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

[Jonathan Edwards]

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.

Dear Voner,
I appreciate that. But in general a test is only worth taking treatment on if it is something that major labs can agree on and check for quality control by swapping samples blinded. Beyond that lab tests are so easily overinterpreted that I would steer well clear. I understand that people want answers but there is no use in an answer that is based on junk.

Maybe the best way to judge what to do is to do exactly what we are doing now - exchange sceptical ideas about tests and treatments and see where the margins of knowledge are.

And to do that on an open and equal basis I think it helps if we keep away from veiled references like 'some people do not seem to understand' (and this is NOT a veiled reference to you). Real scientific discussion comes from politely addressing each other in the first person!!! It is from frank argument like this that all my own successes in research derived, and however much one person thought someone else was stupid we had a rule that you responded directly in the first person and politely. The real breakthroughs came when someone realised that the other person might not be so stupid after all.

 

[Sushi]

Are Dr. De Meirleir tests reliable or not? Being tested positive with those tests is a Lyme sentence or not?

As his patient he had me tested for Lyme and co-infections by 3 different labs, using a total of 4 different testing approaches, as he knows that no one method is completely reliable. He also looked at other blood markers and did a physical exam (for marks of Bartonella). Since I had a positive for Bartonella by PCR that was then genetically sequenced, skin markers and other blood markers, and I had a history of known tick bites, he felt treatment was justified.

1) Labs who test for lyme are private. You need to pay lopts of money to get tested for Lyme.

This seems to vary by country. One private lab was covered by Medicare, others I paid out of pocket.

Sushi

 

[duncan]

Demonstrating a link, causal or otherwise, between Lyme and ME/CFS would be a major achievement given not only the questionable reliability of diagnostics, but the "rules" as they apply to those diagnostics. I suspect a lot of resistance.

But it would be a cool thing to try. It would be a good cause.

Treatments become a whole other set of issues, again tying back into WHY things are working in the first place for some, and not for others. And where ME/CFS materializes and Lyme evaporates. Or visa versa.

It would be a good project, if resources could be generated for it.

 

[voner]

But in general a test is only worth taking treatment on if it is something that major labs can agree on and check for quality control by swapping samples blinded

So , what test for chronic or acute Lyme disease satisfy these requirements of yours?

 

[Kati]

As his patient he had me tested for Lyme and co-infections by 3 different labs, using a total of 4 different testing approaches, as he knows that no one method is completely reliable. He also looked at other blood markers and did a physical exam (for marks of Bartonella). Since I had a positive for Bartonella by PCR that was then genetically sequenced, skin markers and other blood markers, and I had a history of known tick bites, he felt treatment was justified.
This seems to vary by country. One private lab was covered by Medicare, others I paid out of pocket.

Sushi

If the 3 different labs are not supported or approved by FDA, and if there are conflicts of interests within these labs, what does it really mean? For instance, the CEO of Igenex is the president of ILADS. Do you view this as a conflict of interest? Why or why not?

 

[duncan]

Conflicts of interest matter. They matter in treatments. They matter in diagnostics.

And they play a large role in the Lyme Wars.

In the US at least, look to the 1980 Bayh-Dole Act for how conflicts of interest may have penetrated the government and key academic institutions.

How do they matter? They can play a role in determining who gets research grants - or what research is considered at all. They can influence public policy. They can levy pressure on media to interpret a disease or policy in a certain way.

They can matter in many ways.

ETA: The CEO of Igenex is Nick Harris. I don't think he heads ILADS, but I could be wrong.

 

[Sushi]

If the 3 different labs are not supported or approved by FDA, and if there are conflicts of interests within these labs, what does it really mean?

Only one of the labs I used is in the US, the others are in two other countries. I agree, lab testing is not without problems but I have responded to treatment so I am hoping that I am going in the right direction.

Sushi

 

[Valentijn]

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?

It sounds like it's Infectolab's test which you want to have a debate about. Dr de Meirleir is not involved with that lab or test at all as far as I know, except as a user of that test, as are many other clinicians.

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.

There is a research paper indicating that the Borrelia LTT-Elispot is reliable. You have been told this and given the link for this paper repeatedly.

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?

It probably depends on the testing methods used. The CDC method is hopelessly inadequate for pretty much anything. Though I would like to see the Borrelia LTT-Elispot used in ME/SEID patients versus healthy controls.

 

[Valentijn]

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

FDA approval isn't relevant at all in Europe. I'm not even sure how relevant it is in the US - does it guarantee accuracy, or does it guarantee that it won't kill people?

Regarding private labs ... they aren't particularly expensive. They just cost more than when you get the test for free via nationalized health care. I suppose the solution would be for governments to develop and/or test accurate Borrelia diagnostic methods, and make them available to the public. Somehow I don't see that happening anymore than I see appropriate symptomatic care for ME/SEID being implemented on a national scale.

