What evidence is there that ME/CFS is more autoimmune than chronic infection?

[duncan]

Jonathan, negative testing for Lyme in the UK might not be as meaningful as you tend to think it is.

 

[adreno]

The only sensical factor that can explain why some people get sick with ME from common viruses, while the majority doesn't, is the immune system. That, or an exceedingly rare undiscovered pathogen that somehow causes ME without leaving a trace.

 

[Jonathan Edwards]

Prof. Edwards, why would you expect the cytokine production to be brief? This is not what the studies of HIV and HCV showed, as Lipkin et al noted in their recent paper.

HIV and HCV are very unusual infections in that the immune system fails to control them and they not only produce chronic disease but it progresses to death (untreated). They are associated with obvious tissue pathology. Enteroviruses produce brief inflammatory episodes and the tend to sit around doing nothing or go away. Things have to be considered in realistic context. A loud clap of thunder is unlikely to be produced by a flea. A house falling down is unlikely to produce a whisper. Explanations need to be commensurate to the physical findings.

 

[Jonathan Edwards]

Jonathan, negative testing for Lyme in the UK might not be as meaningful as you tend to think it is.

Yes, but that is completely non-sequitur too. I thought that might come up. We were discussing potential denominator bias, not whether the test was right!!!!

 

[leokitten]

Exactly... we haven't talk in this thread about the chicken/egg issue here, it could be that the ability to control intracellular pathogens (viruses and atypical bacteria such as M. pneumoniae, C. pneumoniae) might actually just be a side effect of the autoimmunity which is in reality a type of immunodeficiency?

 

[duncan]

In the context of your observation that Lyme is seldom diagnosed in the UK, it is not a non-sequitur. It is relevant as it alters the equation's variables, at least potentially.

 

[msf]

No, it's not a non-sequitur, as there is not good evidence of absence of every pathogen that could potentially cause ME, I would use Yersinia as an example, simply because I know that the standard test for this in the UK was found to be inappropriate for chronic cases in the 1980s...The same point could be made about the Lyme testing in the UK, which at beast has something like 50% sensitivity. So when you put the poor sensitivity of Lyme testing alongside the fact that positive patients are excluded from the ME sample, it would seem likely that a sizeable proportion of those with ME-like symptoms actually have Lyme.

 

[msf]

Anyway, we had this discussion in the Lyme thread, and you put your faith in one study where they didn't find any cases of Lyme, and me and others put our faith in two or three studies that did. So I guess we will just have to wait and see who is right...

 

[Jonathan Edwards]

No, it's not a non-sequitur, as there is not good evidence of absence of every pathogen that could potentially cause ME, I would use Yersinia as an example, simply because I know that the standard test for this in the UK was found to be inappropriate for chronic cases in the 1980s...The same point could be made about the Lyme testing in the UK, which at beast has something like 50% sensitivity. So when you put the poor sensitivity of Lyme testing alongside the fact that positive patients are excluded from the ME sample, it would seem likely that a sizeable proportion of those with ME-like symptoms actually have Lyme.

It is non sequitur because the Lyme test was brought up on the basis that Lyme positive patients would be excluded and thereby the negative rate for the other 'ME' people would be artefactually high. But if nobody believes the Lyme tests indicate Lyme in the UK rightly or wrongly then they will not exclude these people so the original argument was irrelevant. The question of whether or not PWME have chronic Lyme disease is a different issue - which we have discussed on a Lyme thread and as indicated my problem there is that nobody has reported Lyme tests being more common in PWME as far asI know. We are back to evidence for absence or at least evidence for nothing more than in normals.

 

[Jonathan Edwards]

Anyway, we had this discussion in the Lyme thread, and you put your faith in one study where they didn't find any cases of Lyme, and me and others put our faith in two or three studies that did. So I guess we will just have to wait and see who is right...

Were there actually any studies that showed more positive Lyme tests in ME as compared to matched controls. I thought nobody had found that?

 

[halcyon]

Enteroviruses produce brief inflammatory episodes and the tend to sit around doing nothing or go away.

Except for when they don't, as in chronic myocarditis.

 

[duncan]

I think, Jonathan, your question if couched differently might get a different result. How many PWME have a history of Lyme infection vs healthy controls? I'm willing to bet that's a goodly high number vs healthy population.

As I have said earlier, it is simply a refection of how the machinery sometimes churns out ME/CFS diagnoses.

 

[MeSci]

The only sensical factor that can explain why some people get sick with ME from common viruses, while the majority doesn't, is the immune system. That, or an exceedingly rare undiscovered pathogen that somehow causes ME without leaving a trace.

It may ultimately come down to the immune system. There are a range of factors that could reduce immune competence, either temporarily or long-term, such as co-infections, malnutrition, chronic physical or emotional stress, etc. I'm sure Jonathan can tell me if am talking rubbish here!

 

[Jonathan Edwards]

Except for when they don't, as in chronic myocarditis.

I do not know a lot about chronic post coxsackie myocarditis but I had thought that the virus probably only hung around for a relatively short period, with inflammation and cytokine production and that the chronic illness was due to subsequent cardiomyopathy due to structural damage. People tend to show some degree of stabilisation or recovery after the initial episode (if they survive), which would seem to argue against continued inflammatory change.

 

[MeSci]

Who is LLMF? I didn't notice this member in the thread. Without knowing what there theory is, I'm not sure if Rituximab would be conflicting evidence, since a lot of the advocates of chronic infection talk about an auto-immune element in the illness.

I think LLMF was a typo, and @snowathlete meant the LLMD who was discussed at the start of the thread.

 

[msf]

Nope, no one says that they don't exclude people, they do, and these people are removed from the pool of people with ME-like symptoms. But they are also likely to miss a lot of people through false-negatives, again reducing the 'Lyme-signal' in ME-like cases.

 

[Jonathan Edwards]

I think, Jonathan, your question if couched differently might get a different result. How many PWME have a history of Lyme infection vs healthy controls? I'm willing to bet that's a goodly high number vs healthy population.

As I have said earlier, it is simply a refection of how the machinery sometimes churns out ME/CFS diagnoses.

YOu may be willing to bet, but do we have any evidence? Why is ME not more prevalent in tic infested areas in the UK? I have had tic bites in other countries but although I am an avid naturalist I have never met a tic in England. They say you need to go to the New Forest or somewhere, but the Royal Free is more in the middle of town!!

 

[Jonathan Edwards]

Nope, no one says that they don't exclude people, they do, and these people are removed from the pool of people with ME-like symptoms. But they are also likely to miss a lot of people through false-negatives, again reducing the 'Lyme-signal' in ME-like cases.

What do you base that on? I very much doubt my ME clinician friends exclude people on the basis of Lyme tests - they never even mention it. Do you know of others who do?

 

[duncan]

I can't speak to what is wrong with your ticks. I can say that you have them, though, and they are capable of transmitting Bb and B garinii and afzelii - and a small host of other virulent nasties. I can also address crappy TBD diagnostics, and both the US and the UK suffer from that little dilemma.

And how do you know ME isn't more prevalent in tick-infested areas? I suspect it is. It would be nice if someone respectable and trustworthy would venture a study on this.

 

[msf]

Umm, the NHS guidelines for ME?