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Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

rosie26

Senior Member
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2,446
Location
NZ
Is Lyme an intracellular infection?

Edit: just checked, it is.
 
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justy

Donate Advocate Demonstrate
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5,524
Location
U.K
@Nielk - when I go to the link you put I get an English language pro health page, not a Norwegian site.

@SOC KDM has diagnosed me with - M.E which has become complicated by the presence of chronic bacterial intracellular infections. I know it is not exactly clear, to me that doesn't really matter much, I just want to get better.

He still uses the urine test mentioned earlier and is still concerned to test for and treat gut Dysbiosis/leaky gut issues as well. As I have stated numerous times - he tests widely and treats what he finds - I couldn't be any clearer on this point.

Another point re what he is finding in his patients - Lyme patients have started going to see him who know or suspect they have tick exposure as there is not much choice in Europe for treatment if you were exposed a long time ago or don't present in the classical early manner, or the usual 2 weeks treatment has failed. He is considered not just an M.E doc - he sees lots of people with complex unexplained illness - I met quite a few in his office who had travelled extensively abroad and may have picked up all sorts of things.
 

Effi

Senior Member
Messages
1,496
Location
Europe
@Nielk @justy I think the info on the crymedisease website was a written report that the author of that website made at KDM's keynote speech at the opening of the ESME Think Tank (European Society for ME) in Stavanger (Norway) in 2009. As you can see via the link I posted earlier, the author of the website can write in english, but it's a bit shaky, hence the incomprehensible report on the keynote speech. Apart from that, this is KDM's knowledge from six years ago... so I'd say it might be a bit outdated?

In 2012 ESME closed down and donations were given to the Rituximab Project in Norway: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=17758
 

justy

Donate Advocate Demonstrate
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Just to clarify the link that Nielk posted was to prohealth - hence the confusion.
 

msf

Senior Member
Messages
3,650
Prof. Edwards, what would be the point in consciously giving the study less power? And what would be the problem (other than financial) with using all the replicable tests together, as I suggested? Another reason to increase the number of tests would be to decrease the effect that a preponderance of either a certain type of Lyme, or a preponderance of patients with either Late or Early-stage Lyme in the patient cohort would have.
 

Helen

Senior Member
Messages
2,243
Tom Kindlon drew my attention to Dr. Abhijit Chaudhuri in this thread, where I quoted a study with him as a co-writer. The study might be of interest for the ongoing discussion in this thread.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Tom Kindlon drew my attention to Dr. Abhijit Chaudhuri in this thread, where I quoted a study with him as a co-writer. The study might be of interest for the ongoing discussion in this thread.
Fascinating, Helen. Thanks for the link. Apparently other researchers are also looking at the similarities, and it's clear that most of us in this community have a serious problem with immune modulation that affects our NK cells. I have done several tests for my NK cell count and function (with scary results) that attest to this issue.
 
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Jonathan Edwards

"Gibberish"
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5,256
Prof. Edwards, what would be the point in consciously giving the study less power? And what would be the problem (other than financial) with using all the replicable tests together, as I suggested? Another reason to increase the number of tests would be to decrease the effect that a preponderance of either a certain type of Lyme, or a preponderance of patients with either Late or Early-stage Lyme in the patient cohort would have.

I never said anything about not using all replicable tests. I think I said all available tests at the beginning. As many tests as are reliable. But you have to be careful how you use them because if you do lots of tests and see if any of them give a p value of less than 0.05 then you are effectively asking the same question several ways and so reduce your power that way because you have to multiply your p values by a Bonferoni correction. But all these details are irrelevant, I think. We just need to have any replicable tests available checked in PWME and unbiased matched controls.
 

duncan

Senior Member
Messages
2,240
Sorry, Jonathan Edwards, but I need to disagree with you. You are oversimplifying. It is just not that easy. To suggest otherwise seems to me to be ignoring (or unaware) of the profound polemics and disputes at play in diagnostics.
 

