ME/CFS symptoms purely iatrogenic?

[jonatan]

Hi all,

as this is my first post, a (very short) intro: I'm the spouse and primary caregiver of a patient suffering for over a decade from various symptoms and given the "ME" diagnosis. I'm casually following the research and as such may ask a redundant question (although some Googleing didn't show me any answer).

I think it's safe to say that it's an established fact that antibiotics mess up the gut microbiome. What surprised me recently is that supposedly many more types of medicine (anti-psychotics, anti-depressants, other?) seem to have a significant impact on the gut microbiome. In addition, last year produced multiple research findings claiming that there are deviations of the gut microbiome in ME/CFS patients compared to healthy controls. Given these findings, can it be that the main symptoms patients are suffering from are not caused by an initial viral trigger, but instead by side effects of its treatment (in the form of antibiotics/antivirals)? This may explain why:

• it has been impossible for scientists to find a viral cause,
• prevalence is higher in the "developed" world (due to better access to pharmacological treatment of infections?),
• prevalence is higher in the last decades (for the same reasons, i.e. more pharmacological interventions);

Has this hypothesis been researched? Any pointers are highly welcome.

Thanks!

 

[digital dog]

I think this is very possible, but possibly only part of the puzzle of immunity.
I was on antibiotics for two years before I got ill.

 

[lansbergen]

I think it's safe to say that it's an established fact that antibiotics mess up the gut microbiome

So do virusinfections and other stressors. Usely it goes back the to pre event situation. If it does not the question should be why not?

 

[A.B.]

• it has been impossible for scientists to find a viral cause,
• prevalence is higher in the "developed" world (due to better access to pharmacological treatment of infections?),
• prevalence is higher in the last decades (for the same reasons, i.e. more pharmacological interventions);

Absence of evidence is not evidence of absence. Also viruses are not the only cause of disease. That it often (but not always) starts with a flu like illness doesn't necessarily mean that a virus is the cause. A variety of pathogens have been found to be associated with CFS, and most infected people don't develop CFS. There must be some other factor involved. Maybe a pathogen plus an immune deficiency. Maybe the pathogen just sets off an autoimmune process that would have triggered sooner or later anyway.

We don't have good information on prevalence but it seems to be higher in less developed countries. If various medications where the cause, the prevalence should be clearly lower in less developed countries.

The IOM report concluded that the vast majority of sufferers are undiagnosed. Awareness seems to be increasing, which could easily explain why number of diagnosed cases seems to be increasing (I don't know if that's the case, just going along with your idea here). Even if prevalence were increasing that doesn't tell us why it's happening, and there could be many reasons.

It's still possible that this is a cause in a subgroup, but there are good reasons to think that the main causes are other things.

 

[jonatan]

As a layman, I'm not in a position (and did not intend) to discuss the "iatrogenic ME" hypothesis myself in this thread, I was only curious if this was researched in some way. Sorry for the confusion...

 

[Jonathan Edwards]

I think it's safe to say that it's an established fact that antibiotics mess up the gut microbiome. What surprised me recently is that supposedly many more types of medicine (anti-psychotics, anti-depressants, other?) seem to have a significant impact on the gut microbiome. In addition, last year produced multiple research findings claiming that there are deviations of the gut microbiome in ME/CFS patients compared to healthy controls. Given these findings, can it be that the main symptoms patients are suffering from are not caused by an initial viral trigger, but instead by side effects of its treatment (in the form of antibiotics/antivirals)? This may explain why:

• it has been impossible for scientists to find a viral cause,
• prevalence is higher in the "developed" world (due to better access to pharmacological treatment of infections?),
• prevalence is higher in the last decades (for the same reasons, i.e. more pharmacological interventions);

Has this hypothesis been researched? Any pointers are highly welcome.

Thanks!

The great majority of people diagnosed with ME never have antivirals so that seems not to be the cause of symptoms. Most people take antibiotics at some time in their lives and do not get ME symptoms. It seems conceivable that some shift in intestinal micro-organism population is a problem in ME. However, it is worth noting that microbiome research is the current fashion in every disease and so far pretty little evidence has been found for it being of primary importance. I have not seen anything in ME that looks particularly striking.

The most likely reason why scientists have not found a specific viral cause is that there is none. We know that an ME-like syndrome can follow a variety of infections - I had it myself. A specific viral cause would not be missed because of antivirals because most patients never have them.

I am not aware of evidence for ME being more prevalent in the developed world. And antibiotics are widely used and often over the counter in developing countries so I doubt this is relevant. I am also not aware that we have any good evidence for the prevalence of ME increasing recently. The diagnosis is made more often because the name is relatively new.

So I am sceptical about the relevance of gut bacteria and a role for antibiotics. It would also be very difficult to confirm because you would have to do a prospective study of randomising large populations to using antibiotics or not, which would almost certainly be unethical.

