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

[Jonathan Edwards]

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.

This is not correct. A physician making use of a novel or unproven treatment has a duty to publish their findings. I have been in this situation and published on every patient treated up to the point where the treatment was licensed. There is no reason not to do so if one keeps good records. There is no conflict of interest. The conflict of interest occurs when money is made from treatments that have not been properly documented.

 

[Jonathan Edwards]

KDM is not inventing a new treatment, or putting an existing treatment to a new use. He is using treatments which are already known, for patients in whom he finds problems for which those treatments are indicated. This is what doctors do. He is not a researcher - he is a clinician.

I do not think this is a realistic assessment, Valentijn. If this is standard practice then every other physician would do the same and people would not travel thousands of miles.

 

[Valentijn]

I do not think this is a realistic assessment, Valentijn. If this is standard practice then every other physician would do the same and people would not travel thousands of miles.

The standard practice is to avoid testing and treating ME patients at all. That isn't hyperbole. But perhaps you could clarify which treatments you think are non-standard? Keeping in mind that he is not using antibiotics, etc, to treat ME, but rather to treat infections and other issues when testing indicates they are present.

 

[ivorin]

He does exactly what you say Valentijn BUT without weighing in the fact that it is up to him to follow-up on the therapies he is responsible for devising, not the gp's that he believes will be administering them (or rather, as he well knows, the patients themselves). This is where, imho, he deviates from sustainable, beneficial practice.

 

[Jonathan Edwards]

The standard practice is to avoid testing and treating ME patients at all. That isn't hyperbole. But perhaps you could clarify which treatments you think are non-standard? Keeping in mind that he is not using antibiotics, etc, to treat ME, but rather to treat infections and other issues when testing indicates they are present.

That is unrealistic, Valentijn. It all turns on the evidence for the infection being responsible for the patient's symptoms. Standard practice is not to avoid testing. The infectious disease and immunology physicians I know test for infections where they think appropriate and treat where they believe it is reasonable to attribute symptoms to an infection. You have said yourself that ME symptoms are probably not due to active infections. Having been on PR for about four years I have not got the impression that anyone here has symptoms that a physician would normally attribute to an active infection. ME symptoms sound like having a quite different origin, whether or not triggered by infection in the past.

 

[Valentijn]

It all turns on the evidence for the infection being responsible for the patient's symptoms.

No, not at all. But there are many types of immune dysfunction where there is increased susceptibility to types of infections, and difficulty in clearing or repressing them without antibiotics, antivirals, or antifungals. What is it about ME that makes this unlikely to be happening to us, in your opinion?

The infectious disease and immunology physicians I know test for infections where they think appropriate and treat where they believe it is reasonable to attribute symptoms to an infection.

Many make an exception for ME patients, because they believe it is psychosomatic.

But regarding the subject at hand: KDM treats based on test results. His non-standard practice, as you might call it, would be that he tests widely in the first place.

 

[ivorin]

That is unrealistic, Valentijn. It all turns on the evidence for the infection being responsible for the patient's symptoms. Standard practice is not to avoid testing. The infectious disease and immunology physicians I know test for infections where they think appropriate and treat where they believe it is reasonable to attribute symptoms to an infection. You have said yourself that ME symptoms are probably not due to active infections. Having been on PR for about four years I have not got the impression that anyone here has symptoms that a physician would normally attribute to an active infection. ME symptoms sound like having a quite different origin, whether or not triggered by infection in the past.

I believe he is of the opinion that, what Naviaux is calling the Cell Danger Response, can be reset to a certain degree if enough outstanding issues and imbalances are corrected which would lead to reversal of the "state of ME".

Keep in mind, this is according to what he explained to me and my particular case, not a general modus operandi of his for everyone.

 

[Jonathan Edwards]

No, not at all. But there are many types of immune dysfunction where there is increased susceptibility to types of infections, and difficulty in clearing or repressing them without antibiotics, antivirals, or antifungals. What is it about ME that makes this unlikely to be happening to us, in your opinion?

We have no convincing evidence for immunosuppression in ME, as you know.

Many make an exception for ME patients, because they believe it is psychosomatic.

But regarding the subject at hand: KDM treats based on test results. His non-standard practice, as you might call it, would be that he tests widely in the first place.

We are all familiar with physicians who do not take ME seriously but all the physicians (not psychiatrists) who manage ME in the UK I have talked to recognise a biological cause for ME and if they are infectious disease physicians or immunologists they do tests for infection. There are lots of doctors who inadequately investigate all sorts of things, like my prostate cancer.

