Opinions on de Meirlier

[Valentijn]

Reserving judgement? You just called me a jackass like 4 times?

No, I gave advice for how someone could deal with someone that they perceive as a jackass.

 

[Marky90]

No, I gave advice for how someone could deal with someone that they perceive as a jackass.

I think you are aware of how u phrased that

 

[JadeD]

To my knowledge KDM does not diagnose every patient with an infection. That is an incorrect claim and one not based on evidence. I was not diagnosed with any co-infections and therefore am not being treated in this manner. He uses a personalised medicine approach.

Again the general evidence is mixed regarding infection and ME. However there are many ME physicians that treat active infections (which may or may not be related to the ME) when the blood results from PCRs etc dictate them to do so.

For example Montoya using antivirals, Chia using oxymatrine and co for suspected enterovirus, Peterson has used a wide array of antivirals for reactivated ebv, cmv etc. All of these doctors to my knowledge treat the patient based on standardised blood tests and KDM is of no exception.

These doctors are attempting to give an improved quality of life to patients with ME while research is still being done to identify the cause.

If you read the International Consensus Primer for Medical Practitioners, to which KDM co-authored (albeit published in 2011/12).

http://www.investinme.org/Documents...nternational Consensus Primer -2012-11-26.pdf

You will see that the chance of an ME patient developing opportunistic infections is possible due to immune dysregulation. Although I agree that the current evidence is very mixed. I do not see what the problem is if a clinician decides to treat one of the opportunistic infections based on reliable lab evidence.

 

[A.B.]

To my knowledge KDM does not diagnose every patient with an infection. That is an incorrect claim and one not based on evidence.

Okay. He diagnoses almost every patient with one or multiple infections. What diagnosis did he give you?

 

[msf]

Actually, I wasn´t really hopeful that I would change Marky90´s beliefs on this matter, I was just trying to help people who don´t really have the time/inclination to analyse everything people say to tell the difference between fact and mere opinion. I´m sure he didn´t really think he would change my beliefs on this matter and therefore wasn´t really addressing me with his comments either, so let´s just chalk up any perceived or real insults (on both sides) to collateral damage.

 

[neweimear]

There is no evidence that rituximab responders have more EBV in their B cells than anyone else. Note that virtually all adults have EBV in their B cells. It is a normal part of being a human adult. There is no point 'getting it checked' since we all have it. This seems to be another example of ignorance about basic science.

Please remember that rituximab is much more dangerous if given by someone who does not understand what it does. Relatively few physicians do. We have had in the past a scientist and a physician talking about giving it at low dose - which is the worst thing to do because it achieves nothing and can make you immune to the drug. When rituximab was first used by ignorant physicians in cancer people died unnecessarily. Please be careful.

@Jonathan Edwards thankyou Jonathan but the trouble is finding someone knowledgable to give the drug. Will any consultants in the UK or Ireland be willing to give it to us if Norwegian results are good? They will be hard to find. And desperate patients cannot wait forever. That is why patients will end up heading to doctors anywhere that will give the drug.

 

[Olena]

I am a patient of Dr. KDM and I have not been helped by antibiotics for problems with the intestines. The analysis showed a deviation in my Zonulin and mucus, but there is no genetic intolerance to the products. Nevertheless, I can not tolerate gluten, sugar, fruit, dairy products for the last 4 years, and this is because of the infection that Dr. KDM can not find in me. So what's the point in intestinal antibiotics, if my bacteria analysis is not bad? What is the use of prescribing an antibiotic for me if I have a lower part of the immune cells? I have lower than normal macrophages, nk cells, TNK cells, and B lymphocytes. I went to the clinic for immune treatment, but got a typical one.

 

[Alvin2]

@Jonathan Edwards thankyou Jonathan but the trouble is finding someone knowledgable to give the drug. Will any consultants in the UK or Ireland be willing to give it to us if Norwegian results are good? They will be hard to find. And desperate patients cannot wait forever. That is why patients will end up heading to doctors anywhere that will give the drug.

Fluge and Mella (who discovered and are running the Rituximab trials) have urged people not to try it off label, it has serious hazards and the delivery dosages and timings need to be properly tailored to each patient otherwise it can fail when it might have succeeded when done properly. I know we all want the answer now, this disease really sucks and many of us continue to get worse and don't know how we are going to manage in the future. Nonetheless when dealing with chemicals that could harm us if used incorrectly we should wait till the protocol is worked out and its proven.

