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

paolo

Senior Member
Messages
198
Location
Italy
@voner thank you so much for satisfying my curiosity. :)

Any of the Lyme experts out there know much about anti-neural antibodies? Is this something researchers are trying to use to show like some kind of post-Lyme autoimmune response?

I'm studying anti-brain antibodies, and in particular their relationship with Lyme disease (the chronic form). Moreover I'm doing some investigations in my own case. I think we should open another thread about this issue.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Prof. Edwards, given that even the NHS cite Lyme as one of the illnesses that have to be excluded before a diagnosis of ME can be made, and given that a number of ME physicians (KDM, Lerner, etc) have found significant numbers of Lyme cases in their patients, and that Lyme tests are notoriously insensitive, how confident can you be that the Lyme and the ME populations have been completely seperated out?

The study cited above will have the same drawbacks that I pointed out the Lyme vs ME spinal fluid study must have. This was in the thread about the Lipkin spinal fluid study. Basically, if the authors did a good job of seperating out the two populations, then what their hypothesis is a tautology. If they haven´t, then the significance of their findings can be called into question.

I agree that circularities or tautologies may be a major part of the problem here. I am happy to believe that people infected with borrelia develop long term symptoms that may fall within the diagnostic criteria of ME/CFS. But, as you say, if they have a diagnosis of Lyme disease then they are excluded from ME/CFS. So the issue - as raised originally in relation to Dr De Meirleir's claims - is what role does borrelia play in a group of people diagnosed as having ME/CFS on the basis of clinical features who have not been diagnosed as having Lyme disease, whether somebody has bothered to consider and test for that or not. It seems that De Meirleir is claiming that 95% of people who appear to have ME/CFS and have not been given an excluding diagnosis of Lyme, for whatever reason, have Lyme disease.

What we have in the literature is one study of such people that found no increase in evidence of borrelia infection above normal controls on tests. I am surprised that if physicians have found a significant proportion of cases referred as ME/CFS have Lyme results which are not found in normal controls in their lab's population that this has not been published. It would be of great interest to PWME and to me. If I have any role in ME it is to advise charities what research is worth following up and I can only do that if I have evidence in a form that I can assess for reliability - because people's money is involved. If there was evidence for borrelia being relevant to the ME/CFS population as defined above then I would want to discuss that with the international gathering of researchers coming to IiME at the end of May. Maybe Dr De Meirleir is about to publish something on this but until someone does things will be no further forward for the ME community as a whole.
 

duncan

Senior Member
Messages
2,240
I'm sensing some confusion or reluctance to embrace all the diagnostic maneuvering that is involved.

Perhaps a better question is what role do TBDs, in particular Borrelia, play in the development of new ME/CFS cases?

This is a complex question with many components, and many possible responses.

One thing that is certain: Borrelia IS relevant to the ME/CFS community, if only by virtue of the fact that ME is a default clinical diagnosis for countless non-acute Lyme patients. And by virtue of testing negative for Lyme, or testing positive post-treatment, or by testing IgM positive when protocol demands they test IgG positive, etc, these Lyme patients are divested of that diagnosis, and jettisoned into the ME/CFS community by decree of TWO sets of inadequate diagnostic criteria - one for Lyme, which abandons them, and one for ME/CFS, which welcomes them unconditionally when conditions should matter.

Moreover, Borrelia is relevant because such a significant portion of the ME/CFS community has been exposed to it; we know this because there are so many of us that can prove prior Borrelia infection with simple labs.This opens wide the possibility of Borrelia and other TBDs as candidates for causing ME/CFS.

I don't really know what else to say. I could write a small book about the ties between TBDs and ME/CFS. I truly am at a loss how any ME/CFS expert could be unaware of the daily trafficking in these two diseases, or of the potential role one has in the characterization and spread of the other.

Publication of papers serves a real purpose. I agree wholeheartedly. It's perhaps unwise though, to deny a reality, or ignore it, for want of a written word.

It IS interesting that nothing major has been published about this, though. I know some from the IDSA camp have published half-hearted comparisons, and there is talk about treatment protocol for PTLDS being crafted parallel to those the CDC promotes for ME/CFS (and we know what that means).

Is there a reason the IDSA wouldn't want such a tie? Would such a tie make it incumbent on the IDSA and Lyme researchers in general to pursue Borrelia as it morphs into ME/CFS - if it indeed does?

Sorry, just musing out loud.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
I'm sensing some confusion or reluctance to embrace all the diagnostic maneuvering that is involved.