The non-standard practice is to treat in a context where there is no clear evidence for a link between a test result and symptoms - as you yourself have indicated.

 

[JadeD]

With respect to publishing studies, yes I agree this is very important and should be done. However please tell me why the majority of ME physicians who currently treat patients in their clinics and have done for years, have not yet published research on their use of medications (whether licensed, unlicensed or off-label) for the treatment or symptomatic management of ME? This may be another good topic thread to discuss. I wonder if it's due to lack of funding, lack of time or due to the heterogeneity of treating ME patients.

Doing a quick literature search I have seen that the likes of Nancy Klimas, Jose Montoya, Daniel Peterson, Lucinda Bateman, Derek Enlander, Susan Levine etc have not published papers on use of specific medication in the treatment of their ME patients. Their published papers all seem to be about the biomedical research they have conducted with the goal of developing a biomarker or furthering the understanding of the pathophysiology of the disease. Yet they all run clinics and treat patients currently. Because there's so few of these doctors, people do have to travel thousands of miles to see them if they are able to. Their individual approach to treatment is not really standardised. Therefore KDM is of no exception.

All of these doctors do use medication for the treatment of ME or it's complications and this is always dependent on what they find in that particular patient e.g. orthostatic intolerance, re-activated viral infections, SIBO etc. However they do all share their differing treatment approaches at the international ME conferences. KDM has presented his clinical findings and treatment approach on numerous occasions to his colleagues.


@Vassie - If KDM diagnoses SIBO in some of his patients. He uses rifaximin or oral vancomycin, not IV. Rifaximin is commonly used worldwide and by NHS doctors for the treatment of SIBO despite it not having a license for this indication. If KDM detects abnormal levels of clostridia in the stool then he uses oral vancomycin again off label. However these antibiotics are non-absorbable so do not have systemic effects. But yes they will alter the gut microbiome which can have numerous physiological effects on the patient, but these are his intentions. He closely monitors response to treatment with repeat stool tests. Of course he is well aware of antibiotic resistance but tries to minimise this occurring by using very short pulsed antibiotic courses in combination with much longer courses of prebiotics.

In terms of gammanorm - he does screen IgG levels prior to treatment to determine if there is coexisting CVID or not. A few studies, even one from Fluge and Mella have detected lower IgG3 levels in ME patients (this may or may not have any clinical significance). However he is using gammanorm for it's immunomodulatory action. No one yet knows how immunoglobulins work in autoimmune diseases however they are used for many other disease states. There are a few published studies and anecdotal use in ME. From what I have read some people benefit significantly while others do not. This may be down to subtype differences in the ME population.

KDMs main focus is to reduce gut inflammation, use immunomodulatory treatments and modify the gut microbiome (if SIBO or high levels of pathogenic bacteria are present). This is all in the hope of providing symptomatic relief to his patients which he does routinely see otherwise he wouldn't be treating patients at all. He has devoted his whole career to supporting ME patients, does this not warrant a little bit of respect?

 

[Vassie]

How so? All of the side effects seem to be related to IV administration, since it doesn't get absorbed orally. Hence side effects would seem to be limited to disturbance of gut flora (which is already disturbed).

Thanks for your answers, Valentijn.

The use of oral vancomycin can lead to the development of resistant bacteria (in the gut), which are not susceptible to any antibiotic anymore. That leaves you with an infection that can't be treated.

Stool tests are fairly common.

The Redlabs stool tests do not test for the specific bacteria I mentioned, as far as I know.

I think society has been well-informed, yes. But here in the Netherlands at least, information about side effects is the responsibility of the pharmacy, not the doctor.

In Belgium and the Netherlands a doctor has a duty to inform the patient about the treatment and possible risks, complications and side-effects. This is an ethical and legal obligation. It is not good practice to leave this up to the pharmacy.

No idea. I don't have access to the medical records of his other patients

Thankfully not.

Do you have a source showing IgG is only used "on-label" for a deficiency? Because there's been an awful lot of research into using it for many other immune dysfunctions.

The official therapeutic indications are mentioned in the (patient) leaflet. None of those indications seems to be relevant in the patient population KDM sees. My point is that if it is used as such it is not based on solid scientific studies. In which case your statement isn't correct:
"He is using treatments which are already known, for patients in whom he finds problems for which those treatments are indicated."

