Study of Insect-borne Infections in ME patients planned

[MeSci]

Well, I've run the numbers and I think we can now draw a line under this.

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If you don't like the look of it, I can run a meta-analysis on it next week and just keep doing that until we get one we like. That is how you do science, isn't it?

Too much overlap between 'improved by CBT/GET' and ME and Lyme.

 

[MeSci]

But if someone has a vector-borne disease, do they actually have ME? Surely not? If the vector-borne disease is treated then the ME-like symptoms may be resolved. (I'm not saying it's not a useful study.)

So then it may be a curable type of ME. The diagnostic criteria don't include being incurable, do they?

 

[MeSci]

have you never heard of one single M.E patient who had seizures? I have seen, met and heard of lots of PWME that have seizures.

So have I, if you count interactions on forums, although he had been diagnosed with epilepsy as well as ME.

 

[duncan]

Good point, @MeSci , about not being afraid of the undiscovered.

Only, it's not just the pathogens that have yet to be discovered that worry me. It's the ones we know are there, but just aren't looking for them with anything resembling genuine effort.

Take Lyme. Truly a misnomer. It should be called Borrelia, as it is from the genus. There are many species, over 35. The genus Borreilia has many many branches.

The problem is, we have decided testing should pinpoint a species. Unfortunately, because of differences between species, each time we do that, we exclude most other species.

This is an issue. I might have Lyme, get tested for it, but the species of Borrelia that is being tested for is not causing my Lyme. Won't matter. If that test comes back negative, end of story - even though I have Borrelia, I am told I do not.

Why not run a genus-level Borrelia test? Then, if someone nails a positive, parse down in a search for the specific species, then strain?

Other than cost, why isn't this being pursued?

It's questions like these I find scary.

 

[ukxmrv]

The Uni of Sydney (Australia) was running a research project "Chronic Fatigue Syndrome, is there a link with tick borne disease" but I don't know if the results were ever published

 

[MeSci]

Have you never heard of Cheney's work with heart disease in M.E?

This pdf describes a cardiomyopathy associated with CFS.

 

[MeSci]

Good point, @MeSci , about not being afraid of the undiscovered.

Only, it's not just the pathogens that have yet to be discovered that worry me. It's the ones we know are there, but just aren't looking for them with anything resembling genuine effort.

Take Lyme. Truly a misnomer. It should be called Borrelia, as it is from the genus. There are many species, over 35. The genus Borreilia has many many branches.

The problem is, we have decided testing should pinpoint a species. Unfortunately, because of differences between species, each time we do that, we exclude most other species.

This is an issue. I might have Lyme, get tested for it, but the species of Borrelia that is being tested for is not causing my Lyme. Won't matter. If that test comes back negative, end of story - even though I have Borrelia, I am told I do not.

Why not run a genus-level Borrelia test? Then, if someone nails a positive, parse down in a search for the specific species, then strain?

Other than cost, why isn't this being pursued?

It's questions like these I find scary.

Other than cost...

 

[duncan]

@ukxmrv , that Australian effort is curious considering the official stance there on Lyme disease (although there are other TBDs, to be sure).

 

[SOC]

I suppose that clusters could be caused for example by infections spread by mosquitoes?

I'm not sure the idea of ME clusters caused by outdoor insects (or arthropods) flies very well. The clusters we know about tend to be focused on social groups collected in indoor areas -- hospitals, schools, concert halls. It's more workgroup-related than geographical. IIRC, the groupings of the cluster were less family groups (as would be expected with outdoor activity exposure) and more work/school groups.

If the pathogen was transmitted by mosquitos or ticks, I'd expect to see the outbreak spread across a wider population -- several towns, for example, and less focused on a few indoor locations. You'd see a couple of people in each of many work/school groups rather than many people in a couple of work/school groups. Our clusters look more like some kind of human-to-human transmission among people in relatively close contact. I suppose an indoor critter like spiders or fleas might be the culprit if the common environment was highly infested to the point where a large number of people in the building were bitten. That's odd enough, though, that you'd think we'd have heard.

That said, we actually don't know a lot about the clusters since they weren't intensely investigated. There could be any number of connections among patients that went unnoticed.

 

[Bob]

If the pathogen was transmitted by mosquitos or ticks, I'd expect to see the outbreak spread across a wider population -- several towns, for example, and less focused on a few indoor locations.

