Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

[A.B.]

The presentaiton you quoted is 3/4 years old and his opinion has evolved although he does still believe Lyme plays a role in a lot of patients either as the initiaing organism, or in some cases as a cause of ongoing symptoms. The goal of KDM’s treatment is to attempt to break the cycle which is happening in the intestines by correcting the dysbiosis using pulsed antibiotics/probiotics. In continually removing the source of the inflammation (the excess LPS caused by the SIBO)

I accept your word that he is now transitioning to a new treatment. There is a clear pattern of him coming up with a new treatment every few years and apparently he doesn't learn that his standards of evidence are too low. As far as I know one of his previous theories was that the problem was mycoplasma infection. We don't hear much about that anymore. That he is seeing a lot of gut issues and SIBO doesn't surprise me at all, because that's what you see in patients that were on antibiotics. I also had these after his antibiotic treatment and my gut still isn't back to how it was before.

 

[Twazzle]

I wouldn't say he learns nothing from it or that he is transitioning to an entirely new treatment.

You are making some very bold and potentially downright libellious false public statements about him - when you have never met him and are going off internet hearsay to come up with wild, innacurate conclusions.

I read this site for almost a year before I actually joined as a member- don't forget that what you post is read by a vastly greater number of the people that comment on the thread. Whilst you may argue it is your duty to inform the public about KDM's treatment methods - you do not do so from a poistion of any authority having never had any direct experience of him. Your posts have also exposed your little understanding of his logic (which happens to be based on cutting edge research), so you are in no position to criticise it. This is dangerous and unethical and could result in many people not choosing him as a doctor when there is an excellent chance they may be helped by him.

We are talking about a disease which has fooled medical science for 30+ years. Research has moved on significantly over the last 5 years so it wouldn't make sense that he would stick to the exactly same treatments that he did 5+ years ago. It is to his credit that his treatments evolve with the latest research. As it has been pointed out before, the general trend amongst wider resarch is that it is increasingly focusing on a dysregulated microbiome.

Much of the knowledge we have about the illness comes from KDM's findings and whatever you think of him we should all be grateful for his contribution. At the very least we should not publically criticise his methods when we evidently have little understanding of them.

 

[A.B.]

@Twazzle I saw him 2 years ago and he diagnosed me with late stage lyme and chronic yersinia infection. I tried his treatment, trusting that his experience was valuable despite absence of evidence, and it didn't work but made me much worse. The attitude that some people should not be criticised is dangerous and unscientific. One only needs to look at the PACE authors to see the fruits of this attitude. They are out of touch even after 25 years of experience and continue to promote nonsensical treatments.

 

[duncan]

tried his treatment, trusting that his experience was valuable despite absence of evidence

You trusted a doctor's diagnosis of Lyme in the absence of any evidence? Eh, I bet most have us have, though.

It's hard to be a patient. You have to learn a lot. sorry, do not mean to come off as condescending.

The thing is, Lyme COULD be at play. Then again, maybe not. We cannot know because testing sucks. So, all we can do is try to glean what we can by ourselves - then agree or disagree with the clinician. This is true for borrelia and enteroviruses and you name it.

We are in an almost unique position. The thing is, so too are ME/CFS clinicians. We are all of us dealing with only partial glimpses of an answer that may be in multiple parts.

 

[Twazzle]

@Twazzle I saw him 2 years ago and he diagnosed me with late stage lyme and chronic yersinia infection. I tried his treatment, trusting that his experience was valuable despite absence of evidence, and it didn't work but made me much worse. The attitude that some people should not be criticised is dangerous and unscientific.

Well that's unfortunate and I am very sorry that happened to you. It is not my view that people should not be criticised, if you have met KDM and were disappointed with your treatment then I can totally understand. Most of the criticism I see on here however is totally unfounded and from people who have had no dealings with him - this is in my opinion very unfair and potentially harmful, similar to writing a review of a restuarant that you haven't been to.

Anyway, I hope the discussion has shed some light on what his latest thinking is re bacterial infections. Hopefully his findings will have benefits for all of us in the long run whether we are current patients of his or not.

 

[A.B.]

Most of the criticism I see on here however is totally unfounded and from people who have had no dealings with him - this is in my opinion very unfair and potentially harmful, similar to writing a review of a restuarant that you haven't been to.

It is perfectly fine to criticize something one hasn't personally tried.

 

[Twazzle]

It is perfectly fine to criticize something one hasn't personally tried.

I would rather not get into sematics. Bottom line is if you have little understanding of something then it is not fair to make disparaging public comments and bold statements that could have negative consequences for someone's reputation. It is why we have libel/slander laws.