 

[Jonathan Edwards]

With respect to publishing studies, yes I agree this is very important and should be done. However please tell me why the majority of ME physicians who currently treat patients in their clinics and have done for years, have not yet published research on their use of medications (whether licensed, unlicensed or off-label) for the treatment or symptomatic management of ME? This may be another good topic thread to discuss. I wonder if it's due to lack of funding, lack of time or due to the heterogeneity of treating ME patients.

The only reason why ME physicians have not published on their use of medications that I can think of is that they are not being rigorous about gathering evidence. Everyone was like that in the 1970s but medicine has moved on. So yes, this is a general problem, not specific to any one physician. Lack of funding is not relevant. It costs nothing to document new protocols for treatment in publications exactly as I did for rituximab (with no funding). It just takes the time involved in careful record keeping. And beyond pilot studies done in this way there is an ethical obligation to do formal controlled studies - which means having good enough documentation of initial studies. Patients have been let down almost universally by physicians not going through the necessary work.

 

[Vassie]

And just to wrap it up, I hate KDM for being the way he is, but what am I supposed to do? What is any of us supposed to do.

You try the off-label and the dangerous and the potentially useless to find something that works. Either you do that or you wait, and I can't wait, I'm getting worse too fast.

I know it is a terrible situation. Patients are desperate and that makes them vulnerable. No one should take advantage of that.

 

[Vassie]

@Vassie - If KDM diagnoses SIBO in some of his patients. He uses rifaximin or oral vancomycin, not IV. Rifaximin is commonly used worldwide and by NHS doctors for the treatment of SIBO despite it not having a license for this indication. If KDM detects abnormal levels of clostridia in the stool then he uses oral vancomycin again off label. However these antibiotics are non-absorbable so do not have systemic effects. But yes they will alter the gut microbiome which can have numerous physiological effects on the patient, but these are his intentions. He closely monitors response to treatment with repeat stool tests. Of course he is well aware of antibiotic resistance but tries to minimise this occurring by using very short pulsed antibiotic courses in combination with much longer courses of prebiotics.

In terms of gammanorm - he does screen IgG levels prior to treatment to determine if there is coexisting CVID or not. A few studies, even one from Fluge and Mella have detected lower IgG3 levels in ME patients (this may or may not have any clinical significance). However he is using gammanorm for it's immunomodulatory action. No one yet knows how immunoglobulins work in autoimmune diseases however they are used for many other disease states. There are a few published studies and anecdotal use in ME. From what I have read some people benefit significantly while others do not. This may be down to subtype differences in the ME population.

KDMs main focus is to reduce gut inflammation, use immunomodulatory treatments and modify the gut microbiome (if SIBO or high levels of pathogenic bacteria are present). This is all in the hope of providing symptomatic relief to his patients which he does routinely see otherwise he wouldn't be treating patients at all. He has devoted his whole career to supporting ME patients, does this not warrant a little bit of respect?

That means he uses these medications off-label and experimentally, which was my point. To be clear, I don't condemn this at all, but we (and he) do have to recognise this.

I am familiar with his hypothesis and his way of working. I used to have a lot of respect for him as well and I am very sad to say my positive image of him has been damaged for several reasons.

 

[Groggy Doggy]

Many drs dont directly treat cfs but treat the abnormal processes they find in cfs, thats the difference in looking at what someone may take who has cfs.

I am not quite following the logic. Could you give me an example of how a doctor would directly treat CFS?

 

[Valentijn]

Could you give me an example of how a doctor would directly treat CFS?

Rituximab.

 

[Groggy Doggy]

Rituximab.

Specially, how does Rituximab directly treat CFS? How are you defining CFS?

 

[Valentijn]

Specially, how does Rituximab directly treat CFS? How are you defining CFS?

Sorry, I'm not sure of the relevance.

 

[ivorin]

Rituximab.

Do you have any links as to the sustained remission rates of responders from phases 1 and 2? I'm not dissing, I'm genuinely interested to find the numbers.

 

[dadouv47]

He uses his patients blood tests results in ME conferences to show common issues he finds in his patients (Cytokines like IL-8S, sCD14, PGE2 etc...). He probably keep patient history but since so many of them stop his treatment due to many reasons (lack of money, worsening, remission etc...) and his treatments last so many time while his patients are doing other treatments at the same time, it's almost impossible for him to publish accurate and fair results.

If he would do it, some of you claiming for him to publish his patients datas would say that those same results are not reliable

 

[A.B.]

Fluge and Mella started the Rituximab research having only a single case report. Now they are conducting a large clinical trial.