There have been a large number of documented outbreaks (something like 63). Has there been a study to see how many of those outbreaks were associated with indoor or outdoor environments? I don't think there's a suggestion that the Lake Tahoe outbreak was associated with an indoor environment, is there? Also, do we know how quickly ticks spread, and how persistent their infectious pathogens are? John Caudwell thinks that the Lyme disease has spread between his family members via contact with each other, rather than each of them being infected separately via a tick, and if that's the case then these pathogens may have two separate ways of spreading. Also, these sort of pathogens may be a factor in just a subset of ME patients; a range of pathogens may be responsible for triggering ME. There seem to be many unknown factors here.

 

[justy]

I'm not sure the idea of ME clusters caused by outdoor insects (or arthropods) flies very well. The clusters we know about tend to be focused on social groups collected in indoor areas -- hospitals, schools, concert halls. It's more workgroup-related than geographical. IIRC, the groupings of the cluster were less family groups (as would be expected with outdoor activity exposure) and more work/school groups.

If the pathogen was transmitted by mosquitos or ticks, I'd expect to see the outbreak spread across a wider population -- several towns, for example, and less focused on a few indoor locations. You'd see a couple of people in each of many work/school groups rather than many people in a couple of work/school groups. Our clusters look more like some kind of human-to-human transmission among people in relatively close contact. I suppose an indoor critter like spiders or fleas might be the culprit if the common environment was highly infested to the point where a large number of people in the building were bitten. That's odd enough, though, that you'd think we'd have heard.

That said, we actually don't know a lot about the clusters since they weren't intensely investigated. There could be any number of connections among patients that went unnoticed.

Yes I tend to agree with your analysis - I was just putting the idea out there and hadn't really thought deeply about it. The Royal Free Outbreak of course is famous for having been confined to medical staff working in the one hospital. I cant imagine a hospital environment as being a good place for insects...although nurses accommodation might be a different matter?

 

[SOC]

If a person is infected with Lyme bacteria, and they have ME-like symptoms, then they don't actually have ME, but they have Lyme, in which case the proposed study isn't relevant to ME, but it may help patients currently diagnosed with ME who are unaware that they have Lyme.

If a person was previously infected with Lyme bacteria but they have been treated, and still have symptoms then we already know that they were infected with Lyme bacteria, but they may have an unidentified coinfection. Again, this study isn't relevant to ME, but it may help patients diagnosed with ME, if there is a previously undiagnosed coinfection.

Is it possible to be infected with Lyme but fight off the infection naturally without antibiotics? If so, then the study may be relevant to ME because it might identify a post-Lyme syndrome that currently gets diagnosed as ME. This would help to create a subgroup of ME patients.

I think there's another important point a little buried here in Bob's post. We may need to distinguish between acute infections and chronic infections or post-infection syndromes. What ME may be is the the state that either causes or arises from the body's inability to recover from common infections.

Acute Lyme Disease that clears on it's own or with abx is not ME. Acute EBV infection that clears on it's own or with AVs is not ME. When we don't recover from those acute illnesses and fall into a state of chronic illness, the question becomes: why does that occur? Is it because we are not clearing the infection due to some kind of immune dysfunction? Is the infection cleared, but our CNS/ANS left in a damaged state? Either of those situations could present as ME.

Many doctors don't believe that chronic Lyme, or chronic EBV, or chronic HHV6 exist. Maybe they don't in the way these doctors are thinking. We rarely have signs of persisting acute infection (although many of us have recurring activation of latent infections). The symptoms of chronic infection, or damage from the acute infection are not the same as those of acute infection. Reactivations of latent infections are not the same as acute infections (see the differences between chicken pox and shingles).

So if you look at it one way, Lyme is not ME. Acute Lyme is definitely not ME. Persistent Lyme infection that is eventually cleared completely with abx, may not be ME. A persisting illness state originating in a Lyme infection that improves with abx, but is not completely cured probably is ME. Similarly for many other infections.

If we're going to argue about whether Lyme Disease, or EBV infection, or anything else is "real" ME, we should each be clear whether we are talking about the acute illness, or the uncommon persistent disease state after the acute illness and conventional treatment.

 

[Bob]

But if someone has a vector-borne disease, do they actually have ME? Surely not? If the vector-borne disease is treated then the ME-like symptoms may be resolved. (I'm not saying it's not a useful study.)

So then it may be a curable type of ME. The diagnostic criteria don't include being incurable, do they?

But some of the ME criteria say that other primary causes of fatigue should be ruled out, don't they? And I was thinking that if someone is infected with Lyme bacteria then they have Lyme disease. But, as others have pointed out, they are looking at a wide range of pathogens.

