Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS?

[Sidereal]

Sidereal, ME/CFS is not considered a neurological or infectious or autoimmune or metabolic disease by many many people.

Ignoring wording ignores this stark reality.

I agree that words matter and the way we phrase things is very important but are you saying we should deny that psychiatric symptoms occur in ME/CFS?

 

[duncan]

I am saying that how you express our illness, and its association with co-morbid or resultant disorders, matters. Presentation matters. And they matter because this is a contested and controversial area. Each misstep in characterization that leaves room for ambiguity can result in problems.

 

[Marco]

A dangerous game to suggest that indeed. Kidding aside, it's not far fetched. There is likely a large transfer of microbes (bacteria and viruses) when you first become intimate with someone. It's not unheard of for someone to develop ME shortly after being with someone new, or even after a single sexual encounter.

Cough!! 'Intimate' - how dare you. That's Mrs Marco you're talking about!!

Also not too far fetched that also just before onset I had just come back from my first foreign holiday (Greece) following pre -holiday vacs, encounters with tick ridden dogs and raw sewerage in the sea (must have pre-dated Blue Flag beaches). Anyone catch the BBC report today on the 'Beach Bums' study of surfers?

The list is endless. I'd also been under a prolonged period of psychological stress.

 

[bertiedog]

In the case of enterovirus, we know that non-cytolytic enterovirus infections are only hosted in cells which are non-dividing and quiescent, such as brain cells (neurons and astrocytes). So tissue compartments containing quiescent cells that enterovirus is able to infect should be amendable to supporting a chronic infection.

Perhaps if there is immune weaknesses during the acute enterovirus infection phase, this gives the virus enough leeway to break into deeper tissue compartments containing quiescent which it can infect, and from there on, the infection becomes chronic, developing into ME/CFS.

Dr Chia's, observation that immune-weakening corticosteroids given during an acute enterovirus infection are a recipe for creating ME/CFS would seem to support this idea.

And this corticosteroid connection might, incidentally, help explain why stressful events have been linked to the onset of ME/CFS: stress increases cortisol levels.

In my case I am pretty sure I had low cortisol for many years (over 20 years) before I developed ME/CFS type symptoms. Would this fit the model too?

Pam

 

[halcyon]

Patients usually consider their onset to be when obvious disease and disability started but upon further questioning you often uncover a long history of irritable bowel syndrome, allergies, migraine, menstrual problems, anxiety, depression etc.

This is an important point (@leokitten made a similar one above). Despite being in the best shape of my adult life at ME onset, I was dogged by fatigue, headaches, and GI issues for a few years before onset. What's interesting to me is that the onset of those problems was sudden much like my ME, after a gastrointestinal illness. I may have already had a chronic enterovirus infection in my gut (or some other significant microbiome disturbance) when I caught a second one that went systemic and triggered ME. I really hope Lipkin turns up something interesting looking in this area.

 

[halcyon]

Also not too far fetched that also just before onset I had just come back from my first foreign holiday (Greece) following pre -holiday vacs, encounters with tick ridden dogs and raw sewerage in the sea (must have pre-dated Blue Flag beaches).

A recipe for ME if there ever was one.

 

[Marco]

A recipe for ME if there ever was one.

I forgot to mention a punishing fitness regime (1.5km swim 6 days out of 7).

 

[halcyon]

my first foreign holiday (Greece)

Were you there in 2001 or 2005-2007 by the way? There were noted enterovirus outbreaks there those years, with several echovirus types being recovered from sewage samples.

 

[Marco]

Were you there in 2001 or 2005-2007 by the way? There were noted enterovirus outbreaks there those years, with several echovirus types being recovered from sewage samples.

I wish. My last holiday was in 2000. I was referring to 1985.

 

[Eeyore]

My ME came on after an acute illness, but it wasn't gastro. It was mostly upper/lower respiratory and general flu-like stuff with high fever.

My mother's came on after a bacterial mastoid infection when she was 15, despite aggressive antibiotic treatment.

I do not believe any particular pathogen is responsible for ME - it's just that we don't respond normally to infection, stress, and inflammation.

 

[halcyon]

it's just that we don't respond normally to infection, stress, and inflammation.

I'm curious to hear your theory on what precipitates this abnormal response, as for most of us it doesn't seem to be there from birth, at least not obviously.

 

[Jonathan Edwards]

Sorry if I didn't understand this statement correctly, but you are deducing then that 75.6% people have ME/CFS due to infection as the root cause? I don't know if @Jonathan Edwards has ever said it openly here on PR but from his posts I believe he is skeptical of this, and so am I.

It is possible that the infection just might be something that happens as a side effect of the underlying autoimmunity that looks to be causal because it happens at the time as the ME/CFS onset, but in actuality the infection might not have anything to do with bring on the disease.

Yes, to clarify, I doubt infection causes autoimmunity more than very rarely, but I think ME presenting as an infection may be autoimmune. If the effect of the autoimmune response is to make the person react excessively to viruses then the first sign of the auotimmunity will be a 'viral illness'. Something like this happens in lupus. The effect is to make the patient unable to defend themselves against bacterial or fungal infection so the lupus may present as severe sepsis.

