Pathogens associated with triggering ME/CFS - discussion thread

Many report "flu-like symptoms", but it's difficult to know if it was the flu. My symptoms were not flu-like. The virus attacked my thyroid. I don't know if I was tested for viruses so I can't say which one, but I was also heavily vaccinated during that time period.

 

Coxsackie B?

 

I have a colleague from my HIV advocacy days who since contracted West Nile Virus and now she has ME.

 

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As somebody whose condition started with a suspected Giardia infection on a business trip to India, I've read the Bergen studies. Worth flagging that the main ones (that I know of) look at 'chronic fatigue' rather than ME/CFS:

Irritable bowel syndrome and chronic fatigue 6 years after giardia infection: a controlled prospective cohort study.

 

Best I know my ME was caused by measles.

 

I'm in the flu-like category. Trouble is unless there are complications not many people with flu-like symptoms will go to the doctor to get tested (I didn't), you just assume you have the flu and it'll pass soon enough, no point in infecting a whole waiting room of other people. So there's no way of knowing what's really causing those flu-like symptoms.

 

For me it was a major infection complication which changed the microbiome (microbiome homeostasis was different triggering signal, alerting something not right ?). I personally think this made me vulnerable to future 'hits' which eventually brought me down with ME and POTS.

For me, looking back, it was a series of things. I experienced at the age of 20 a very rare and permanent microbiome composition change ( this particular pessary antibiotic is now not used in this way - thankfully other women won't be as unlucky as I was). Ten years later I came down with a very strange vertigo like symptoms which was severe for 2 days before I went down with a very bad cold with severe sore throat. This was the beginning of my ME. Brain function changes began, POTS, and I was getting PEM (though didn't understand it in these earlier years). Six years after ME onset I spiralled down very hard into severe ME via a nasty flu.

I personally think for me it was the complicated infection I had a 20 years old where my body/microbiome reacted badly to the pessary antibiotic. I had an instant reaction and the microbiome composition was changed immediately and never returned to normal. No one has ever been able to explain what happened to me.

I know this is just my story and everyone has there own experience into ME. I just like to add my experience in case there is anyone out there with a similar experience and trying to work things out themselves. I like to hear everyone's experience and so hope everyone won't mind listening to mine.

I'm just popping in for a bit and back to rest again.

 

There is a publication from 2006, which lists the infections that are known to cause post-infectious fatigue. Influenza is on the list. There are many persons who became sick after flu-like symptoms, but where the pathogen was never identified. I therefore presume that the list is not complete.

Kondo K. Post-Infectious Fatigue. Japan Med Assoc J. 2006;49(1):27–33.

 

Measles (at 1,1/2) and EBV (at 17)
I seemed to react to
EBV reduces foxo1a expression

 

Whatever the unidentified virus is, or viruses are, capable of causing atypical glandular fever. Atypical in the sense that it is not caused by EBV. Has Cytomegalovirus been associated with PVFS. Description of the form of glandular fever which it can cause does not seem to fit.

 

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.

 

Chicken Pox as an adult has been implicated as the beginning for several patients.

 

Yes, Charles Shepherd has said that was his trigger

 

I heard something about giardia lamblia?

Herpesviruses?

 

Chlamydia pneumoniae
https://me-pedia.org/wiki/Chlamydophila_pneumoniae

eta:
https://www.prohealth.com/library/c...pinion-by-patient-advocate-james-kepner-24179

first couple of links I found.

eta2: I had pneumonia but don't know if it was this particular strain but there was a lot of talk about it being a 'candidate' for perpetuating ME early 2000s.

 

My daughter developed ME after viral labyrinthitis. The specific symptoms of dizziness/nausea etc went after 4-6 weeks, but she never recovered from the post-viral fatigue!

Interestingly, @Forbin, about a year later she was tested for ASO (Anti Streptolysin O - a measure of ongoing strep infection). She then had intra muscular injections of benzathyl penicillin for 6 weeks (twice weekly). Towards the end of this time she suddenly regained her ability to study, so started going to a Maths tutor. She and I also studied the the AS level Geography Course. Her stamina improved gradually and she was able to study enough from March to May to pass both that summer with the top grade.

She had started the sixth form the previous Sep and gone down with a moderate cold, which then led into the labyrinthitis, within two or three weeks. She was still able to go in for some lessons in that October. We were able to photocopy a friend's Geography notes and she kept up with some of the Maths till about Christmas.

We thought that spring that she was getting better, but her health faded again from the June.

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.

Over this time she was tested for autoantibodies to the basal ganglia. This was an inspirational move by Dr Bansal (seen privately) and followed on from her ASO/strep results. Each time she improved on the antibiotics, her ASO titres had reduced. I know correlation does not imply/infer causation, BUT...

So, she tested positive for autoantibodies to the pyruvate kinase receptors in the basal ganglia!he
However despite numerous attempts we have not been able to get any further with this.
I am interested in Prof Neil Harrisons work on the brain as he has found abnormalities in the basal ganglia in his brain scanning studies. At the time I was able to speak to him about this (AfME AGM Nov 2018) this was only showing on one side of the brain. So, it will be interesting to see if he has more to say about it at the CMRC conference.

 

I can't get it to copy but in the above table under no persistent infection it lists polio virus and Coxsackie B virus which is very strange.

The enteroviruses are very closely related (medical labs only test for enteroviral species using a generic PCR) They cause cardiomyopathy and a lot of work has been done on that. They found that instead of multiplying and bursting open the cell they just keep stuffing the cell with virus. This is bad because it is the bursting of the cell that triggers the immune system.

When they replicate, they do not do it well so they change enough so the immune system does not recognise them.

New research has also found they they can travel in exosomes to connect with nerve tissue so again evade the immune system.

They appear to have other sneaky tricks. Bits of virus can enter the bloodstream and then form a new viable virus when the bits join up in a cell.

Viruses are very thrifty; they do not keep any attribute unless it serves a purpose so none of these adaptions would be necessary unless the virus persisted in the body.

Enteroviruses are very common. They cause summer flu so unknown flu like illnesses outside winter is most likely down to enterovirus.

I do not know why enteroviruses are so neglected. There is a perception that they are common and harmless and I think this is fueled by the success story of polio. Polio 1, 2, and 3 are almost gone in the wild but the other enteroviruses also caused serious illness. I think it is like TB. It became considered a disease of the past, though it was never as gone as people thought. When immigration and widespread travel made it common again, and drug resistance made it a health emergency the old expertise was not there anymore and growing the organism was stuck in the past - it took 6 weeks to grow enough to confirm.

It annoys and upsets me that enteroviruses are not at the forefront of ME research. When the US started with CFS they neglected them completely in favour of research into EBV, mainly because of Strauss's interests. Forty years of neglect have reached the point where even people on the biomedical side of the ME world omit enteroviruses from the list of causes.

Other things may cause ME but to neglect one of the main players from research could be one of the reasons we never get anywhere.