Study of Insect-borne Infections in ME patients planned

[SOC]

Remember when newspapers had articles on 'sick building syndrome'? That seems to have fizzled out.

True, largely because they figured out what it really was and established regulations to reduce it. It had nothing directly to do with pathogens. The problem was that new emphasis on reducing energy consumption led some building designers/owners to make their building so tight that there wasn't sufficient fresh air in the buildings. Toxins, CO2, and possibly some pathogens were building up inside the buildings creating an unhealthy environment. New regulations were put in place to require a certain amount of outdoor air to be brought into the building continuously. Sick building syndrome dropped dramatically.

Sometimes when we try to fix something (energy wastage), we just create another problem (toxin buildup). Life is complicated.

 

[SOC]

The clusters are extremely rare after all ... the sporadic cases are the norm.

Indeed, which is why studying the clusters is not the way to get at the root cause of ME. They have to be explained by any hypothesis, but so do the sporadic cases. I'm still thinking that any number of pathogens could trigger ME. Borrelia is probably not the single root cause of ME anymore than, say, EBV. Neither seems to fit all cases of ME even given imperfect testing. Of course there's always the off-chance that some as-yet-unknown pathogen is at the root, but if so, it has a lot of explaining to do. It would have to explain clusters, sporadic cases, and family groupings.

 

[Bob]

I'm still thinking that any number of pathogens could trigger ME.

Me too. It seems to be increasingly clear that ME is caused by many types of hit-and-run stress-events causing disruption to the immune system. This could include any number of pathogens. (e.g. herpes, EBV, tick virus, flu, Q fever, flu, chicken pox, gut bacteria, etc etc.) The pathogen may linger or be removed but the ME remains even if the pathogen is removed. Like you say, there could be a single undiscovered virus interacting with the other pathogens and causing havoc, but there's no evidence for that. I think a lot of confusion comes about because pathogens often linger, and so patients sometimes test positive for something or another. I think it's unhelpful to assume that the pathogen is the illness itself rather than the trigger event.

 

[MeSci]

You're making me feel nostalgic. *Long Nostalgic Sigh*

Me too - some it. It was not long before I became ill. In fact some of the walking across fields and crawling through hedges was in the year before I became ill, but I'm not nostalgic for that, as it was a traumatic time.

 

[duncan]

One time about 20 years ago - long before I knew anything about Lyme - I went camping with one of my kids. We left on a Thursday evening and returned Saturday morning.

I went to shower since I had not in two nights. I noticed all these freckles on my legs.

They weren't freckles. They were deer ticks. All embedded. I couldn't get them off, and I'd heard a little about Lyme, so I went to the local clinic. They helped removed them. They stopped counting at 50.

I asked if I needed any abx. They said no. They told me I only need abx if I became symptomatic, but because it was less than 48 hours that I had been exposed, I was at no risk. So they sent me home.

I started having subtle neurological signs within a year. Within three years I was having trouble driving. That's about the time I noticed my first EM.

 

[halcyon]

Identifying a potential triggering agent for particular cases of ME/CFS does not negate the diagnosis of ME/CFS. It just wouldn't make any sense.

I'm probably not explaining my point very well and even I don't know exactly what I mean. I'm speaking more about CFS and less about ME. I think it's pretty clear that ME is a disease process with a very specific single biological cause. CFS is a general syndrome that the creators even acknowledged will have multiple causes. We can almost guarantee that there are a large percentage of people out there with a CFS diagnosis that have one or more of these vector borne pathogens and that's probably the cause of their symptoms. I think it would be a big step forward to prove this and it could potentially help a lot of people.

Many assume that the trigger for ME doesn't matter but I don't think we know enough to say that yet. It may matter very much for treatment course and prognosis. Theoretically let's say your ME is being caused by persistent Bb in your CNS and mine is being caused by an enterovirus in my CNS. You'd need abx and I'd need antivirals and neither of us probably want to take rituximab. I'm not saying that it negates the diagnosis but I think it's a mistake to ignore the heterogeneity that appears to be present in this disease.

I'm also not saying that someone with Lyme can't also get ME or CFS. Perhaps Lyme might even make you more vulnerable to whatever it is that actually triggers ME. We have so much to learn still.

 

[SOC]

I think a lot of confusion comes about because pathogens often linger, and so patients sometimes test positive for something or another. I think it's unhelpful to assume that the pathogen is the illness itself rather than the trigger event.

To add to the confusion, our immune dysfunction results in more infections (or inability to clear common ones) and reactivations of latent infections. So even if a single pathogen is not the illness itself, the pathogens we do collect as a result of the illness could be causing the majority of the symptoms. Since we're all exposed to different things, we don't all have the same pathogens, but that doesn't mean they can't be wreaking havoc.

In my mind, the question is not, "What is The Pathogen?", but "Why can't we reliably clear common infections?". While it's possible that a single pathogen is at the root of that (as in HIV/AIDS), it seems more likely that it is something else -- genetic, immune disruption from the triggering event, who knows?