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

Sidereal

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I don't think Lyme disease causing ME makes much sense epidemiologically. If it did, surely the endemic Borrelia areas in Central and Eastern Europe would have epidemic levels of ME compared to places like the UK, Ireland, Australia, parts of US etc. It's not like every second person in places like Austria is keeled over from ME.
 

duncan

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Sidereal, all those individuals diagnosed with Lyme - many if not most will not be told they have ME. The numbers blurr because of the conflicting diagnostics.

That is the reason I said true incidence should be calculated via evidence of exposure.
 

Jonathan Edwards

"Gibberish"
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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.

Nacul compared incidence in London, East Yorkshire and East Anglia and found the highest rates of ME is London. If ticks are really a major issue that they would have to be an issue in average rural areas with deer and badgers etc. which fits East Yorkshire and East Anglia pretty well. Esther Crawley practices pretty close to the New Forest, as do Stephen Holgate and George Lewith, so I think someone would have twigged if ticks were contributing significantly. I cannot see a mathematical model that is going to be consistent with the data we have.
 

duncan

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You are going to have higher incidence in London due to higher population. That's sheer volume. But bring Bb in as a factor, in suburban and rural areas, and I'm 'thinking the rate of incidence of ME relative to that Lyme population rises.

Pure speculation on my part, admittedly.
 

Sidereal

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Why, do they have epidemic levels of Lyme?

Of course. Estimates vary but generally speaking for each case of Lyme disease recorded in the UK you get like 100-300 cases in Central European places such as Austria, Slovenia, Germany, Poland etc. where you get bitten by ticks pretty much every time you go hiking (only slight exaggeration) and a high percentage of them (relatively speaking) are infected with Borrelia and other pathogens. Viral meningitis is very common after a tick bite, I knew several people who got this.
 

msf

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Do you have a source for that? And as I said before, do you know that the incidence of ME isn't comparatively higher there? And if it isn't do you know that there testing for Lyme is no more sensitive there?
 

Sidereal

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Sidereal, all those individuals diagnosed with Lyme - many if not most will not be told they have ME. The numbers blurr because of the conflicting diagnostics.

That is the reason I said true incidence should be calculated via evidence of exposure.

Yes, the problem is that we simply don't know how many of those diagnosed with Lyme or ME truly have Lyme. Since the lab tests are essentially a coin toss, all we have to go by is clinical judgement of dipshits such as the one described in the original post. Many alleged cases coming out of an American self-styled LLMD's office with a script for long-term antibiotic therapy have no recollection of a tick bite, no rash, no arthritis, no lab work showing evidence of infection, no nothing. Just a set of unexplained chronic symptoms that could be due to anything.
 

msf

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I think those who characterise the Lyme tests as a coin toss either do not know much about Lyme, or are being disingenous. The only one that fits that description (rather well, actually) is the ELISA. The others, i.e. the Western Blot and the LTT are much more sensitive and just as specific. Good LLMD's will use both these tests, and others to inform their diagnosis. so it is not (or shouldn't be) a purely clinical diagnosis. I don't think the fact that there are some bad LLMDs out there argues against going to see a good LLMD to rule out the possibility of Lyme.
 

Sidereal

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Do you have a source for that? And as I said before, do you know that the incidence of ME isn't comparatively higher there? And if it isn't do you know that there testing for Lyme is no more sensitive there?

I thought this was common knowledge among people interested in Lyme disease. You can read European reports like this one to get a sense of the scale of the problem over there:

http://www.eurosurveillance.org/ViewArticle.aspx?ArticleId=19906

A summary of the currently available epidemiological data is available in [3]. Epidemiological studies indicate the mean annual number of LB notified cases (including qualified estimates) in Europe is more than 65,400 (incidence rates per country range from less than one per 100,000 population to about 350 per 100,000 population). In Europe, LB occurs between 35 °N and 60 °N, and generally below 1,300 metres above sea level. However, there is strong heterogeneity in spatial distribution: the level of antibodies to B. burgdorferi sl is highest in residents of northern and central countries and lowest in those in the southern countries. In addition, at a local level, there is a focal pattern of distribution related to suitable tick habitat, including some hotspots where more than 100 cases per 100,000 population per year are recorded (e.g. parts of Slovenia, Germany and Austria, the Baltic coastline of southern Sweden, and some Estonian and Finnish islands).