Perhaps a better question is what role do TBDs, in particular Borrelia, play in the development of new ME/CFS cases?

Moreover, Borrelia is relevant because such a significant portion of the ME/CFS community has been exposed to it; we know this because there are so many of us that can prove prior Borrelia infection with simple labs.This opens wide the possibility of Borrelia and other TBDs as candidates for causing ME/CFS.

I truly am at a loss how any ME/CFS expert could be unaware of the daily trafficking in these two diseases, or of the potential role one has in the characterization and spread of the other.

Publication of papers serves a real purpose. I agree wholeheartedly. It's perhaps unwise though, to deny a reality, or ignore it, for want of a written word.

It IS interesting that nothing major has been published about this, though. I know some from the IDSA camp have published half-hearted comparisons, and there is talk about treatment protocol for PTLDS being crafted parallel to those the CDC promotes for ME/CFS (and we know what that means).

Is there a reason the IDSA wouldn't want such a tie? Would such a tie make it incumbent on the IDSA and Lyme researchers in general to pursue Borrelia as it morphs into ME/CFS - if it indeed does?

Sorry, just musing out loud.

I am embracing all of the diagnostic manoeuvres, Duncan. But we do seem to have a Catch 22. If the tests for Lyme are rubbish then nobody knows if these people have Lyme anyway. If they are not rubbish then they ought to have shown up in cohorts of ME/CFS patients. We cannot have it both ways.

Simple labs may show many PWME have been exposed to borrelia, but that tells us nothing if normal people show the same results - which is what is published so far.

I do not claim to be a ME/CFS expert. I get asked to help by ME charities because of my expertise in parallel fields. But the ME/CFS experts I have met so far do not think the borrelia connection is of interest. They are well aware of a lot of noise being made ( I am not sure what trafficking in two diseases means) but it never gets a mention at the scientific meetings I have attended. Maybe like me they would like to see some evidence in a form that can be judged for reliability. Without evidence for this 'reality' one has to remain agnostic. I do not know who the IDSA are and I suspect nobody in the UK with an interest in ME would. Whoever they are they do not seem very relevant to the discussion from a European perspective.

I am interested in all possible factors contributing to ME but I need to see some evidence to build on.
 

duncan

Senior Member
Messages
2,240
You are oversimplifying.

Tests can and do attest to exposure, and that is all one needs to speculate a correlation.

But you are entitled to your agnosticism.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
The Facebook and online Lyme forums/communities are groaning under the weight of people told they have CFS or M.E, without any further investigation (Lyme, co infections or otherwise) who then go on to discover for themselves that they have Lyme, begin treatment for it and recover or improve significantly. I am in touch with very many people who this is the case for.

The CFS diagnosis is being bandied around and everyone gets tarred with its brush. All these patients cant be wrong. They are not post treatment lyme disease patients but people who have spent 5, 10, 15 or 20 years house, wheelchair and bedbound with an incorrect diagnosis, who have never even been offerd any sort of Lyme test.
 

duncan

Senior Member
Messages
2,240
Jonathan Edwards: "I do not know who the IDSA are and I suspect nobody in the UK with an interest in ME would. Whoever they are they do not seem very relevant to the discussion from a European perspective"

Really?

You mean you are unfamiliar with who the IDSA are? That you are unfamiliar with reports that UK Lyme policy was basically a re-drafting of the 2006 Guidelines modified to allow for garinii and afzelii? That there is reportedly a great deal of dissatisfaction with that same UK policy, and that it is quite likely that many UK patients sick with a TBD are fairly confident they have ME/CFS?

That this same IDSA residue can be found pasted to Lyme policies throughout Europe? And that those same disenfranchised Lyme patients, one by one, country by country, seem to end up with an ME/CFS diagnosis?

To be so active in the ME/CFS community and to be so unaware of this connection is a remarkable accomplishment.

You REALLY never heard of the IDSA??? I can assure you they have heard of ME/CFS, because their physicians keep slapping their Lyme patients with an ME/CFS label..
 

Sidereal

Senior Member
Messages
4,856
The Facebook and online Lyme forums/communities are groaning under the weight of people told they have CFS or M.E, without any further investigation (Lyme, co infections or otherwise) who then go on to discover for themselves that they have Lyme, begin treatment for it and recover or improve significantly. I am in touch with very many people who this is the case for.