 

[SOC]

This is a difficult question. One ME specialist told me that if I had had vaccines previously, and not had a bad reaction, then I should get the vaccine. If I had had a bad reaction or had no experience, I should avoid it. Other ME specialists have suggested that one should get it as the flu is much worse and could cause more serious issues.

It is my personal opinion, but not medical advice (which you should seek from your physician, not a forum) that the live attenuated vaccines are much safer than the heat killed versions. These are usually nasal sprays or something similar.

I general I agree and got similar advice from my ME/CFS specialists EXCEPT that they all said the PWME should avoid live attenuated vaccines and should stick to killed virus vaccines.

The most recent recommendation I got was to have the preservative-free, killed virus flu vaccine. You usually have to ask for the preservative-free as they don't automatically offer it. I didn't think the preservative-free would make much difference to me as I'm not particularly sensitive, but I did do better with it -- not even the very minor rxns I've had to previous killed virus flu vaccines.

 

[Hip]

It's not unheard of for someone to develop ME shortly after being with someone new, or even after a single sexual encounter.

I have heard this story many times over the years on my website, which details the virus I caught, and the array of mental and physical symptoms it precipitated.

People often report on my site that they caught their similar/same virus after a sexual or amorous encounter, frequently just through a one evening affair. They report they catch a respiratory or gastrointestinal virus, which causes a bad sore that or GI symptoms like diarrhea, and then often terrible mental symptoms ensue within weeks or months, like severe anxiety or horrendous anhedonia, as well as various physical symptoms.

This was also the route I caught my virus, just though kissing someone I met one evening. Woke up the following morning with a really bad sore throat, and the rest is history. Severe anxiety and anhedonia soon ensued, as well as increased fatigue, but it took a few years (and nasty episode of what appeared to be aseptic meningitis, likely from the same virus) before that fatigue developed into full ME/CFS.

That's when you start to think in terms of "if only". If only I had not gone into town on that evening...

I unfortunately, directly or indirectly, passed this virus on to 30+ friends and family via normal household social contact, a few of which then rapidly developed nasty cases of anxiety disorder or anhedonia. And nearly all the people who caught my virus showed some sort of permanent mental state changes, albeit subclinical mental symptoms, like becoming more irritable, grumpy, negative in outlook, losing motivation, mild anhedonia, complaining more of fatigue, and becoming emotionally flatter. Nothing that you could easily quantify, but certainly noticeable if you know the people well. And certainly symptoms which subclinically reduce the quality of life. My virus produced some unusual physical symptoms, so it was relatively easy to know who had caught it. The most severe physical symptoms were sudden heart attacks in 3 people.

All that misery, in myself and others, transmitted just from one kiss!


Of course when it comes to the ME/CFS that can appear after mononucleosis, remember that mononucleosis is not colloquially known as the "kissing disease" for nothing.

 

[Hip]

In my case I am pretty sure I had low cortisol for many years (over 20 years) before I developed ME/CFS type symptoms. Would this fit the model too?

It would not fit the model of high cortisol reducing the immune response. I don't know if low cortisol has any significance of its own with regards to how the immune systems tackles infection.

 

[Hip]

@duncan, I find your questions have a troll-like mischievousness about them.

 

[duncan]

I can see why you might think that.

Your "troll-like mischievousness" interpretation is a possible spin on what I would call asking someone to write sensibly and responsibly. I've had students who might interpret in a similar fashion.

 

[Hip]

on what I would call asking someone to write sensibly and responsibly.

First of all, in your earlier post, which I see you have now deleted, you mentioned nothing about "writing sensibly and responsibly". Secondly, where are you suggesting that I have not written sensibly and responsibly?

 

[Eeyore]

I general I agree and got similar advice from my ME/CFS specialists EXCEPT that they all said the PWME should avoid live attenuated vaccines and should stick to killed virus vaccines.

I don't think they're right - a live attenuated virus is going to be weaker and less significant than a common cold. The heat killed viruses are designed to induce a massive immune response and would be much more significant I believe - but everyone may be different. I have only reacted badly to killed vaccines, never live attenuated.

I think the advice comes from what we tell immunosuppressed patients, and I think we are the opposite. I think ME patients overreact to stimuli rather than underreact.

In Dr. Hyde's experience, the worst vaccines were the heat killed - especially hep b. He has a lot of cases that started with hep b vaccines. (Actually hep b is not killed - it was never alive - it's recombinant virus like particles, but it works more like an inactivated vaccine than a live attenuated.)

 

[voner]

Cough!! 'Intimate' - how dare you. That's Mrs Marco you're talking about!!

Also not too far fetched that also just before onset I had just come back from my first foreign holiday (Greece) following pre -holiday vacs, encounters with tick ridden dogs and raw sewerage in the sea (must have pre-dated Blue Flag beaches). Anyone catch the BBC report today on the 'Beach Bums' study of surfers?

The list is endless. I'd also been under a prolonged period of psychological stress.

how about a diet consisting chiefly of Doritos ( inside joke) ? that is the most probable cause of your symptoms...... Doritoitis!