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

Antares in NYC

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Antares, I didn´t realise that they used xenodiagnosis in the macaque study, that´s interesting. From my Reading of it though, the monkeys were still alive when the ticks fed on them (I would think it would be hard to convince a tick to feed on an animal that wasn´t alive or very recently deceased).
You are right, I got that impression when I first read the abstract. Last night I read the full paper out of curiosity and noticed that the monkeys they sacrificed and the monkeys they used to feed blood to the lab ticks were not the same.
Just different monkeys ;-)

Nonetheless, the results of the study stand as terrifying to me. The bb spirochete is one resilient and scary organism.

I find it beyond irony that the response from Wormser, Steere et al. was to claim that animal studies should never be extrapolated to human models. They sure have brass ones, I tell you, and they seem to stop at nothing to protect their turf.
 

Antares in NYC

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The import and message of the Klempner study had more than a decade to disseminate, to, in effect, take hold and spread without substantive refutation. To see findings go unchallenged and mature into dogma.

Of course, Monica Embers and friends demonstrated that spirochetes do survive after conventional treatment. To do this, they had to work directly with tissue, as opposed to the study of Klempner et al, which relied heavily on SF-36 survey results. But it's hard to make up for an 11 years' head start...
Hi Duncan,
Thanks for sharing the background story behind that study. While I'm familiar with the immoralities and utter ratf#ckery that took place behind the scenes of the "Lyme Wars", holding back such definitive and undeniable proof of borrelia persistence takes the cake. One more reason to be cynical about any faith in humanity, frankly. (Sorry I'm so jaded lately.)
 

Jonathan Edwards

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I am quoting from the letter,

Anti-neural antibody response in patients with post-treatment Lyme disease symptoms versus those with myalgic encephalomyelitis/chronic fatigue syndrome

http://www.ncbi.nlm.nih.gov/pubmed/25866194

i'm wondering what is wrong with these authors methodologies? the sample sizes are small, but what else? To me, They seem to have done what you suggested, comparison of ME/CFS patients to healthy controls. they also saw that in a previous study they compared "chronic" lyme patients with healthy controls.

Yes, but if I am reading it right what they compared were anti-neuronal antibodies and found that ME patients were the same as normals. They do not say anything about testing ME patients with Lyme tests do they? I think they are assuming that ME patients are different from Lyme patients.
 

Jonathan Edwards

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Since many of our UK members complain about not being able to find doctors in the UK who know anything about ME, perhaps you would be willing to provide a list of these many doctors. It would be a great benefit to the PR UK cohort, most of whom are suffering with no medical care at all for their ME because they can't find all these doctors you speak of. A simple list of names would be sufficient as I am sure the patients would be more than willing to do the extra legwork of finding the locations and contact information of these valuable doctors.

Dear SOC,
The problem is that the doctors I do know are totally snowed under by the service load they have. They are also required to see patients through locally agreed commissioning systems. The NHS does not allow for any patient to see any doctor anywhere (although ironically before the 'internal market' it did). Spreading names around the internet simply causes anxiety and disappointment. If these physicians have private practice it is not up to me to recommend them. Note that I have no way of knowing whether or not they provide good care. I simply know their knowledge of the scientific side.

I am well aware of the shortage of ME care in the UK. If there are 200,000 patients we probably need 1,000 physicians to do regular ME work. Maybe there are 100, of which I know of maybe a score in total, some of whom are retired.
 

Jonathan Edwards

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Prof. Edwards, the problem, as I´m sure you´re aware, of using any ´replicable´ Lyme test for the kind of study we are talking about is that if it is not sufficiently sensitive it will reduce the power of the study, so that, if those with ME (CCC) and those with CFS (Fukuda) criteria are confounded together, then the ´positive´ signal from the study might be reduced to a non-significant one.

Since we are looking for some sign of Lyme exposure, not to determine current infection, the most sensitive tests should be used. Unlike Shor´s study though, I don´t think we should include tests of non-specific immune function, such as C6 and CD57, since we don´t know whether these are altered in other disease states yet. Rather, the study should use all the current tests for Lyme.

Dear msf,
Replicability does not have anything to do with sensitivity. If a test is not replicable then there is not much point in using it, whatever its sensitivity. Tests with limited sensitivity will reduce power, yes, but with a cohort of say 200 then that should not be an issue. The ME physician doing the study could make sure they are using strict criteria. If nothing comes up with any replicable test then I don't see how someone like Dr De Meirleir can suggest that he knows that most PWME have Lyme. The Catch 22 is very simple. If anyone can work out the relation of Lyme the ME they must have access to the tests we need to do the screen I was suggesting. Maybe De Meirleir has done that but it is a bit strange that it is not public. I have never personally found any need to keep data confidential. I have always presented data as soon as it was available and I never had trouble getting it published subsequently.
 

voner

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Yes, but if I am reading it right what they compared were anti-neuronal antibodies and found that ME patients were the same as normals. They do not say anything about testing ME patients with Lyme tests do they? I think they are assuming that ME patients are different from Lyme patients.