 

[Marky90]

I would rather not get into sematics. Bottom line is if you have little understanding of something then it is not fair to make disparaging public comments and bold statements that could have negative consequences for someone's reputation. It is why we have libel/slander laws.

Pretty condescending.

Its freedom of speech, A.B is asking some valid questions. The law is not the same for the most part in europe as in uk or the united states. There might be some cultural differences here

 

[A.B.]

Bottom line is if you have little understanding of something then it is not fair to make disparaging public comments and bold statements that could have negative consequences for someone's reputation. It is why we have libel/slander laws.

The PACE authors too use this argument, for similar reasons. There's just no excuse for what they are doing, so all that is left is either claiming to be victims of unfair criticism or attempting to silence critics. Various comments meant to intimidate and smear me have been made in public or privately since I started to speak up about this, all sad testaments to the lack of good arguments in favor of this treatment approach. I think this thread was useful for me. Hopefully it will be useful for other people as well.

 

[snowathlete]

I wouldn't say he learns nothing from it or that he is transitioning to an entirely new treatment.

You are making some very bold and potentially downright libellious false public statements about him - when you have never met him and are going off internet hearsay to come up with wild, innacurate conclusions.

I read this site for almost a year before I actually joined as a member- don't forget that what you post is read by a vastly greater number of the people that comment on the thread. Whilst you may argue it is your duty to inform the public about KDM's treatment methods - you do not do so from a poistion of any authority having never had any direct experience of him. Your posts have also exposed your little understanding of his logic (which happens to be based on cutting edge research), so you are in no position to criticise it. This is dangerous and unethical and could result in many people not choosing him as a doctor when there is an excellent chance they may be helped by him.

We are talking about a disease which has fooled medical science for 30+ years. Research has moved on significantly over the last 5 years so it wouldn't make sense that he would stick to the exactly same treatments that he did 5+ years ago. It is to his credit that his treatments evolve with the latest research. As it has been pointed out before, the general trend amongst wider resarch is that it is increasingly focusing on a dysregulated microbiome.

Much of the knowledge we have about the illness comes from KDM's findings and whatever you think of him we should all be grateful for his contribution. At the very least we should not publically criticise his methods when we evidently have little understanding of them.

I do not agree that you have to have seen a doctor, be treated by them, before you are allowed to criticise. Why? As it goes, I have been a patient of KDM myself, so from what you say I am qualified to speak. KDM diagnosed me with a bacterial infection when most doctors would not consider there to have been enough evidence of it. He then prescribed me abx on the back of that and it made me worse. I now have ulcerative colitis as a direct result of those abx.

Where is the evidence that those who see him have an "excellent chance" they may be helped by him? I think if people make claims like this they rightly are going to be challenged to present the proof.

There is nothing wrong with you defending KDM. There is also nothing wrong with the OP questioning what KDM does.

 

[A.B.]

The thing is, Lyme COULD be at play.

Yes, but so could a lot of other things. The mere possibility isn't good enough. I am also thinking about how that money could otherwise be spent. I estimate that de Meirleir's clinic's revenue and the associated testing at RED labs is several millions euro per annuum at least, possibly exceeding €5 million. This money could be spent on research or things that actually improve our quality of life like electric bikes or wheelchairs. Something to consider the next time we complain about a lack of research funding

 

[unicorn7]

@Twazzle I saw him 2 years ago and he diagnosed me with late stage lyme and chronic yersinia infection. I tried his treatment, trusting that his experience was valuable despite absence of evidence, and it didn't work but made me much worse. The attitude that some people should not be criticised is dangerous and unscientific. One only needs to look at the PACE authors to see the fruits of this attitude. They are out of touch even after 25 years of experience and continue to promote nonsensical treatments.

I absolutely agree with you. Every method should be criticized. I do think we should criticize on the method of treatment itself and maybe less on the person.

I do think that long term antibiotics absolutely have a downside to them. When I went there, I hadn't made my mind up yet if I were going to go for long term antibiotics, when he would prescribe that treatment for me. Luckily, he didn't see me being positive for lyme and bartonella as an active infection, so my treatment is only for the gut and I didn't have to make that decision. I can only comment on the treatment he is prescribing me right now and the explanation he gives me, which I find satisfying. Plus all my gut problems are now cleared and I had an awesome few months last year

I feel the same way about all the rituximab being given to patients right now. For me, it feels like a greater risk to get rituximab without solid proof, but I don't know the exact risks involved. So that could be just a feeling that I have about meddling in your immune system, when we don't know exactly what is going on. I wouldn't try that out just yet, but I might be wrong and I think a lot of people would disagree with me.