msf

Senior Member
Messages
3,650
Yes , I wasn't sure about the statistics, but I suspected that that would be the case.
 

msf

Senior Member
Messages
3,650
Prof. Edwards, since we are on this subject, and since you know much more about autoimmunity and general medicine than the rest of us combined, I imagine, could you explain how an autoimmune process could theoretically start with what seems to be, but isn't, an infectious onset? Are there are autoimmune diseases with similar onsets that don't have an infectious onset? As a layman, I find this hard to understand.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Sorry, Jonathan Edwards, but I need to disagree with you. You are oversimplifying. It is just not that easy. To suggest otherwise seems to me to be ignoring (or unaware) of the profound polemics and disputes at play in diagnostics.

What do polemics and disputes have to do with measuring something in two groups of people under carefully unbiased conditions? They are completely irrelevant to science. They must be completely irrelevant to the answer to the question we have been discussing - is Dr De Meirleir any where near right to say that 95% of people diagnosed as ME have Lyme. Polemics and disputes cannot play any part in tests that are validated by labs exchanging blinded samples and showing replicability - which is that basic standard for all tests in routine path labs not run for profit. We recently have a problem in that even organisations like NHS have disbanded the Public Health Laboratory Service and contracted out almost all pathology services but quality control can still exist if people insist on it.

There is no oversimplification that I can see here other than removing arguments where people want to have their cake and eat it. What seems to be pretty clear by this stage of the discussion is that the evidence needed to persuade serious scientists to take an interest in Lyme in ME is not available (somebody on PR always knows if it is). It is up to those who claim that Lyme is relevant to get down to doing the work needed to make their case plausible.
 

Marco

Grrrrrrr!
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2,386
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Near Cognac, France
is Dr De Meirleir any where near right to say that 95% of people diagnosed as ME have Lyme.

I'm not in this discussion but it reminds me of the claim that 95% of PWME were infected with XMRV. Given the constant complaints that ME/CFS were loose and porous a figure like that should have been an immediate red flag unless you want to park common sense.
 

msf

Senior Member
Messages
3,650
We might reflect on the fact that a lot of KDMs patients are from Norway and Sweden, which might result in him having more Lyme patients than a ME researcher working in somewhere were there aren't any forests (not sure where that would be, but geography will have an influence on this).
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Prof. Edwards, since we are on this subject, and since you know much more about autoimmunity and general medicine than the rest of us combined, I imagine, could you explain how an autoimmune process could theoretically start with what seems to be, but isn't, an infectious onset? Are there are autoimmune diseases with similar onsets that don't have an infectious onset? As a layman, I find this hard to understand.

Certainly, I have explained this a number of times on PR and for those who know that please ignore this repeat, but not everyone reads every thread and people come and go. The basic idea is that autoimmunity involves some sort of vicious cycle or positive feedback loop that involves B cell clones producing autoantibodies. These antibodies distort inflammatory responses in a variety of ways. One well known form is lupus. The immune system develops a loop that involves antibodies that block the normal functions of complement. One of those functions is to select further B cells to make antibodies to virus and not self. In the lupus patient B cells make antibodies without proper selection so they make lots of other autoantibodies and fail to make proper antibody responses to infections. As a result lupus often presents as a severe infection. At first it looks like any other infection but either clinical or lab signs show that it is the result of a lopsided immune system failing to deal with something that it should be immune to.

One idea for ME would be that a similar autoimmune loop has been set up some weeks or months before symptoms occur (we know that autoantibodies tend to be present in autoimmune disease weeks months or even years before symptoms). In the ME case these would be antibodies that programme a response to whatever infection next comes along which produces prolonged 'fatigeu' etc, because of persistent generation of perhaps some cytokines. Just as in lupus the infection would seem to be the 'trigger' but in fact the disease was lying in wait already - the virus just lit up the symptoms.