I am really not trying to make any point here, rather I'm trying to understand what this study did or did not do. no, they did not test their ME/CFS patients for lyme, and fact they preselected patients with history who did not indicate Lyme exposure. so what did the study show? that the authors have the ability to select ME/CFS patients without Lyme exposure ( as has been previously suggested in this thread, I think)?

maybe we can get Dr. Vernon to talk about it?

I think the only known fact in this whole Lyme & ME/CFS quagmire is that significant percentage is of ME/CFS patients are seeking treatment from doctors who diagnose them as having "chronic Lyme", despite all warnings and protests of the standard medical community and, at this point, standard medical community can offer these patients no treatments other than behavior modification.
 

Nielk

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@Jonathan Edwards

Kenny De Meirleir and Think tank!

Professor Dr. Kenny Kenny working diligently to collaborate with experts worldwide.. Kenny De Meirleir is Prof. dr.medisin. He is medisnsk director both in Belgium and the USA. He has treated more than 20,000 patients and has a unique position with good access to data.

In 2009 he joined a group called Think Tank which several ekspterter worldwide began to cooperate to find more answers on ME / CFS riddle. Luc Montagnier were those who gave their support to this "Think Tank" which had its first meetings back in 2009.

Luc Montagnier of France, says, "Scientists havealready uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes." Montagnier, one of the discoverers of the HIV virus, is a supporter of the Think Tank. "

European Think Tank Forms two Generate Research Establishing ME / CFS as Organic Illness


Kenny De Meirleir has worked with ME / CFS is now underway with new research. Here is a small summary from a radio interview from a amrkikansk radio show:

"1- patients with ME / CFS and chronic Lyme are the same, since they show the same abnormalities. He explains that Lyme and other infections that Bartonella (which claims to have 33 known strains) inmunodeprimen, lowering Th1 immune response (as combat intracellular infections), and that this leads to chronic inflammation and reactivation of herpes virus this creates a vicious circle. Explaining that in reality this disease is very homogeneous at the time of the survey, which "is not so difficult."

2- What is a bacterium (Borrelia) found in the tissues and that inmunosuprimirte may not make antibodies and therefore blood sample available is just not reliable.

3. It will be published within a few months has conducted a study with 140 patients and 140 controls, with four markers with an efficiency of 97% is able to detect them called "Chronic Lyme patients fatigue" or "patients with chronic fatigue and Lyme. "

4. Considering that Lyme now, is analogous to that in his time anyway HIV until pathogen was found, or multiple sclerosis (before it was discovered to be a real disease). Prepare the connection that medicine is very conservative, and that on the one hand it protects the population, but when does this situation occurs, and says that in this case is to commit fraud.

5. Shown hopeful about the future in relation to the better treatment of Lyme. Explain that in a few years (4-5) will be very effective treatments (which he says he is working with his team in Reno --instuto WPI, where he is director) to activate and / or deactivate certain receptors, bacteria (one Sort role play their LPS) used. He says that this way is much more promising than just "interfering" with bacteria (pointed: I guess refers to antibiotics, for example).

6. Explain it has nothing to do with acute chronic infection, which is so different diseases; And typical of chronic inflammation Lyme is chronic, and thus different from acute inflammation which is known in medicine where PCR is usually elevated. Here however cascade of prostaglandins which are very active there (are almost always elevated PGE2).

7. Explain how baton ella other infections is to be looked upon with great interest, as is often thought of it as "opportunistic" to Lyme, and sometimes responsible for the symptoms. Said to affect endothelial (blood vessel wall) and therefore normally increases VEGF.

8. He says that in Europe there is hardly Borrelia burgdorferi (and the US), but other strains, of which very little is known about their behavior in man. In this regard, pointing to global warming as a cause of this spread of Lyme, since there are many more such ticks since 50. He instances Norway.

9. As for treatment, explaining that are based on: 1. Eliminate infection (which is very difficult), 2nd enhance Th1 response and reduce inflammation 3. Seek (ie cytokine storm).

10. Explain how steroids are absolutely contraindicated in infections, as you learn in medical school (Personal Point: Can not immunosuppress a patient suffering from an infection).

11 patients often have low levels of esteriodeas hormones such as cortisol, due to neuronal inflammation.

12 explains that the key is the wall of the bacteria, formed by lipoporisacáridos (LPS), which forms the outer wall of gram negative bacteria such as Borrelia. (I recommend this abstract on this topic: http://www.ncbi.nlm.nih.gov/pubmed/3577475). In this regard, said Borrelia has a special LPS, which is where its ability to create inflammation, etc. Therefore believes that the answer is in this molecule.