 

[justy]

But some of the ME criteria say that other primary causes of fatigue should be ruled out, don't they? And I was thinking that if someone is infected with Lyme bacteria then they have Lyme disease. But, as others have pointed out, they are looking at a wide range of pathogens.

other primary causes of fatigue SHOULD be ruled out, but we all know they are often, dare I say usually not ruled out?
No GP has ever wondered if I might have a vector borne disease and I was working as a gardener immediately before I became seriously ill. The point is these infections are so often missed and are much more prevalent than first thought. My concern is that M.E patients are hardly ever fully investigated to have other causes ruled out. Perhaps we all remember Julia Newtons Newcastle clinics figure of misdiagnosis - either 30 or 40% cant remember which, but both are way too high.

 

[SOC]

There have been a large number of documented outbreaks (something like 63). Has there been a study to see how many of those outbreaks were associated with indoor or outdoor environments? I don't think there's a suggestion that the Lake Tahoe outbreak was associated with an indoor environment, is there? Also, do we know how quickly ticks spread, and how persistent their infectious pathogens are? John Caudwell thinks that the Lyme disease has spread between his family members via contact with each other, rather than each of them being infected separately via a tick, and if that's the case then these pathogens may have two separate ways of spreading. Also, these sort of pathogens may be a factor in just a subset of ME patients; a range of pathogens may be responsible for triggering ME. There seem to be many unknown factors here.

Lots of good points there. I might be wrong, but I thought the Tahoe outbreak was closely associated with a school. I doubt we really know all the possible ways some of these pathogens transmit. Conventional "wisdom" is that Lyme does not spread person-to-person, but I doubt there's a solid research basis for that so-called wisdom.

In Lyme endemic areas you don't see a lot of acute Lyme in focused groups, you see a few cases spread across a large population. That fits with it not being transmitted person-to-person, but that's far from hard evidence. Cases like the Caudwells' where family members became ill over a period of years argue strongly against the tick-bite-transmission-only argument. The odds are very much against each of them running into an infected tick at different times. If they all got sick at the same time after an outdoor trip, that might be different.

I didn't realize there were so many documented outbreaks! I was thinking of the Royal Free, some hospital in CA, the orchestra group, Lake Tahoe. Others may indeed show a different pattern that would look more like a vector-borne pathogen. Was there a link to the 63 outbreaks in your post? If so, it didn't work for me. ETA: It works for me now. Probably brain fade. I had forgotten all the Iceland cases. I know nothing about how (if at all) the patients were connected in those outbreaks. Time to read up, I guess.

 

[justy]

I just wanted to say that I really enjoy reading your posts @SOC - always so concise and well reasoned.

 

[duncan]

@SOC , there is a big difference between acute and chronic states, and most clinicians just don't get that.

So the intersection shared between EBV and HHV-6 and Lyme etc, is likely not in their respective acute stages. It is in their chronicity.

This is really where the challenges of descriminating ME/CFS from chronic states emerge.

It's this intersection I cross daily, like the proverbial chicken crossing the road.

 

[Bob]

Was there a link to the 63 outbreaks in your post? If so, it didn't work for me.

Yes, see the link below. If you scroll down the page a little, you'll see some literature that mentions the 63 outbreaks:
http://forums.phoenixrising.me/inde...rch-literature-and-related-information.10282/

Edit: Actually, there's a list here:
http://www.name-us.org/ResearchPages/ResEpidemic.htm#M.E._Epidemics

The list ends at 1990 roughly at the time when ME was abandoned by the authorities and effectively subsumed into CFS by the CDC.

 

[SOC]

I just wanted to say that I really enjoy reading your posts @SOC - always so concise and well reasoned.

Thanks. It's all that training in writing and reviewing technical reports and engineering research papers. If only I could still do it consistently. Durned ME cognitive dysfunction has played hell with my ability to reliably communicate as effectively as I used to.

 

[SOC]

Edit: Actually, there's a list here:
http://www.name-us.org/ResearchPages/ResEpidemic.htm#M.E._Epidemics

Just skimming the list, it does looks like many outbreaks are associated with work groups and/or indoor environments -- hospitals, schools, convents, group living quarters. One mentions spread from a hospital to staff children to the children's teachers. Those cases look like person-to-person transmission, although some other environmental factor could be at play as in Legionnaire's Disease.

There could be other patterns in the rest of the outbreaks where a specific location was not mentioned in the brief write-up. One study mentioned many cases across Canada in the 1984-1991 period. That is very widespread.

I hope someday someone can find a way to dig into these outbreaks and look for patterns. I suppose what's more likely is that once ME is truly acknowledged officially as a serious illness, they'll do serious study on new outbreaks and forget about the old ones.