Pathogens associated with triggering ME/CFS - discussion thread

Gosh, perhaps I should have asked, what significant infection has not been associated with a long-lasting post-infectious fatigue syndrome?

I think an interesting question would be whether the different aetiologies lead to distinguishable, albeit, similar, conditions. Or does everyone end up with one symptom whilst retaining aspects from the different causative infection.

In the CIBA conference papers someone, I don't recall whether it was Mowbray or White, claimed to be able to distinguish between the EBV and the enterovirus cases. I have always suspected that the post 1987 lumping led to the blurring of distinctions.

I may of course be wrong. Someone had to say it.
 
In Laura Hillenbrand's award winning article of her experience with ME/CFS, when she finally saw a doctor about her symptoms, she tested positive for strep throat (a bacterial infection, not a virus). She tested positive for strep a couple of more times, and, when she was later tested for EBV, she had high titers of that, too. It seemed to take several months to for her strep infection to clear up.

I strongly suspect that a strep infection precipitated my onset of ME as well. Strep is most common in children, but it occurs at all ages.

However, the wide variety of ME infective "triggers" suggests that it's probably not a specific infection that triggers ME/CFS in infection-associated cases, but is, perhaps, the immune response to the infection, instead.

That immune response seemingly changes something in a way not easily reversed. I think that that something might be the microbiome - but speculations are a dime a dozen, as they say.
High ish strep in stool test for daughter. Practitioner advised that it seemed to correlate with both autism and anxiety in their experience ( anxiety pre ME and definite autistic traits) . Seems a potential chicken/ egg scenario?
 
I had a 24 hour vomiting bug, not reported to GP or tested. Another family member who had the same bug at the same time recovered completely. No idea what infection it was. My ME symptoms started immediately after that, and I was diagnosed with PVFS, relabelled after 6 months as ME by GP.
 
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My experiences:

1. summer virus 6/2001, sudden onset, immediate impact, IBS symptoms, housebound for 6 months.
Taken outside only for medical appointments. Diagnosed PVFS by Consultant after 5 months.
Notes from the time confirm that I had PEM, muscle pains and Brainfog symptoms, amongst others.

Gradual improvements and returned to work/life slowly but big lifestyle changes, part-time hours plus no work at all on Wednesdays.
After 4 years, still part-time work, but by then 90-95% ‘healthy’.

2. Sepsis caused ‘relapse’ 8/2013
Repeated UTI’s over prior 10 month period until one occasion, when EColi was resistant to the antibiotic I had been prescribed. That caused Sepsis.

No recovery of energy to pre August levels. (I describe this as a ‘relapse’ as, I think, my body was pre disposed to ME after the previous severe infection.)
Officially diagnosed CFS by NHS GP (in accordance with NICE guidelines) 10/2013
Diagnosed CFS/ME by CFS Clinic 3/2014
Accepted as participant with UK ME/CFS Biobank 9/2018
 
EBV has by far the most published evidence that ME/CFS can follow after an acute infection:

https://www.ncbi.nlm.nih.gov/pubmed/19564299
https://www.ncbi.nlm.nih.gov/pubmed/9926075
https://www.ncbi.nlm.nih.gov/pubmed/20819961
https://www.ncbi.nlm.nih.gov/pubmed/16950834

Enterovirus has by far the most published evidence that it can exist as a chronic active infection in the tissues of ME/CFS patients:

https://me-pedia.org/wiki/List_of_enterovirus_infection_studies


I've never come across any of the following viruses being linked to triggering ME/CFS, or being found as possible active infections in ME/CFS patients:

norovirus, adenovirus, HHV-8, rotavirus, rhinovirus.
 
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rotavirus
Clinical characteristics and complications of rotavirus gastroenteritis in children in east London: A retrospective case-control study

Systemic Rotavirus infection


Maybe you are right about rotavirus, Hip.
It looks like it can cause severe disease, with high fevers and even encephalopathy and death.
It looks like it can be a systemic infection, not just confined to the gut.
It can occur in outbreaks, where a proportion of people developing a post-infectious fatigue syndrome, even if a small proportion, could be expected to be noticed.
It seems that quite a lot of studies have been done on rotavirus in humans and animals.

And yet I haven't found any mention of any post-rotavirus fatigue syndrome.
 
She subsequently had two more similar patches with oral Azithromycin and then Clarithromycin, which enabled her to complete her A level in Geography and pass one more Maths modules as well as participating in some socialising with friends etc.