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.

If someone said it, it must be true?

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.

It's pretty unlikely, agreed. But I wouldn't be disturbed by it - it's just a hypothesis. It can't hurt you. And there's no harm at all in investigating it, though I think it would be quite stupid to treat for a presumed Borrelia infection based solely on having symptoms of one of those diseases.

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.

The vast majority of overuse of antibiotics is in the food industry. And there actually is a fair bit going on with new antibiotics. I also don't think anyone is treating long-term antibiotics as benign, but when someone has a confirmed or extremely likely long-term infection, antibiotics are an absolute necessity. They're even used long-term to treat severe acne - what's the huge opposition to long-term antibiotic treatment in ME/SEID patients specifically, especially when there's a solid indication for it?

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. )

It exists, and it's acknowledged by all parties that it can cause serious problems. But at the same time, one faction denies that it can continue to persist after a short course of antibiotics, and/or that symptoms can persist after that treatment. Many infections are acknowledged as being able to cause permanent damage, so the refusal to believe that Lyme can do this is beyond bizarre.

It might be similar to the BPS group refusing to believe that ME/SEID can present with neurological signs and symptoms. They have a strong faith that the disease is a certain thing, and any experience which deviates from it must be incorrect or psychosomatic.

 

[paolo]

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.

This is what I've witnessed so far in ME patients that I know personally.

Patient 1 (SC). Female, 36 yo. CFS diagnosis in 2012. Positive IgG for VlsE lp of borrelia in 2014
Patient 2 (SM). Male, 43 yo. CFS diagnosis in 2011. Positive IgG for VlsE lp of borrelia in 2014
Patient 3 (LA). Male, 50 yo. CFS diagnosis about 20 years ago. Positive serology and LTT for borrelia in 2014
Patient 4 (AM). Female, about 60 yo. CFS diagnosis about 20 yers ago. Positive spinal fluid for borrelia about 10 years ago
Patient 5 (MB). Female, 45 yo. CFS diagnosis in 2011. Positive PCR for borrelia in 2014
Patient 6 (PM). Male, 35 yo. CFS diagnosis in 2013. Positive PCR for borrelia in 2014
Patient 7 (TS). Female, 38 yo. CFS diagnosis in 2008. Positive LTT for borrelia in 2014
Patient 8 (LA). Male, 34 yo. CFS diagnosis some years ago. Positive for ehrlichia and suspect of seronegative Lyme
Patient 9 (LB). Male, 32 yo. CFS diagnosis some years ago. Positive for rickettsia and suspect of seronegative Lyme
Patient 10 (AP). Female 50 yo. CFS diagnosis ten years ago. Positive LTT for borrelia. Recovered with antibiotics
Patient 11 (CS). Male 28 yo. CFS diagnosis some years ago. Positive LTT for borrelia.

The following is a study about Lyme disease in 210 ME patients:

http://www.iacfsme.org/LinkClick.aspx?fileticket=GbFVAJNkM2U=&tabid=458

 

[paolo]

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.

Hi Folk, where did you find these results? Thanks

 

[Folk]

It sounds like it's Infectolab's test which you want to have a debate about. Dr de Meirleir is not involved with that lab or test at all as far as I know, except as a user of that test, as are many other clinicians.

The thread is not about many other clinicians, neither many other clinicias are claiming 95% CFS/ME patients have Lyme.

There is a research paper indicating that the Borrelia LTT-Elispot is reliable. You have been told this and given the link for this paper repeatedly.

Really? Don't remember it.

Hi Folk, where did you find these results? Thanks

Hi paolo.
It's here http://webcache.googleusercontent.c...14/05/ME-Nat-Norwegian-Survey-Abr-Eng-Ver.pdf

 

[msf]

I agree about the circularity, Prof. Edwards. In one of his YouTube videos KDM talks about the dangers of this. If ME is a diagnosis of exclusion, then whatever actually causes the majority of cases will be treated as one of those exclusionary diagnoses, at least until the consensus changes.

Actually, the evidence for Lyme in substantial numbers of ´ME´ patients is there, but only in an indirect and suggestive way. I´m referring to this paper:

http://www.treatmentcenterforcfs.co...ment-of-142-herpesvirus-patients-with-CFS.pdf

Since the hypothesis of the paper was that herpes viruses cause ME, the Lyme and other TBIs angle was underplayed.

The paper states that the patients were randomly selected from his patient population. The Lyme and other TBIs group made up about 25% of this randomly selected group.

As I pointed out earlier in the thread, it is likely, given what we know about the insensitivity of Lyme testing, that the true percentage of patients with signs of exposure to Lyme would be higher.