In the UK in 2011, there were 1.73 recorded cases per 100,000 population:

https://www.gov.uk/government/publi...yme-borreliosis-epidemiology-and-surveillance

Also, the ticks you encounter there are more likely to be infected with Bb.

The most recent meta-analysis of surveillance data indicates that the overall mean prevalence of Borrelia infection in ticks in Europe is 13.7% (range: 0–49.1) although the prevalence is higher in adults (18.6%) than in nymphs (10.1%); Central Europe (Austria, Czech Republic , Germany, Switzerland, Slovenia and Slovakia) has by far the highest rates (in nymphs, >11%; in adults, >20%) [5]. In fact, peak prevalence has recently been confirmed between 5 °E and 25 °E longitude [8].

Testing over there is the same old ELISA/Western Blot. I know because my sample was sent to Germany.
 

msf

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From the first article you posted a link to:

Although LB is not a particularly new emerging disease, an accurate description of LB epidemiology in Europe is still not possible because few countries have made this disease mandatorily notifiable [3,9,36]. Unfortunately, there appears to be no plan to continuously monitor LB at the European level [37]; instead this is recommended only ‘Where the epidemiological situation in a Member State so warrants ...’, although such situations are not defined [38]. Therefore, surveillance statistics in Europe are based on non-standardised case criteria and uncoordinated systems of data collection [39,40]. Moreover, these data are inaccurate because patients with erythema migrans and other clinically diagnosed cases may be under-reported, the geographical distribution of referrals for testing is unknown, the criteria for serological diagnoses are not standardised, seropositivity due to past infection may be included, and data from remote regions may be lacking [41,42]. In addition, patients may be infected by one or two (rarely three) pathogenic B. burgdorferi genospecies and heterogeneity in symptoms caused by these various agents complicates surveillance.


Apart from testing (which is also affected by the strain of B. Burgdorferi, 'Lyme awareness' is also likely to play a part - in those countries where Lyme in common doctors will be more likely to diagnose it, exaggerating the difference between countries.
 

Sidereal

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I think those who characterise the Lyme tests as a coin toss either do not know much about Lyme, or are being disingenous.

It's called a figure of speech; I wasn't suggesting a literal 50:50 chance. Nonetheless, your comments are very interesting. Lyme advocates would usually be the first ones to say that Lyme testing is worthless when the tests come back negative which threatens to challenge their overvalued ideas of having a chronic Borrelia infection or their bizarre idea that 90% (or is it 95%?) cases of ME are caused by Bb.
 

msf

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Oh, and you didn't answer my query about the relative incidence of ME in the two countries.

I think these questions are relevant to a discussion of chronic infection in Lyme, but as we had the same discussion in the Lyme thread, I will return from whence I came!
 

Jonathan Edwards

"Gibberish"
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You are going to have higher incidence in London due to higher population. That's sheer volume. But bring Bb in as a factor, in suburban and rural areas, and I'm 'thinking the rate of incidence of ME relative to that Lyme population rises.

Pure speculation on my part, admittedly.

Oh come on Duncan, incidence is per 100,000 population. Let's get a little basic maths and logic into this.
 

Sidereal

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Apart from testing (which is also affected by the strain of B. Burgdorferi, 'Lyme awareness' is also likely to play a part - in those countries where Lyme in common doctors will be more likely to diagnose it, exaggerating the difference between countries.

Agreed very much. Still, I don't think it can account for the entire difference.

I don't think we have any good epidemiological data on ME worldwide so how can I answer your query but I think we would have heard about it if a considerable % of the Central European population were incapacitated by ME.
 

msf

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One final comment, I don't think making references to people's sanity or insanity is a constructive way to argue. In fact, it would seem to be in the category of ad hominem attacks, which as we know are often used by those who are losing the argument.
 
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