As for KDM, i have not seen him but i have come to the conclusion he is a well meaning doctor who has some knowledge combined with a lot of supposition. His patients are basically guinea pigs, he does his tests and prescribes treatments, with his partial knowledge, experience and experimentation he leaves a trail of patients that run the gambit from improved to no effect to worsened. He claims to know more then he does and sometimes harms patients (violating the Hippocratic oath) and even makes proclamations that turn out to be vapourware. According to a recent PR post he has yet another one coming soon.
He is a combination of researcher, experimenter and charlatan. By going to him your playing Russian roulette with your health. Sometimes you win, sometimes you lose. Is it worth the gamble, ME/CFS is a horrifying disease, is getting even worse worth it? For some people the answer may be yes, for me the answer is no.

 

[dadouv47]

Fluge and Mella (who discovered and are running the Rituximab trials) have urged people not to try it off label, it has serious hazards and the delivery dosages and timings need to be properly tailored to each patient otherwise it can fail (when it might have succeeded when done properly) or using it may cause worse problems. I know we all want the answer now, this disease really sucks and many of us continue to get worse and don't know how we are going to manage in the future. Nonetheless when dealing with chemicals that could harm us if used incorrectly we should wait till the protocol is worked out and its proven.

As for KDM, i have not seen him but i have come to the conclusion he is a well meaning doctor who has some knowledge combined with a lot of supposition. His patients are basically guinea pigs, he does his tests and prescribes treatments, with his partial knowledge, experience and experimentation he leaves a trail of patients that run the gambit from improved to no effect to worsened. He claims to know more then he does and sometimes harms patients (violating the Hippocratic oath) and even makes proclamations that turn out to be vapourware.
He is a combination of researcher, experimenter and charlatan. By going to him your playing Russian roulette with your health. Sometimes you win, sometimes you lose. Is it worth the gamble, ME/CFS is a horrifying disease, is getting even worse worth it? For some people the answer may be yes, for me the answer is no.

There are more cases of remission (or people getting 80% of their previous health) than cases of worsening.

I guess it's more fair to ask if you are willing to spend A LOT of money to have x % of getting better and 5-10% of worsening.

 

[Alvin2]

There are more cases of remission (or people getting 80% of their previous health) than cases of worsening.

I guess it's more fair to ask if you are willing to spend A LOT of money to have x % of getting better and 5-10% of worsening.

Where are you getting these numbers?

 

[dadouv47]

Where are you getting these numbers?

What numbers? I only told about 5-10% of worsening. I don't even think those numbers are accurate (think they may be a little bit lower)

 

[Alvin2]

What numbers? I only told about 5-10% of worsening. I don't even think those numbers are accurate (think they may be a little bit lower)

More cases improved then worsening means a numerical result even if you don't provide an exact number, 5-10% is a numerical result.
If he knows what he is doing then there should not be a stream of worse off patients who have permanent harm, he is experimenting with things he doesn't understand then patting himself on the back when his patients win.
He prescribes treatments that are not recommended (for good reasons), and people being told they are herxing then end up harmed is not good medicine. Making grandiose proclamations that turn out to be nonsense is not a good sign

All that said anyone who believes is not going to listen to a word i say, and i sincerely hope your not permanently harmed if you go to him.

 

[dadouv47]

More cases improved then worsening means a numerical result even if you don't provide an exact number, 5-10% is a numerical result.
If he knows what he is doing then there should not be a stream of worse off patients who have permanent harm, he is experimenting with things he doesn't understand then patting himself on the back when his patients win.
He prescribes treatments that are not recommended (for good reasons), and people being told they are herxing then end up harmed is not good medicine. Making grandiose proclamations that turn out to be nonsense is not a good sign

All that said anyone who believes is not going to listen to a word i say, and i sincerely hope your not permanently harmed if you go to him.

Thanks for your good wishes.

 

[Alvin2]

Thanks for your good wishes.

Anytime

 

[neweimear]

Fluge and Mella (who discovered and are running the Rituximab trials) have urged people not to try it off label, it has serious hazards and the delivery dosages and timings need to be properly tailored to each patient otherwise it can fail when it might have succeeded when done properly. I know we all want the answer now, this disease really sucks and many of us continue to get worse and don't know how we are going to manage in the future. Nonetheless when dealing with chemicals that could harm us if used incorrectly we should wait till the protocol is worked out and its proven.

As for KDM, i have not seen him but i have come to the conclusion he is a well meaning doctor who has some knowledge combined with a lot of supposition. His patients are basically guinea pigs, he does his tests and prescribes treatments, with his partial knowledge, experience and experimentation he leaves a trail of patients that run the gambit from improved to no effect to worsened. He claims to know more then he does and sometimes harms patients (violating the Hippocratic oath) and even makes proclamations that turn out to be vapourware. According to a recent PR post he has yet another one coming soon.
He is a combination of researcher, experimenter and charlatan. By going to him your playing Russian roulette with your health. Sometimes you win, sometimes you lose. Is it worth the gamble, ME/CFS is a horrifying disease, is getting even worse worth it? For some people the answer may be yes, for me the answer is no.