The CFS diagnosis is being bandied around and everyone gets tarred with its brush. All these patients cant be wrong. They are not post treatment lyme disease patients but people who have spent 5, 10, 15 or 20 years house, wheelchair and bedbound with an incorrect diagnosis, who have never even been offerd any sort of Lyme test.

Agreed. Unfortunately, it goes both ways. There are many others with an ME/CFS diagnosis who are told by dubious doctors that they have Lyme disease and are treated for years with heavy duty abx with no improvement or indeed deterioration in their condition.
 

voner

Senior Member
Messages
592
I am embracing all of the diagnostic manoeuvres, Duncan. But we do seem to have a Catch 22. If the tests for Lyme are rubbish then nobody knows if these people have Lyme anyway. If they are not rubbish then they ought to have shown up in cohorts of ME/CFS patients. We cannot have it both ways.

Simple labs may show many PWME have been exposed to borrelia, but that tells us nothing if normal people show the same results - which is what is published so far.

I do not claim to be a ME/CFS expert. I get asked to help by ME charities because of my expertise in parallel fields. But the ME/CFS experts I have met so far do not think the borrelia connection is of interest. They are well aware of a lot of noise being made ( I am not sure what trafficking in two diseases means) but it never gets a mention at the scientific meetings I have attended. Maybe like me they would like to see some evidence in a form that can be judged for reliability. Without evidence for this 'reality' one has to remain agnostic. I do not know who the IDSA are and I suspect nobody in the UK with an interest in ME would. Whoever they are they do not seem very relevant to the discussion from a European perspective.

I am interested in all possible factors contributing to ME but I need to see some evidence to build on.


I am curious, Dr. Edwards, if you were a ME/CFS clinician and not hamstrung by the NHS or insurance company oversight, and you had patients who had been sick for years and years and nothing seems to help them, but you are aware of the possibility of chronic Lyme disease, how would you proceed with your patients?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Jonathan Edwards: "I do not know who the IDSA are and I suspect nobody in the UK with an interest in ME would. Whoever they are they do not seem very relevant to the discussion from a European perspective"

Really?

You mean you are unfamiliar with who the IDSA are? That you are unfamiliar with reports that UK Lyme policy was basically a re-drafting of the 2006 Guidelines modified to allow for garinii and afzelii? That there is reportedly a great deal of dissatisfaction with that same UK policy, and that it is quite likely that many UK patients sick with a TBD are fairly confident they have ME/CFS?

That this same IDSA residue can be found pasted to Lyme policies throughout Europe? And that those same disenfranchised Lyme patients, one by one, country by country, seem to end up with an ME/CFS diagnosis?

To be so active in the ME/CFS community and to be so unaware of this connection is a remarkable accomplishment.

You REALLY never heard of the IDSA??? I can assure you they have heard of ME/CFS, because their physicians keep slapping their Lyme patients with an ME/CFS label..

Duncan,
I am used to working in a teaching hospital environment where nobody cares what is 'policy' except where it interferes with trying to practice good medicine - in which case we find ways to get around it. I doubt my colleagues in infectious disease have any interest in policies drawn up in the USA. Certainly in rheumatology I never had a clue who drew up policies in the USA because it was of no interest to me. And if the IDSA is so misinformed why the heck should I want to know anything about it? Surely the fact that I have never heard of them testifies to a focus on the evidence - which I am still waiting for. If I have evidence to indicate that borrelia is an important factor in UK ME patients then I am more likely to get busy stimulating research into it than bothering about bureaucratic rules.
 

Folk

Senior Member
Messages
217
The Facebook and online Lyme forums/communities are groaning under the weight of people told they have CFS or M.E, without any further investigation (Lyme, co infections or otherwise) who then go on to discover for themselves that they have Lyme, begin treatment for it and recover or improve significantly. I am in touch with very many people who this is the case for.

The CFS diagnosis is being bandied around and everyone gets tarred with its brush. All these patients cant be wrong. They are not post treatment lyme disease patients but people who have spent 5, 10, 15 or 20 years house, wheelchair and bedbound with an incorrect diagnosis, who have never even been offerd any sort of Lyme test.

@justy, I see your point, but simply increasing the diagnosis for lyme won't make up for the fact ME/CFS is being over diagnosed. Specially when there's nothing to prove it.

I mean, the only question here is: Are Dr. De Meirleir tests reliable or not? Being tested positive with those tests is a Lyme sentence or not?
If they are reliable then there's nothing more to talk about. If they aren't then it's pretty naive to think everyone with ME/CFS have Lyme.
On one hand Dr. De Meirleir seems to trust 100% the lab tests, on the other hand @Jonathan Edwards says the results are equal in ME/CFS patients and in Healthy people.

