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

[dadouv47]

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.

It's not up to him to publish about his patients.
It's impossible to publish any number. He can't determine several parameters : patients are no longer going to him for several reasons (feeling better, feeling worse, status quo, money issues).
Also it's a clear case of conflict of interest, and don't think publishing approximative estimations would help.
Independent studies should be following his patients, like they have done in Norway.

 

[snowathlete]

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).

Good points.

Without a control group, surveys like this don't provide a comparison of patients who had no treatment, or some other care, who might have had an improvement or harm also. One of the limitation of survey data like this.

As you point out, long term follow up from most ME CFS treatments seem to result in evaporation of gains too, and that might be an issue here as well.

 

[snowathlete]

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

I certainly do, as per my second paragraph.

 

[Twazzle]

@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.

Just to hammer this point home - HE DOESN'T believe ME is caused by a pathogen. Yet you persist with this narrative to support your argument.

Yes ME doctors treat infections and this often helps patients experience a better quality of life. It doesn't mean they are saying it is caused by a pathogen.

 

[Valentijn]

I certainly do, as per my second paragraph.

All clinicians, or just ME ones? All ME clinicians or just ones using certain treatments? Which treatments?

 

[snowathlete]

It's not up to him to publish about his patients.
It's impossible to publish any number. He can't determine several parameters : patients are no longer going to him for several reasons (feeling better, feeling worse, status quo, money issues).
Also it's a clear case of conflict of interest, and don't think publishing approximative estimations would help.
Independent studies should be following his patients, like they have done in Norway.

I agree there are limitations such as those you put forth but all research has limitations and it's possible to point those out.

The way I see it, if you have a terrible disease like ME with no effective approved treatments, if you run a clinic with tens of thousands of patients coming through your door and you think you improve a significant portion of them, it would be appropriate to publish something formal on that. Maybe that would lead to you being able to conduct a formal study in the future, or to another researcher being able to do so.

 

[snowathlete]

All clinicians, or just ME ones? All ME clinicians or just ones using certain treatments? Which treatments?

Good questions, my initial thoughts are that where any non proven treatments are being prescribed to patients (in any disease) once you have treated a significant number of patients, you should publish some data on that, especially if you are going to continue to offer such treatments going forward.

 

[dadouv47]

I agree there are limitations such as those you put forth but all research has limitations and it's possible to point those out.

The way I see it, if you have a terrible disease like ME with no effective approved treatments, if you run a clinic with tens of thousands of patients coming through your door and you think you improve a significant portion of them, it would be appropriate to publish something formal on that. Maybe that would lead to you being able to conduct a formal study in the future, or to another researcher being able to do so.

I understand that you consider important to have datas to show the effectiveness of his treatments. It would be great. I try sometimes to figure out the percentages, but it's too difficult to tell.

He gives you his diagnosis and prescribes you tons of supplements and medication, and his treatment last years for most patients. In the meantime, many patients are also trying different things while being treated by KDM. So many patients diagnosed for Lyme try herbal protocols (buhner, cowden or whatever). If they get better (or worse), is it because of KDM treatment or the herbal protocol? It's impossible to know for sure. Speaking to a lot of patients, I know how the vast majority of his patients are trying different things (from diet changes to supplements or other kind of treatments) while taking what he prescribes to them.

It's not like those patients are only going to his clinic and taking only the magical pill he's giving to them. It's very very difficult to make any clear statement and publish accurate precise results.

 

[Twazzle]

His patients are treated individually also. There isn't a 'set treatment' you get as per a clinical trial. I wouldn't be too happy about paying money for bespoke testing just to be given a standard treatment so he could publish my data.

 

[Valentijn]

Good questions, my initial thoughts are that where any non proven treatments are being prescribed to patients (in any disease) once you have treated a significant number of patients, you should publish some data on that, especially if you are going to continue to offer such treatments going forward.

But the antibiotics are not prescribed on the basis of an ME diagnosis. They're prescribed based on a diagnosis of Lyme or another infection, primarily determined by lab tests. Do all clinicians treating infections need to publish data on that?

 

[A.B.]