I think you have said it very well about KDM, I agree but could not verbalise it as well as you. I know full well that we cannot go near rituximab until we have phase 3 results. @Alvin2 have you any idea where we will get knowledgable doctors to prescribe ritux post phase 3 trial. I certainly do not want to wait until UK trial is complete, they are talking about that trial for years. I live in Ireland. Also @Alvin2 my understanding was that doses are given as per protocol, @ 3,6,9 and 12 months. Not at varied times depending on each person. From what you are saying, infusions are given at times appropriate to each individual patient?

 

[Alvin2]

I think you have said it very well about KDM, I agree but could not verbalise it as well as you.

Thanks

I know full well that we cannot go near rituximab until we have phase 3 results. @Alvin2 have you any idea where we will get knowledgable doctors to prescribe ritux post phase 3 trial. I certainly do not want to wait until UK trial is complete, they are talking about that trial for years. I live in Ireland. Also @Alvin2 my understanding was that doses are given as per protocol, @ 3,6,9 and 12 months. Not at varied times depending on each person. From what you are saying, infusions are given at times appropriate to each individual patient?

I think Dr @Jonathan Edwards would be the one to ask about dosing and timelines, i have read posts on PR from various threads that were complicated and i don't quite remember the details so i don't want to give you wrong information.

 

[msf]

Fluge and Mella (who discovered and are running the Rituximab trials) have urged people not to try it off label, it has serious hazards and the delivery dosages and timings need to be properly tailored to each patient otherwise it can fail when it might have succeeded when done properly. I know we all want the answer now, this disease really sucks and many of us continue to get worse and don't know how we are going to manage in the future. Nonetheless when dealing with chemicals that could harm us if used incorrectly we should wait till the protocol is worked out and its proven.

As for KDM, i have not seen him but i have come to the conclusion he is a well meaning doctor who has some knowledge combined with a lot of supposition. His patients are basically guinea pigs, he does his tests and prescribes treatments, with his partial knowledge, experience and experimentation he leaves a trail of patients that run the gambit from improved to no effect to worsened. He claims to know more then he does and sometimes harms patients (violating the Hippocratic oath) and even makes proclamations that turn out to be vapourware. According to a recent PR post he has yet another one coming soon.
He is a combination of researcher, experimenter and charlatan. By going to him your playing Russian roulette with your health. Sometimes you win, sometimes you lose. Is it worth the gamble, ME/CFS is a horrifying disease, is getting even worse worth it? For some people the answer may be yes, for me the answer is no.

You just described every ME physician out there, or at least the ones who aren't just charlatans or time-wasters anyway. If you doubt this, just search for Montoya´s latest radio interview and hear what claims he makes about his patient´s improvements.

 

[Alvin2]

You just described every ME physician out there, or at least the ones who aren't just charlatans or time-wasters anyway. If you doubt this, just search for Montoya´s latest radio interview and hear what claims he makes about his patient´s improvements.

I don't know much about Montoya but you could be correct, since we have no disease mechanism and no approved treatment we don't have a huge arsenal to attack the disease with.
We can try to work on the symptoms, digest new research and work on finding the mechanism/cause and we can do our best to make sure people are not being diagnosed with ME/CFS who don't have it. Treating comorbid conditions can also be done. We can also accept some people do improve spontaneously and its likely a percent of the improvements would have happened with no treatment given and its coincidence. Once we have a disease mechanism we will know more and be able to research this better.

All this said doesn't change anything i said about KDM.

 

[JES]

I think this thread has gone way far with some of the allegations against KDM, and I can say that even without being his patient. I was recently critical about the way which KDM has announced that he has found the cause of CFS/ME to a couple of his patients. However, I agree with @msf that he in many ways operates exactly like other well known CFS/ME doctors. These doctors are all focused on some aspect of the disease and attempt to treat that. KDM focuses on gut, Chia on enteroviruses, Montoya on antivirals, Goldstein prescribed dozens of drugs to "reset the brain" of his patients purely based on what he thought worked for his patients, etc. These doctors all have a hypothesis about what causes/drives CFS/ME and treat based on this hypothesis, but they all have in common that their treatments haven't been demonstrated to work in any large scale trial.

 

[Vassie]

Very good analysis @Alvin2

With a disease that isn't understood and that hasn't been solved you become desperate at a certain point. And that despair makes us all very vulnerable.