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

[Twazzle]

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.

I agree. As the statistics above show, 75% of his patients do improve whilst only 10% get worse. This is obvioulsy very unfortunate for the few that get worse and while everyone has a right to criticise anyone - it is not constructive criticism in my opinion to insinuate that the guy does not know what he is doing, as the statistics show he does. .

 

[JES]

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.

He does publish some results, according to PubMed he has 93 papers (source). Even we assume that his modus operandi hasn't changed and that he still prescribes antibiotics to a majority of patients, it is perfectly fine to do so if the lab results point towards an active infection. As I said earlier, if you have a lab result of a bacterial infection, you will get antibiotics from most private doctors, in my experience. I even got prescribed a long course of Tetracycline just for teenage acne, which I later regret taking. But if antibiotics weren't generally considered safe, they wouldn't get prescribed for things like acne. Side effects happen, but it concerns a minority.

 

[unicorn7]

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.

I don't mean the Fluge & Mella research. The rituximab is given there in a clinical study setup. The results of this research are not out yet.

I read a lot of stories on this forum of docters and patients already experimenting with this drug anyway. I think the risk of using rituximab without a decent protocol and expert knowlegde is a lot higher, than using antibiotics.

I have really high hopes for the drug, but it's extremely expensive, not without risks, not everyone is a responder and most people relapse after a period of time.
Just to make a little comparison..

 

[duncan]

I thought this article might be relevant to the conversation even though it does not mention KDM. It does, however, discuss a bit the tie of Lyme to ME/CFS - both in terms, potentially for some, of an underlying pathogen, and of a pathogen-induced autoimmune disorder:

http://www.huffingtonpost.com/entry...85ce4b02c642e4a18db?ncid=engmodushpmg00000003

 

[Daffodil]

Okay. I know that some years ago there were questions as to the accuracies at his Belgium Redlabs site. Hopefully, it has been straightened out.

I worry about these things because we are so vulnerable being that we are so sick and have few options for care. We are an open target for some who are not necessarily looking for our benefit but for monetary ones.

I'm not saying that this is the case with KDM. Just saying we need to be careful. When a doctor also owns the lab he uses, it may be a problem.

ha believe me I know. I am the one who complains every time there is something I think might be 'iffy' with sample handling in Reno. I have also spoken to the director of Redlabs in Brussels about possible problems with mailing samples and fixatives used..I usually get very upset about things and go on and on, telling them I am poor and dying and have no way of knowing if the tests are accurate or for nothing lol ..and my concerns are always properly addressed. Only one of my concerns ever turned out to be legitimate.

But I guess there is nothing we can do about determining test accuracy. I have always felt Redlabs was better than other labs. I know the stool analysis testing they were doing was over 60% more accurate than the one that was being done at the same time in USA at metagenomics (I think that was the name)

 

[msf]

After being told that what Montoya does and says (in his latest interview he says that some of his patients have basically recovered, but no one blinked an eye, whilst when KDM says that people criticise him), is completely different from what KDM does, I tagged @A.B. in the thread below, but he has declined to respond so far.

http://forums.phoenixrising.me/index.php?threads/dr-kaufman-patients-anyone-bartonella-positive-in-galaxy-lab-being-treated-here.52940/#post-908732

Now, perhaps A.B. and others believe that diagnosing patients with viral infections without what the mainstream medical community would term sufficient evidence, as several ME doctors do, is somehow better than doing so with bacterial infections (there is definitely a pro-virus bias amongst ME researchers, just count how many times people like Hornig say virus rather than pathogen), but Kauffman seems to be testing for and diagnosing a bacterial infection (a TBI that KDM also tests for, no less) in a sizeable proportion of his patients. I would love it if someone could explain to me how what Kauffman is doing with regards to Bartonella is different from what KDM is doing.

 

[Learner1]

Kauffman seems to be testing for and diagnosing a bacterial infection (a TBI that KDM also tests for, no less) in a sizeable proportion of his patients. I would love it if someone could tell me how what Kauffman is doing with regards to Bartonella is different from what KDM is doing.

I'm a patient of Dr. Kaufman's. After taking a very thorough health history going back to birth and looking at the labs I brought him, Dr. Kaufman had about 2 dozen tubes of blood drawn, which went to 3 different labs, and found problems over a dozen doctors had missed, but that fit well with what my primary doctor had already diagnosed. His choices of testing were completely based on my unique history, and he did not test me for Bartonella. In comparing notes with other patients, he customized his approach for each of us.