So... How to solve this?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I am curious, Dr. Edwards, if you were a ME/CFS clinician and not hamstrung by the NHS or insurance company oversight, and you had patients who had been sick for years and years and nothing seems to help them, but you are aware of the possibility of chronic Lyme disease, how would you proceed with your patients?

I would test all my patients for the available pointers to Lyme disease and compare with healthy controls and see if they were any different. If they were, I would publish in PNAS or NEJM and get lots of research grants. If they were not, I would forget Lyme (and publish in whatever journal would take the data). If I was a ME/CFS clinician I would probably have about 500 patients so I would have pretty good data to go on. Since it would be more or less no effort to do this I think I ought to do it before subjecting patients to unnecessary treatment.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
So... How to solve this?

Get everyone who has looked to publish. We need everything to be put on line for everyone to see. There should be a rule that any research investigation should be made publicly available. All the journals should be shut down. The problem is that biomedical scientists like brownie points. But the system is now so transparently corrupt that sooner or later it will collapse. The only question is what will rise from the ashes?
 

Kati

Patient in training
Messages
5,497
The problems I see is...
1) Labs who test for lyme are private. You need to pay lopts of money to get tested for
Lyme. Moreover these diagnostics are not FDA approved. Moreover these techniques have not been replicated by independant teams. "But it could still be Lyme" if you test negative and the dr start treatment is in my view wrong

2) as someone mentioned, indeed. If you see a certain dr, you have ME/SEID. If you see another one (or any Lyme dr for that matter, you have Lyme. and they are willing to make the diagnosis even with a negative Lyme test. I disagree with that.

3) the fact that the Lyme groups claim that multiple sclerosis, Alzeimer's, ME/SEID, fibromyalgia, autism and a handful of other serious diseases are in fact Lyme is in my view very disturbing.

4) Antibiotic therapies are not benign. Antibiotic resistance is a big problem out there and very little is happening in term of new antibiotic discovery. It's a fact. Overtreatment with antibiotics (for viral illnesses for instance) is a problem. I read some cases of tendon dammage with Levofloxacin, which is not benign.

5) is the science surrounding Lyme disease sound? Who is right in this case? Why it has not been allowed to make progress? Why are mainstream physicians so reluctant to accept Lyme in theor choices of diagnosis? (Part of it is due to poor diagnostics, but there is more to it. )
 

Kati

Patient in training
Messages
5,497
Get everyone who has looked to publish. We need everything to be put on line for everyone to see. There should be a rule that any research investigation should be made publicly available. All the journals should be shut down. The problem is that biomedical scientists like brownie points. But the system is now so transparently corrupt that sooner or later it will collapse. The only question is what will rise from the ashes?
What do you mean "the system is now so transparently corrupt"?
 

voner

Senior Member
Messages
592
I would test all my patients for the available pointers to Lyme disease and compare with healthy controls and see if they were any different.

I guess that brings us to the point that the test for Lyme disease are very controversial. I guess it's up to the individual clinician to determine those "available pointers"? And as patients, what are we to do? Most of us don't have the technical expertise to determine if these tests are valid or not no matter how much research we do on it. So we are left with the question, "how much do we trust the clinician" and how much money do we have available to spend on this possible search down a rat hole.

To me, it still seems to be a roll of the dice dependent also on how much time and money we have to spend on the problem.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
What do you mean "the system is now so transparently corrupt"?

Since 'bibliometrics' (judging scientists by the points they score on publications and citations) has become the basis for continuing salary funding and grants biomedical science has become largely driven by people trying to score bibliometric points. (All you need to do is keep publishing papers that cite your own papers and your citation index gets bigger and bigger like a Ponzi scheme.) Many have no particular moral scruples about how they do that. So a very high proportion of what is now published, including in the 'high profile' journals is not just bunk but manipulated bunk. There was a thread about ameeting recently held in the UK by the people in charge to try to sort out what to do about it. But nobody wanted to be the first to make a move.
 

Folk

Senior Member
Messages
217
Well there's also the fact that in a survey made with patients of a bunch of ME/CFS speciallist. Dr. Kenny De Meirleir had the best results, with 75% of his patients claiming they improve with his treatment.

That goes beyond the placebo effect.

Since most of his treatment focus on Lyme.
Wouldn't that count for something?