Pathogens associated with triggering ME/CFS - discussion thread

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.

 

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?

 

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

 

@Forbin I had a mild sore throat and ear for 6 months after the viral vertigo onset, but no strep throat at the time. It was the following 6-7 month period I developed strep throat and "extremely" elevated anti-thyroid antibodies. I was sent for a thyroid scan.

 

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.

 

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.

 

Some people have stated they came down with ME after getting swine flu.

And as has been mentioned before, Post Ebola virus Syndrome has some similarities with ME/CFS.

 

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.

 

From personal experience, and from the experience of others on the forums, night sweats seems to be fairly common in ME.

 

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.

 

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.

 

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.

 

@Forbin I used to get tonsilitis yearly. The one that resulted in this was the worst I ever had, its possible it wasn't even tonsillitis but some over ENT infection thing (strep?). Interestingly enough I have never had tonsilitis again since becoming ill with this.

 

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.