 

[duncan]

Other possible reasons they have not found a viral cause is they don't know how to find it, or identify it, or it's bacterial or retroviral...

An immune dysfunction precipitated by a pathogen of some sort seems to be the prevailing theory these days.

 

[Hip]

it has been impossible for scientists to find a viral cause,

Impossible?

Three separate studies that performed brain autopsies on deceased ME/CFS patients found enteroviral infections in their brains, whereas no enterovirus was found in the brains of controls.

There have been calls for setting up an ME/CFS post mortem tissue bank, which would be able to perform more brain autopsies. However, the high cost of setting up such a facility has been the stumbling block.

 

[Hip]

prevalence is higher in the "developed" world (due to better access to pharmacological treatment of infections?),

Is it the case that ME/CFS is more prevalent in the developed world? It can be hard to get good data from developing countries.

And is it the case that the developed world has more access and exposure to pharmacological treatments like antibiotics?

In developing countries like India, very potent antibiotics can and are routinely bought over the counter without prescription. Indeed, it is the willy-nilly over-use of OTC antibiotics in developing countries that is thought to be largely responsible for creating strains of bacteria which are antibiotic resistant. Whereas in developed counties, antibiotics are used much more judiciously, because of the concern with creating antibiotic resistance.



Another factor that is different between the developing and developed world is exposure to pathogens. Modern cleanliness and sanitation in the developed world acts to reduce our pathogen exposure.

There is a theory, called the hygiene hypothesis, which posits that the assumed increase in allergies and autoimmune diseases in the developed world may be due to reduced early childhood exposure to infectious microbes, as a result of the modern cleanliness and sanitation. Given that ME/CFS may be autoimmune, this could be relevant.

 

[Richard7]

I know that there were researches at Newcastle uni (NSW) in the late 90 and early 2000s who looked into the gut and chronic illnesses.


Well they were looking at microbiome and urine, trying to get a handle on inputs and outputs as it were.


I never read the research, but had dinner several times with one of the researchers and my understanding of their position was that you can think of most people as living in the bottom of a valley, getting ill is a bit like walking up the side of the valley and eventually left to themselves people will return back to bottom of the valley. The valley is a kind of equilibrium condition. Chronic illnesses are odd in that they seem to knock people right out of the valley. They may become stable and find a new equilibrium, a new valley, but it is nothing like the normal one.


Their idea, as it was explained to me, was that some major event, the example given was an appalling car accident, leads to a change in the body's chemistry, as the patient is using up neurotransmitters faster than they can be recycled or replaced and so on, and that this altered body chemistry leads to the die off of the normal microbiome and the establishment of a new ecosystem and a new equilibrium.


They had taken urine samples from a lot of healthy people and measured amino acids, metabolites and I'm not sure what else, and found that healthy people fell into a handful (I think 6) distinct clusters.


Their idea was to give people a mixture of amino acids to push them towards the closest cluster, while doing what they could with antibiotics, changes in diet and probiotics to shift people's guts to a normal pattern.


This worked well for the two of my siblings who have/had CFS. Or seemed to. They are both working and living normal lives, but one of them was diagnosed with hashimotos and has now been diagnosed with MS.


I was not entirely able to follow their advice. They advised me to take some things (betaine hcl and bile salts) which were not available in Australia at the time. This was not their fault. Their had been a change in the law and the manufacturers had decided that the costs of complying were too high, kind of its a bit complex and I only know what the companies I spoke to told me.


I did take the amino mix when I could afford to and have major improvements, until the patent right holders had a dispute with the manufacturer and the aminos became unavailable.


At the time I did not know of compounding pharmacies, and went into a pretty steep decline when the aminos ran out.


In November 2011 I started taking an amino mix based on urine tests done by the same laboratory, but it does not seem to be as effective. Part of the problem could be that I am no longer taking the right mixture for me. As you change your gut microbiome you are meant to get retested and keep monitoring and making changes as you go.


I don't have a local doctor who could work with me on this, When I was doing it, and to the extent I did it, I was working with a doctor over the phone, which meant that I had to pay the full cost of each consultation (no medicare rebate) and the pathology was expensive too.


Indeed in 2012 I found that I could pay for the aminos or the testing and consulting but not both.


So I have been doing it alone.


I am now taking betaine HCL and ox bile, and have managed to get rid of my SIBO, and my gut seems much better but I cannot afford testing at the moment.


(Why do these answers always become autobiographical? apologies too all who would rather not know.)


Anyway, if one looks at all of the things that influence our gut bacteria, food, medicines, exercise, the bile from our gall bladders and so on, it is pretty clear that any profound change to our habits will lead to a profound change in our gut bacteria. And it would seem that the reverse is also true.


Remember too that viruses prey not only on us but also on the bacteria in our guts.