Interesting. I had a course of high dose clarithromycin at the beginning of this month for a large abscess. As well as sorting out the abscess, it seems to have righted whatever was causing the IBS I've had for six years, and the drenching hot flushes I've had since 2005 every time my bladder is full.

The hot flushes stopped as soon as the antibiotic got into my system, and I was able to sleep right through the night. I'm so hoping it lasts – sweating heavily every 45 minutes during the day, and having to keep changing my sleep top and pillowcases during the night because they're wet through, is just miserable!

Apologies for drifting off-topic. I think my ME was started by being exposed to my boyfriend's glandular fever (I wasn't actually ill with it, just swollen glands in my neck and groin), but it's possible I also had a tick bite the same year.
 
And yet I haven't found any mention of any post-rotavirus fatigue syndrome.

Same for norovirus: it's known for causing infectious outbreaks with gastroenteritis (stomach flu) symptoms. You sometimes hear of norovirus outbreaks (winter vomiting bug) on cruise ships.

But I've never come across anyone on the ME/CFS forums whose ME/CFS developed after being infected in a norovirus outbreak; nor have I seen any studies linking norovirus to ME/CFS. Yet there are 20 million norovirus infections per year in the US — which is much higher than the 2 million yearly coxsackievirus B infections — CVB being the main enterovirus found in ME/CFS. Ref: here

Adenovirus can also cause outbreaks (these sometimes occur in military barracks), yet again I've never come across any link between adenovirus and ME/CFS.
 
I think this 2016 literature review about Q-fever is really helpful:

Fatigue following Acute Q-Fever: A Systematic Literature Review
Morroy et al, 2016,
https://doi.org/10.1371/journal.pone.0155884
I struggle to see how anyone could read this document and conclude that this illness is psychogenic.
Epidemiology:

Fatigue following acute Q-fever was first described in 1960 [68]. Without indicating a time-relation with acute Q-fever, it was noted in 1990 that 4% of acute Q-fever cases had prolonged fatigue [53]. In 1992, it was stated that approximately 23% of study subjects developed QFS within 12 months following acute Q-fever [44]. Ever since, several studies on fatigue following acute Q-fever reported different prevalences. It was stated that 5–10% of patients experience residual asthenia six months after acute Q-fever and only few after one year [38]. In a reaction, it was underlined that a substantial proportion of acute Q-fever patients have symptoms similar to QFS for 6–9 months after the acute infection and then recover, but 8–10% of patients exhibit symptoms for at least a year [33]. This is similar to other reports, showing persistent symptoms for longer than two years [3], up to six years after the infection with 66% of patients reporting fatigue [14]. In Australia, QFS is the most common sequel of acute Q-fever reported to affect 10–15% of patients [70]. Higher percentages were described, with up to 28% of patients meeting the Centres for Disease Control and Prevention criteria for CFS 5 to 14 years after acute Q-fever, compared to none in the control group [8, 15]. The highest percentage of reported fatigue was 69% five years after acute Q-fever [9]. CFS criteria were met by 42% of C. burnetii-infected patients and 26% of controls [9, 15]. Ten years after acute Q-fever, 68% of patients reported fatigue of any duration [54], of whom 20% met the CFS criteria [15]. Excluding co-morbidity, 8% of patients met the CFS criteria compared to none of the controls [54]. C. burnetii-exposed compared to non-exposed subjects reported ten years later a fatigue prevalence of 65% vs. 35%, respectively, and 19% vs. 4% met the CFS criteria [7, 15]. In accordance, later results demonstrated fatigue to be more common after Q-fever compared to controls [58], up to two [61] and six years later [49, 69].

12]. And, although not significantly different, 12 months after acute Q-fever, patients were more fatigued than after Legionnaires’ disease, while being younger and having less pre-existing health problems [11]. In patients with a lower respiratory tract infection who were C. burnetii seropositive 10–19 months after the acute illness, 40% reported clinically relevant fatigue, compared to 64% of seronegatives, concluding that patients have long-term health problems after a lower respiratory tract infection in general [64].

In conclusion, fatigue following acute Q-fever might not be specific but occurs frequently and may persist for years. A large variance in prevalence of fatigue after Q-fever is reported between countries, due to differences in definitions, study designs and populations, and measurement tools, which impairs direct comparisons.

...In conclusion, there are clear indications that fatigue following acute Q-fever results in a high burden of disease, a major negative impact on the health status of patients, and has significant economic implications.

Symptoms
It was interesting to see how closely QFS matches broader CFS symptomology. The most striking difference to me was the addition of night-sweats. My son and I get these, but this symptom is rarely mentioned in ME/CFS symptom lists.

