Discussion in 'BioMedical ME/CFS Research' started by Dolphin, Mar 3, 2020.
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Dysbiosis could in theory also result in "something in the blood" that triggers alarm systems, similar to an infection, without anyone able to find an actual infection.
I've been hearing this kind of things for 20 odd years now. There may be something in it but....
I had major issues with IBS since as far back as I can remember. I developed an autoimmune issue very young - months old. I also had some relatively mild allergies. It is possible at some point I was loaded up with antibiotics. I definitely had lots of tonsil problems, so maybe for that?
My father was born in the early 30s. He wouldn't have had access to antibiotics in the early years. He had lifelong IBS problems, but no readily identifiable allergies. He didn't develop ME.
Maybe the IBS we had in common was a genetic quirk? In which case it is nothing to do with whether or not I received antibiotics. Maybe not.
I thought most ME patients tended to develop IBS after they developed ME anyway, not before?
Hmmm... this hypothesis doesn't seem to match my experience very well either. I didn't have an unusual amount of antibiotics growing up. The ME came on suddenly after a virus, and I had no gut symptoms preceding or associated with that. I developed gastrointestinal issues after the ME took hold, not before.
I did get IBS pre viral trigger, but my mum was very much against excess antibiotics and I didn’t have many, and not at all when very young as far as I know. I also grew up on a farm and then in a big garden and played outside all the time. You hear these theories about not getting exposed to germs etc. We had animals too.
I do think the gut is a good place to look though. Mine is certainly a key part of the puzzle.
They found that 65% of people with IBS later went on to get ME/CFS, as defined by the ICC.
So this clearly shows prior IBS is a major risk factor for developing ME/CFS.
They also found that 86% of IBS patients had extensive antibiotics as a child. So:
Extensive childhood antibiotics ➤ IBS ➤ ME/CFS.
Just realized these figures do not add up: the prevalence of IBS in the general population is estimated to be between 10% and 20%. So if 65% of those with IBS go on to get ME/CFS, that would be a lot of cases of ME/CFS, much higher than the generally agreed ME/CFS prevalence of 0.2%.
I haven’t read this but in my case, although IBS was diagnosed before ME, the ME came first. I got ill aged 16 and was relatively mildly affected for the first few years after giving up sport. I had maybe one or two loose bowel movements a year when I was very stressed e.g. important exam (something I never had before) but it was other symptoms I was more badly affected by. It was only 5 years later when I was getting a lot worse (but still undiagnosed) that bowel symptoms became quite prominent. I wish the gastrointerologist had diagnosed me with ME then as it might have stopped me becoming severe.
It's interesting that they say...
Before school age, I remember consuming antibiotic "wafers" like they were candy [well, not that much, really]. I think they were flavored to make them more palatable. I was given these wafers for the severe ear infections I got back then. Children tend to get more ear infections because the eustachian tubes that normally drain the ears are more easily blocked at a young age because they are narrower and more horizontal in children. That might be one reason for children consuming a lot of antibiotics prior to school age.
I think it is just as likely, if not more, that children who have a lot of infections are more likely to go on to develop ME.
Having lots of infections may indicate that they are harder hit by viruses.
I think there should be some additional information about this paper, and also replying to some of the questions from the other comments. I'll give it a go.
- When 3/4 authors on a paper share the same surname, some eybrows will be raised, often for good reason. Looking them up, one of them is actually a dentist, not an M.D. Not sure how the dentist contributes here.
You are so right. According to those numbers, approx 7% to 13% of the general population should have M.E. with the ICC criteria. There might be several reasons for this misleading result.
In fact, three of these authors have been running their own IBS clinics for some time. So the only M.E. patients they get, are the M.E. patients who have severe problems with their digestive system - a.k.a. IBS. So the results here are not representative for the general IBS population, and certainly not the general M.E. population.
The authors never, throughout the paper, claim that they have chosen patients randomly either. So the results in this research paper are from selected cases that have gone through their clinics during a period of 26(!) years, and hence, it can not support anything other than a questionable hypothesis.
- One serious oddity about this paper is the claim that they have used ICC, International Consensus Criteria, for the definition of M.E. The first ICC paper was published in 2011, and was not used clinically until many years later. How, then, do they know for sure that patients who visited their clinics 26 years ago could be diagnosed with M.E.? Do they have psychological profiling at their clinics to exclude primary mental illnesses? This seems really questionable.
