out. He always does come up with some decent descriptives as far as symptoms go, like the abdomen thing. His videos are interesting and I think it is admirable that he has stayed studying ME with dedication for all these years. I just hope his research won’t dissapoint and will answer some of the questions looming large in my mind (and likely a lot of our minds!)
This website claims 90% of people feel some tendernesswhen that area is pressed. It explains clearly where to find it. https://www.botanicahealth.co.uk/the-great-mimicker-ileocecal-valve-syndrome/
Better website for massage instructions https://drjockers.com/benefits-ileocecal-valve-massage/
Dont seem much to lose from trying this
Yes on the lower right abdominal pain – such a mystery. I’m looking into pelvic venous ultrasound to see if perhaps enlarged/damaged veins are the culprit? Thanks for bringing Iliocecal valve to my attention. Also I have tested false positive to RPR quant blood tests that identify the presence of a spirochete (but doesn’t tell you which one and also doesn’t have a cure) but is slightly interesting data and an easily available test.
The name if this doctor is enough to make our family stop reading. Saw him twice. Thank you very much.
There is now a Doctor in Northern Germany who claims the cause is Toxoplasmosis Ghondi & the test itself is not accurate,
one can be Negative IGG IGM & still have this chronic active infection so he treats now with the symptoms & has full
recoveries, one antibiotic he uses is Clindamycin he also put out a book for Doctors & patients
This nightmare started when I went to a gastro to talk about the pain and constant bloating I was having in my abdomen. I had been trying to figure it out and had tracked it to the IC valve already. He told me it was probably stress. That was around 2003. He was dead wrong. Iv’e had the feeling I have peritonitis several times. That particular feeling was caused by undiagnosed Celiac. It’s what I use to detect that I’ve eaten gluten.
However, the long period of neglect when I didn’t know I had Celaic led to further problems that eventually look like ME now.
Hi Aidan, do you happen to have the name of the doctor. I happen to be on clyndomicin right now for mrsa ( I have had a few bouts over the past 2 years out of nowhere). When I’m on the antibiotics I feel a lot better including CFS but after I stop eventually my symptoms eventually resume to a greater or lesser extent. Wondering if there is a connection. Thx for your help, Amy from Toronto
Thank you so much for posting this! After dealing with CFS symptoms for >2 years, I asked to get tested for B. miyamotoi after reading this post and, sure enough, it came back positive. Got bit by a tick around the time that my CFS symptoms started but, after testing negative for Lymes and other tick-borne illnesses several times, we chalked that up to coincidence. On week 3 of treatment right now and – after a likely herxheimer reaction last week – am feeling much better! Hopefully it holds!