 

[Twazzle]

I do not agree that you have to have seen a doctor, be treated by them, before you are allowed to criticise. Why? As it goes, I have been a patient of KDM myself, so from what you say I am qualified to speak. KDM diagnosed me with a bacterial infection when most doctors would not consider there to have been enough evidence of it. He then prescribed me abx on the back of that and it made me worse. I now have ulcerative colitis as a direct result of those abx.

Where is the evidence that those who see him have an "excellent chance" they may be helped by him? I think if people make claims like this they rightly are going to be challenged to present the proof.

There is nothing wrong with you defending KDM. There is also nothing wrong with the OP questioning what KDM does.

In 2014 there was an official survey conducted in Norway that charted the responses of 1100 ME/CFS patients. This article summarises the findings:

https://www.healthrising.org/blog/2014/07/04/norwegian-survey-chronic-fatigue-syndrome/

"The survey reported that 75% of Dr. De Meirleir’s patients surveyed have gotten better while only 1 out of 10 have gotten worse"

 

[Sidereal]

you do not do so from a poistion of any authority having never had any direct experience of him

By this logic, we cannot know anything without having experienced it first hand. I should hope I don't need to get cancer to develop an understanding of cancer. I don't need to go to Detroit to know that it stinks. The fact that there is no published evidence for his claims of ME/CFS disease mechanism or treatment protocols is good enough for me. The onus is on these doctors to provide peer-reviewed evidence for their claims, not for me to subject myself to wildly speculative therapies.

 

[Marc_NL]

I estimate that de Meirleir's clinic has a revenue of several millions euro per annuum at least, possibly exceeding €5 million. This money could be spent on research or things that actually improve our quality of life like electric bikes or wheelchairs.

Not sure if I understand you correctly.
Do you suggest to close the clinic so that I will probably lose the improvements I have made over the last year and that I will just use the money I would normally spend on KDM to buy you an electric bike?

 

[dadouv47]

Yes, but so could a lot of other things. The mere possibility isn't good enough. I am also thinking about how that money could otherwise be spent. I estimate that de Meirleir's clinic's revenue and the associated testing at RED labs is several millions euro per annuum at least, possibly exceeding €5 million. This money could be spent on research or things that actually improve our quality of life like electric bikes or wheelchairs. Something to consider the next time we complain about a lack of research funding

Really curious to know how you made this estimation

 

[A.B.]

I feel the same way about all the rituximab being given to patients right now. For me, it feels like a greater risk to get rituximab without solid proof, but I don't know the exact risks involved.

There is a crucial difference between the way de Meirleir and Fluge & Mella are operating. The Rituximab work is being published and will add to our understanding whether the result is positive or negative. De Meirleir doesn't publish his results so we have no idea how good or bad his treatment approach is. He is not behaving responsibly. If he has repeatedly seen patients improve with antibiotics he should write up a hypothesis and design a small study, publish the results and build on it.

 

[duncan]

Yes, but so could a lot of other things.

This is our dilemma. But we are also prey to our own predatory biases that work their way into our belief systems after years of research and trial and errors and obscure backstories and trusts and broken trusts. My forced expertise is in TBD's, but I also think the corrupted immune system is the main culprit in ME/CFS. Still because of what I know of the silenced labyrithian Lyme story, I recognize how anyone might think it is Lyme, especially clinicans who know the same stuff I do.

I am also thinking about how that money could otherwise be spent.

Nods. That's a slippery slope, though. We'd never get anywhere if we always second guess an embraced direction. And who is to say at this juncture that the choice we'd make is the right choice?

 

[dadouv47]

Not sure if I understand you correctly.
Do you suggest to close the clinic so that I will probably lose the improvements I have made over the last year and that I will just use the money I would normally spend on KDM to buy you an electric bike?

Don't forget to give me one please

 

[dadouv47]

While I understand your frustration @A.B. I don't see the point of spending so much energy in criticizing KDM.
I mean, I respect your opinion (even if I think you said some false/inaccurate things) and I mostly respect the fact that indeed he treated you very badly and made a big mistake in your case, which must be painful.

But you are not going to help a lot of people by spending your time criticizing him, mostly because he's not accepting new patients from what I have heard (if he's maybe only a few). Even if you dislike KDM and his methods/theories, you will help way more people by advocating against the GET practitioners, where thousands of patients are going every day.

Sorry but I can't see the point of keeping saying the same things over and over.