- In addition, the main author (A. Berstad), is a retired M.D., over 80 years of age. He has definitely done a lot of good for IBS in Norway. However, his theories from the recent years that IBS can cause M.E. has not been proven anywhere, and seems to be an unfounded causality claim. In fact, there are more researchers saying that IBS can come from the effects M.E. has on the immune system, hence also affecting our digestive system.
In this interview (in Norwegian) he claims that up to 85% of M.E. cases are a result of bad gut bacterial flora. Also, that 70% of Fibromyalgia cases start with the same bacterial flaw. There are no research papers to support these claims. He also claims that a bad bacterial flora is also behind people becoming allergic, getting autoimmune diseases in general, and chronic fatigue in general.
- Some of the main claims of the paper talks about Tryptophan being a solution, and that by ingesting more tryptophan your body will heal. However, Ron Davis himself have warned about this pathway, saying that it might even be possible to induce autoimmunity by inserting Tryptophan into your body. So if you try it out, do it at your own risk. If M.E. is an autoimmune disease, you might become sicker than you already are.
So, to add up, the hypothesis might seem intriguing, however, the paper could be criticized in a lot of ways. Even thogh the hypothesis can be criticized, I am still super happy that there is research being done on M.E. and the digestive system
Be sceptical, live long and prosper!
Maybe I misinterpreted the paper. I had the impression the authors were saying 65% of their IBS patients went on to develop ME/CFS (at some point later).
But perhaps the authors meant that 65% of the IBS patients they see also have ME/CFS.
Generally speaking there is a strong association between IBS and ME/CFS. One paper found that 92% of ME/CFS patients had IBS in their lifetime (compared to 18% for healthy controls).
The paper does say that:
So the ICC was available at that time.
Not saying you misinterpreted. I might have misinterpreted. Or we both did.
I also strongly agree with the link between IBS and ME/CFS. It is the causality claim I find difficult to digest (pun intended), where they claim that IBS comes first, and then turns into ME/CFS.
You might be right on the interpretation of the 9 year data collection, though, as it is not 26 years of data, but patients telling about medical experiences retrospective, up to 26 years. My bad
It's possible prior IBS might help set the stage for ME/CFS. ME/CFS is usually triggered after a viral infection. Perhaps if that virus meets an immune system that is dysfunctional because of IBS, maybe the immune response does not properly deal with the virus, and that leads to ME/CFS.
One study found that IBS-D patients have immune exhaustion (T-cell exhaustion).
Very true. There seems to be several reasons for ME/CFS, and viral infections in the gut, or elsewhere in the digestive system, might be one of them.
I first started to get sick after a mystery gut infection. It seemed to trigger IBS symptoms although I never got a formal diagnosis. Two years after that, I caught EBV and went downhill rapidly and I ended up being diagnosed with ME. Gut issues have been a big part of my illness.
I've never had gut symptoms, despite repeated antibiotic use when I was very young (I had viral ear infections - the antibiotics did not help). I did the uBiome test a few years ago and nothing particularly stood out. ¯\_(ツ)_/¯
Then again, my illness was not a typical CFS case, so...
That is an excellent point!
But not all problems that originate in the gut give gut symptoms, that's what's so frustrating about them. If the immune system is triggered by something in your food, but you don't have a typical gut symptom, who looks at your diet? To take an easy example.
My university has closed down today due to coronavirus, and I was going to read up on some prior lectures I haven't gone to due to recovering from PEM. Turns out they are about IBS, MUS, and the biopsychological model. I especially liked how there are multiple slides with "little to no effect" of any treatment, but the suggestion is still to tell patients to be optimistic about outcome
That's a fair point and I am sure, for some, solutions in the gut could be found. Not necessarily for everyone though.
A lot of the seemingly new advice I 've seen recently are things I spent a lot of time, energy and money on 20 years ago. At one point they and I were convinced that if they cured my gut problems they 'd cure ME. Nope.
Curiously I didn't react as expected at all to a number of things we tried, but found other things helpful by coincidence.
Despite a marked improvement in gut function I remain severely affected by ME.
On the other my pal has an unbelievably sensitive gut and allergies. Apart from the acute stage of an allergy when she is clobbered by symptoms including brutal headaches she races around the place. Plays sports a couple of times a week, walks her dogs every day, goes to evening classes. No hint or sign of ME.
Another issue that strikes me about gut issues is that for some people gut issues may make them more susceptible to illness which could trigger ME, but for others ME may be affecting their gut.
The other issue is that we don't know very much about the enteric nervous system. Some ME patients, like patients with primary autoimmune diseases go on to have issues with gut motllity and gastroparesis.
Some of that may be drive by leaky gut, allergies etc, but equally causation could go in the other direction too.
We know surprisingly little about it.
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