 

[msf]

I was not implying that Kauffman is doing anything wrong, and I could say exactly the same about my experience of seeing KDM.

 

[justy]

I'm a patient of Dr. Kaufman's. After taking a very thorough health history going back to birth and looking at the labs I brought him, Dr. Kaufman had about 2 dozen tubes of blood drawn, which went to 3 different labs, and found problems over a dozen doctors had missed, but that fit well with what my primary doctor had already diagnosed. His choices of testing were completely based on my unique history, and he did not test me for Bartonella. In comparing notes with other patients, he customized his approach for each of us.

This is exactly what KDM did for me. Testing was based on my own history and very extensive with multiple vials drawn and a customised treatment plan just for me.

 

[A.B.]

If doctors think they can treat CFS by antivirals and antibiotics they should publish their methods and results. It is unethical to not share this information.

 

[msf]

I´m glad to see you are being consistent now.

 

[Valentijn]

If doctors think they can treat CFS by antivirals and antibiotics they should publish their methods and results. It is unethical to not share this information.

Then perhaps your crusade against treating infections in ME patients should be more broadly targeted? Singling out one doctor doesn't make sense.

 

[msf]

I understand it in the context of A.B. (n=1) having had a bad experience as a patient of KDM, but others should be aware of that context.

 

[snowathlete]

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"

Interesting. Looks like 1100 patients were surveyed which is a good size, but the article doesn't say how many of these patients were treated by KDM. The link to the survey doesn't work and I don't speak Norwegian anyway. Would be interested to know if you're able to find the data though. Is 75% of patients improving an excellent chance? I guess that might be fair if the numbers are high enough. Is it 600 patients though, or 60?

1 out of 10 being made worse strikes me as rather high though, even if the numbers are low, because getting better is one thing, staying the same is another, but being made worse is a serious thing. I still have concerns that patients may not be being fully informed of the risks associated with treatments.

 

[A.B.]

1 out of 10 being made worse strikes me as rather high though

I wouldn't count on this being accurate. I can't give private information but my impression was that side effects are common and often fairly serious but typically interpreted as due to the illness rather than the treatment. Several people reported one of nerve damage, another disease appearing, strong reactions to antibiotics that make further treatment impossible. All these people defended de Meirleir.

 

[dadouv47]

75% of patients improving from a disease that doesn't have cure is GREAT. But I don't think those numbers were precise enough. There are cases of mild improvements, great improvements and remission. They should separate them. Also I don't believe 10% of patients get long term worsening. I don't know how much time those patients were followed but it looks a bit too much (and on the opposite side, you have people with great improvements that relapse years after they had their treatments).

 

[snowathlete]

If doctors think they can treat CFS by antivirals and antibiotics they should publish their methods and results. It is unethical to not share this information.

Although KDM does publish some research occasionally - I've even blogged positively about it myself on this site - I also find it very peculiar that he has not published any research (certainly not recently that I have seen) about his own clinic. If 75% of patients (and it is a lot of patients which KDM sees) are getting better from his treatments, as a survey of unknown size to me currently suggests, then you would expect KDM to publish about it.

Not just KDM, but other doctors who do the same thing. I know more about KDM because I've seen him and we are both in Europe. I haven't followed some US clinicians as much. I know Montoya and Lerner previously have published papers on their clinical treatments though, so perhaps there is less of a question over them - I'm not sure.

 

[A.B.]

@snowathlete if this approach really worked they would publish. That's my thinking. There has to be a serious problem with the infectious hypothesis if after 30 years of attention and trying nobody has publishable results.

 

[snowathlete]

I wouldn't count on this being accurate. I can't give private information but my impression was that side effects are common and often fairly serious but typically interpreted as due to the illness rather than the treatment. Several people reported one of nerve damage, another disease appearing, strong reactions to antibiotics that make further treatment impossible. All these people defended de Meirleir.

I think survey data can be useful. But I'd like to understand how many of the 1100 patients were treated by KDM, I don't know what questions they were asked and what answers they could give. I agree there are potentially problems with the way these things might be considered, disease symptoms or a herx rather than adverse effect of the treatment.

I support access to doctors, and treatments, choice for patients. I also believe it is an ethical requirement to provide patients with the information they need to make an informed decision on their treatment which includes disclosure of risks.

 

[Valentijn]

... I also find it very peculiar that he has not published any research (certainly not recently that I have seen) about his own clinic.

Do you find it peculiar when other clinicians don't publish such research?