Of course, these patients were randomly selected from a population who had some signs of herpes reactivation, and who had been treated for at least 6 months for it, so we get back to the problem of subsets and exclusionary criteria again.

 

[msf]

There was also the Shor paper that Paulo mentioned above. Both of these papers were published several years ago now, and there have been no efforts to confirm or replicate their results.

 

[justy]

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?

Just to be clear AGAIN. Most of KDM's treatment does not focus on Lyme. He tests people and then treats based on those results and clinical history. Each patient may have a different profile and hence different treatment plans - this is actually his strong point.

The TESTS he uses are also not 'his' tests, they are the same as the tests used by all the ILADS Dr's who treat Lyme and co infections. There are Drs in the UK who use these tests. they are also widely used on the US, France, Germany to name but a few.

 

[duncan]

Jonathan Edwards: "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."

To make it meaningful, you'd have to abandon CDC diagnostic criteria. You'd need to toss out earlier negative diagnoses as useless since a significant portion of them will have been made in error. You could not accept just a positive/negative reading. You couldn't really use the ELISA because it's just that bad. So you'd have to use the WB and C6 and European tests like the LTT ( I have little familiarity with the latter). You'd have to examine with an eye to exposure only, unless you adopt an entirely new scheme - say, one or two Bb specific bands, regardless of IgM or IgG to qualify as positive - which would be fine, but you'd be met with fierce and personal attacks.

You'd have to look into what % of healthy controls who demonstrate previous exposure have truly "recovered", as opposed to adjusted. That is, you'd have to extricate yourself from the misuse of commonly accepted terms, and reclaim them for your paper - words like "chronic" and "active" and "recovered", and "major" vs "minor".

This is assuming you could get funding for the research. I doubt you could. You'd be stepping on too many toes attached to too many big people. So, if you used your own patients -say those 500 you alluded to - and you managed to disentangle yourself from the Lyme-speak that has accrued over 30 years...And could develop a diagnostic rule book that worked because it had divested itself of conflicting interests and inherent tautologies...You'd STILL have to find a journal that would publish your study. That would be no small feat in and of itself.

But I like the idea. I think the idea is a good one.

 

[Valentijn]

Really? Don't remember it.

Of course not. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/

 

[Jonathan Edwards]

This is what I've witnessed so far in ME patients that I know personally.

Patient 1 (SC). Female, 36 yo. CFS diagnosis in 2012. Positive IgG for VlsE lp of borrelia in 2014
Patient 2 (SM). Male, 43 yo. CFS diagnosis in 2011. Positive IgG for VlsE lp of borrelia in 2014
Patient 3 (LA). Male, 50 yo. CFS diagnosis about 20 years ago. Positive serology and LTT for borrelia in 2014
Patient 4 (AM). Female, about 60 yo. CFS diagnosis about 20 yers ago. Positive spinal fluid for borrelia about 10 years ago
Patient 5 (MB). Female, 45 yo. CFS diagnosis in 2011. Positive PCR for borrelia in 2014
Patient 6 (PM). Male, 35 yo. CFS diagnosis in 2013. Positive PCR for borrelia in 2014
Patient 7 (TS). Female, 38 yo. CFS diagnosis in 2008. Positive LTT for borrelia in 2014
Patient 8 (LA). Male, 34 yo. CFS diagnosis some years ago. Positive for ehrlichia and suspect of seronegative Lyme
Patient 9 (LB). Male, 32 yo. CFS diagnosis some years ago. Positive for rickettsia and suspect of seronegative Lyme
Patient 10 (AP). Female 50 yo. CFS diagnosis ten years ago. Positive LTT for borrelia. Recovered with antibiotics
Patient 11 (CS). Male 28 yo. CFS diagnosis some years ago. Positive LTT for borrelia.

The following is a study about Lyme disease in 210 ME patients:

http://www.iacfsme.org/LinkClick.aspx?fileticket=GbFVAJNkM2U=&tabid=458

That is interesting paolo, but there are no controls either for your personal experience or the bulletin report. We need to know that healthy people do not come up with the same results.

 

[Jonathan Edwards]

But I like the idea. I think the idea is a good one.

I am glad you like the idea. I don't think it would be that complicated or cost anything much. After all someone has already done this and found no difference from normals.

 

[Jonathan Edwards]

So , what test for chronic or acute Lyme disease satisfy these requirements of yours?

I have no idea because I am neither an ME doctor nor a Lyme doctor, but whatever is regarded as replicable. It does not actually matter much for what I suggested -I would simply be looking for confirmation that more PWME than healthy controls had some laboratory evidence of borrelia infection. It is the comparison to controls that seems to be absent from all the stuff suggesting that PWME have significantly positive tests. Using a blinded control is just the most basic quality control procedure and without it we do not have anything reliable to go on as far as I can see.