I haven't yet found any papers on fatigue syndromes in animals infected by Q fever though. Although of course things might be different in ruminants, I would have thought there would be cases of Q fever in non-human primates, and therefore some cases of QFS. With QFS incidence rates of 10 to 20% of those with symptomatic C. burnetii infection in humans, surely we would see something in non-human primates?
 
The most striking difference to me was the addition of night-sweats. My son and I get these, but this symptom is rarely mentioned in ME/CFS symptom lists.

I thought this was a standard part of the Ramsey definition. So much was lost with deciding it was all about fatigue.

Doesn't Brucellosis also feature night-sweats. Supposedly with a distinctive aroma. I think "wet dog" was the description.
 
The most striking difference to me was the addition of night-sweats. My son and I get these, but this symptom is rarely mentioned in ME/CFS symptom lists.


Doesn't Brucellosis also feature night-sweats.

Also variations of the Babesia parasite. They can test only for a couple.

Of course, as far as I am aware, there is not an established relationship between the parasite and ME/CFS.
 
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If an infection was linked to one's onset, an interesting question might be how severe it seemed compared to other infections you'd had in the past. Mine was among the worst I'd ever had, but there had been prior infections of similar intensity that obviously didn't result in ME. The sore throat was worst ever, though.

I guess I'm asking if people have developed ME after what they considered to be a relatively mild or run of the mill infection. I believe the Dubbo study suggested that is was perceived intensity of the symptoms which was associated with the development of ME, but they may have used that metric because somehow quantifying the actual severity in so many patients would have been impractical, if it could have been done at all.
 
Both, my first stage ME onset and then my severe onset I had the severest sore throat ever experienced, they had a very severe heat to them. Never experienced that kind of heat other than those two times.

I also experienced the night sweats which were mainly wet through at the chest area, great slick of water saturating nightwear and sheet. This was a frequent symptom in all the years of my severe ME and into severe/moderate ME. I rarely get these now. So mainly a symptom of severe ME for me.
 
So, the fact that there seems to be acute infections involving fevers and sickness behaviour, that can be serious to the point of killing people and result in people lying in bed for a couple of weeks or more but that don't have an associated post-infective 'fatigue' syndrome suggests that the fatigue syndrome isn't (primarily or only) a result of deconditioning or a psychological response to the trauma.

It's not likely that most people will know whether they have a disease with an associated fatigue syndrome before deciding whether to avail of the secondary benefits of ME/CFS. That and the fact that people all over the world who haven't heard of ME or CFS seem to develop it after only specific illnesses suggests that the illness isn't psychogenic.

It suggests that whether a person develops a post-infective 'fatigue' syndrome has something to do with the illness. Of course, not everyone gets the post-infective syndrome after EBV or Q-fever, so there's probably a host-pathogen interaction, but there's something that differentiates the pathogens that cause a post-infective fatigue syndrome from those that don't.

The weird thing is the range of types of pathogens that are associated with a fatigue syndrome - viruses, bacteria, amoeba and even the toxins from dinoflagellates in the case of ciguatera. In the case of amoeba, as I previously noted, I wonder if it's not really the amoeba (e.g. giardia) that causes the fatigue syndrome but another pathogen that infects people at the same time, either from the same contaminated water or even actually inside the amoeba. I saw that the bacteria that causes Q-fever (Coxiella burnetii) can live inside amoeba, as can legionella bacteria.

If we could make a really good list of the pathogens firmly associated with a post-infective fatigue syndrome and those that are clearly not, it might be possible to narrow down the ways that the illness might be causing the CFS.


Re the severity - I'm not sure. In the case of my family, my daughter was hospitalised with severe stomach pains, but for my son and I, from memory it just seemed like a standard gastro-flu. And my daughter was the one less severely affected with ME/CFS. I've had worse illnesses before.

What did Jason's prospective EBV Chicago studies find? I think they may have found an association with severity? Did they use any objective rating of severity?
 
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I also experienced the night sweats which were mainly wet through at the chest area, great slick of water saturating nightwear and sheet. This was a frequent symptom in all the years of my severe ME and into severe/moderate ME. I rarely get these now. So mainly a symptom of severe ME for me.

Yeah - oddly, I only started to have night sweats after the initial fever and sore throat had passed. I don't think I'd ever experienced that before. People can break out into a sweat when a fever breaks, but I assume it's pretty much a one time thing reflecting the system's realization that the infection is over and the body needs to cool down - not something that repeats again and again. For me they pretty much went away after just a couple of months, but I remember the times back then when I would wake up with my shirt and hair being just drenched.
 
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