But the antibiotics are not prescribed on the basis of an ME diagnosis. They're prescribed based on a diagnosis of Lyme or another infection. Do all clinicians treating infections need to publish data on that?

Obviously, if it's worth diagnosing and treating, then it's worth publishing about.

 

[dadouv47]

Obviously, if it's worth diagnosing and treating, then it's worth publishing about.

You already have scientific evidences about X treatment for Lyme infection.

 

[A.B.]

You already have scientific evidences about X treatment for Lyme infection.

We're going in circles. If confirmed, finding very frequent infections in ME/CFS that can be treated and result in symptom improvement would be nothing short of revolutionary. So it's worth publishing.

 

[dadouv47]

If Lady Gaga diagnosed with fibroymalgia goes to a specialist that finds Lyme infection, would it be unethical and dangerous to prescribe her a treatment that has scientific evidences? Should the Doctor publish about a treatment that has already scientific evidences about his effectiveness?

 

[snowathlete]

But the antibiotics are not prescribed on the basis of an ME diagnosis. They're prescribed based on a diagnosis of Lyme or another infection, primarily determined by lab tests. Do all clinicians treating infections need to publish data on that?

It becomes muddy, some patients with ME might actually have Lyme, or might have both concurrently, but where there is no approved test showing that these patients have Lyme, it's arguably more likely that they have just got ME and it seems a lot of patients find themselves in that situation.

I find @dadouv47's arguments for the difficulties of reporting such data the most convincing argument against. I think with such large numbers of patients being treated that publishing some comparable data would still be possible, but in the absence of such data we find ourselves where we are which is that patients helped by KDM say so and those harmed by him say so, in which case potential patients have nothing objective to base decisions on.

At the minimum, such patients should be informed what potential harm might come there way and that's my primary argument.

 

[Twazzle]

We're going in circles. If confirmed, finding very frequent infections in ME/CFS that can be treated and result in symptom improvement would be nothing short of revolutionary. So it's worth publishing.

Treating infections and having the patient experience an improvement in symptoms is pretty much one of the main goals of medicine, not sure what part of that would be revolutionary. Why would it be different for ME patients?

 

[duncan]

It becomes muddy, some patients with ME might actually have Lyme, or might have both concurrently, but where there is no approved test showing that these patients have Lyme, it's arguably more likely that they have just got ME

I'm not sure if this is correct. It may be. I think there are some built in assumptions in many pwME, though, one of which being that conventional Lyme tests - or even otherwise - are good enough screens to discriminate between Bb and ME. I'm not confident in that particular assumption.

You are right: It gets muddy very quickly.

 

[dadouv47]

It becomes muddy, some patients with ME might actually have Lyme, or might have both concurrently, but where there is no approved test showing that these patients have Lyme, it's arguably more likely that they have just got ME and it seems a lot of patients find themselves in that situation.

I find @dadouv47's arguments for the difficulties of reporting such data the most convincing argument against. I think with such large numbers of patients being treated that publishing some comparable data would still be possible, but in the absence of such data we find ourselves where we are which is that patients helped by KDM say so and those harmed by him say so, in which case potential patients have nothing objective to base decisions on.

At the minimum, such patients should be informed what potential harm might come there way and that's my primary argument.

I agree that you should inform people about the fact that he has great, good and some very bad results with his patients. You can also claim that there's no data to prove the exact number of successful rate with his treatments.

What I really don't agree with most of KDM's criticism is to say that there are no scientific evidences from what he's giving to his patients. If he finds leaky gut in his patients, he will give antibiotics (or herbal protocols) that are scientifically proven to help for SIBO/leaky gut. The same applies for Lyme, EBV, yersinia or whatever infection he will find.

If those treatments can be effective treatments for ME, that's another debate.

 

[A.B.]

If he finds leaky gut in his patients, he will give antibiotics (or herbal protocols) that are scientifically proven to help for SIBO/leaky gut.

You mean samento, banderol, cumanda? That's for treating chronic lyme disease. There's probably no credible evidence it does anything for any condition.

 

[dadouv47]

You mean samento, banderol, cumanda? That's for treating chronic lyme disease. There's probably no credible evidence it does anything for any condition.

No : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/