13. Clarifies that many operators never develop the disease, suggesting a genetic component.

14. When the interviewer asked, what do you recommend to those seeking answers, is to try to find physicians with a comprehensive view. Specifies that this is not "just infectious" multisystem disease, and there is still this specialty. Think over time it will evolve. For example explains how it is not logical that a patient with 20 to 20 different diseases have symptoms ... "


Here's an old statement - (I've put in / lyme since it is the same abnormalities) ..

"A number of discoveries recently made. The first surplus in "deep sequencing" shows that ME /Lyme patients suffer from many infections, so they carry many infections, many more than healthy people. I think that this will be evidence that the immune system is not functioning as it should. I think this will soon be published. "

Kenny Kenny made some videos for a couple of years ago some interesting videos about ME / CFS (umbrella diagnoses) There is much interesting in these videos, but research everything goes fast forward. Many of the videos have helped me to understand a lot more, but we must get massive research on people with unromale immunity more.

Informative videos from Kenny De Meirleir. Remember ME - Lyme same abnormalities..

1. Is ME and / or CFS a disease?
2. Is it possible two Diagnosis ME / CFS?
3. Is ME A heraditary conditioning?
4. ME and sleep disorders
5. Me and pain
6. ME and hormones
7. ME, the immune system and several at virusses
8. ME and blood circulation
9. ME and Gastrointensional problems
10. ME, Co morbidity and Exclusion Criteria
11. Twelve answers two questions - ME origin and Causes
12. Misdiagnosis / Related Diagnosis and Tests
13. Sleep, Pain and nigthmare
14. ME and Treatment
15. ME, Remody and Hope
16.ME and Low - Dose Naltrexone (LDN)
17. ME and Brain
18. ME, Th1. Th2 and Th17
19. Subgroup of Patients

Parts also some nice videos that were made when he visited New York. These vidoes gives more hope for the future!
 

justy

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Thanks @Nielk. I am not sure that helps much; it barely makes sense - or was that the point?
I thought it looked like a google translation until I went to the link. The linked page is in English, but doesn't say the same as the extract Nielk copied. @Nielk where did that come from?

By the way your irony is not lost on me ;)
 

Antares in NYC

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Thanks @Nielk. I am not sure that helps much; it barely makes sense - or was that the point?
Agreed. I'm completely confused about that site.
giphy.gif


(Ps: I also assumed it was a Google translation or similar...)
 
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Nielk

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I thought it looked like a google translation until I went to the link. The linked page is in English, but doesn't say the same as the extract Nielk copied. @Nielk where did that come from?

By the way your irony is not lost on me ;)

When I click on the link, that's the page I get. Do you see where it says English version on the top right? Hover the arrow over it and it will give you a few options. One of them says KDM and Think Tank. Press on that one and it should take you to the page that I quoted.
 

Gijs

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The Meirleir was wrong many times before. First H2s and then the XMRV hype now he is making ME into a new Lyme hype, i don't believe him at all when he say that ME is chronic Lyme. Sorry i am very sceptical. I wonder when his data will be published to prove his statement.
 

Folk

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The Meirleir was wrong many times before. First H2s and then the XMRV hype now he is making ME into a new Lyme hype, i don't believe him at all when he say that ME is chronic Lyme. Sorry i am very sceptical. I wonder when his data will be published to prove his statement.

That also cross my mind... What happened to the H2s test?

And I've read he used to "treat" XMRV, is that correct?
 

SOC

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The Meirleir was wrong many times before. First H2s and then the XMRV hype now he is making ME into a new Lyme hype, i don't believe him at all when he say that ME is chronic Lyme. Sorry i am very sceptical. I wonder when his data will be published to prove his statement.
Does he say that ME is chronic Lyme, or that nearly 100% of his patients have Lyme exposure or chronic Lyme? Those two statements are not identical.

Also, does he say nearly 100% of his patients have chronic Lyme or does he say that percentage has tick-borne illness?

I don't have a horse in this race, I'm just trying to sort out KDM's exact position.
 

Nielk

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"1- patients with ME / CFS and chronic Lyme are the same, since they show the same abnormalities." from post # 209
 

Sushi

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"1- patients with ME / CFS and chronic Lyme are the same, since they show the same abnormalities." from post # 209
Yet, when you talk to him in person, as I did this week, he indicates that the disease process is much more complicated--with the disease process taking different courses with different manifestations in each patient.

Sushi
 

SOC

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"1- patients with ME / CFS and chronic Lyme are the same, since they show the same abnormalities." from post # 209
Is that a direct quote from KDM, or someone's interpretation of what he said? That's not clear to me from post #209.
Yet, when you talk to him in person, as I did this week, he indicates that the disease process is much more complicated--with the disease process taking different courses with different manifestations in each patient.
This sort of thing is exactly what makes me wonder if people are interpreting what he says from their own perspective or extrapolating beyond what he says. It's pretty clear from the exact quotes I've seen that KDM thinks Lyme and other tick-borne illnesses are major players in his ME/CFS patients. Whether he actually thinks ME/CFS = chronic Lyme is still unclear to me.
 
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