Opinions on de Meirlier

[msf]

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.

No, but it does change the implication of it. If what you said about him applies to all the other ME physicians, then the implication is that seeing ANY ME physician is fraught with risk. If that is the implication, then it would be more accurate to phrase it like that. Some people only seem to care about KDM though.

 

[Alvin2]

No, but it does change the implication of it. If what you said about him applies to all the other ME physicians, then the implication is that seeing ANY ME physician is fraught with risk. If that is the implication, then it would be more accurate to phrase it like that. Some people only seem to care about KDM though.

If you say so
Any doctor who gives dangerous treatments that are contraindicated for good reason, tells patients the side effects don't matter till they are permanently harmed, makes proclamations that don't hold up, makes empty promises and so forth is in the same leagues as Dr Davis, Fluge, Mella, Naviaux and the other legitimate physicians [facepalm]
I learn something new everyday

 

[msf]

None of those are ME physicians (facepalm), they are ME researchers. I really think people need to think about these things before they start throwing allegations around.

Hint: they do not see patients outside of trials. If you want a list of ME physicians, please read JES´s post.

 

[msf]

Also, I know I just used it, but unless some of us are teenagers, can we not use ´facepalm?´

 

[Alvin2]

None of those are ME physicians (facepalm), they are ME researchers. I really think people need to think about these things before they start throwing allegations around.

Hint: they do not see patients outside of trials. If you want a list of ME physicians, please read JES´s post.

Also, I know I just used it, but unless some of us are teenagers, can we not use ´facepalm?´

I don't see why you have to protect KDM but more power to you. And a facepalm where appropriate is in wide use in many forums on the internet, in fact we need the smiley to be added to the collection we have, the brick wall is not quite the same

 

[msf]

I really don´t see why you don´t acknowledge valid points (such as the one I just made) unless it is a debate tactic to avoid giving the impression that you are losing the argument.

I will point it out again: the people you named are not ME physicians, therefore your criticism of KDM as a physician can not be construed as an endorsement of those people you named.

If you thought about this for second, the formula you want is pretty simple:

There are no approved treatments for ME, therefore ANYONE who prescribes any treatment for ME is doing so without sufficient evidence (according to the FDA). There are also no published studies about the success rates of different ME physicians, so therefore any speculation about success rates is just conjecture.

So, let´s take another second, and think about who qualifies as ANYONE. So, we have KDM, well done, but we also have Montoya, Peterson, Lerner (when he was still alive), Goldstein, Kauffman, Kogelnik, Chia, Goldstein, Cheney (when he was still treating people), and I´m sure there are many more. So, in order to make a point about the relative desirability of seeing KDM in particular, you need to demonstrate how he is different from those other ANYONEs.

 

[Alvin2]

I really don´t see why you don´t acknowledge valid points, such as the one I just made, unless it is a debate tactic to avoid giving the impression that you are losing the argument.

I will point it out again: the people you named are not ME physicians, therefore your criticism of KDM as a physician can not be construed as an endorsement of those people you named.

If you thought about this for second, the formula you want is pretty simple:

There are no approved treatments for ME, therefore ANYONE who prescribes any treatment to someone with ME is doing so without sufficient evidence (according to the FDA).

So, let´s take another second, and think about who qualifies as ANYONE. So, we have KDM, well done, but we also have Montoya, Peterson, Lerner (when he was still alive), Goldstein, Kauffman, Kogelnik, Chia, Goldstein, Cheney (when he was still treating people), and I´m sure there are many more. So, in order to make a point about the relative desirability of seeing KDM in particular, you need to demonstrate how he is different from those other ANYONE´s.

This is getting tiresome, if you must split hairs to defend (quoting myself)

Any doctor who gives dangerous treatments that are contraindicated for good reason, tells patients the side effects don't matter till they are permanently harmed, makes proclamations that don't hold up, makes empty promises and so forth

then good for you. I consider this a bad thing for any doctor to do (they do take an oath to do no harm) and if all doctors are like this as you claim then modern medicine must be horrifyingly terrible for every condition.
If this means i am losing the argument so be it, as i also said (again quoting myself)

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.

 

[msf]

I´m not splitting hairs, I´m just trying to use logic to arrive at a reasoned analysis. And you misunderstood the point I was making: I was not saying that there is no (FDA approved) evidence for treatments for ANY condition, but rather that there is no (FDA approved) evidence for treatments for ME, and therefore that any ME physician who prescribes treatments for ME is doing so without (FDA approved) evidence. I was not making a point about the whole of modern medicine, so I am not sure where you got that idea from.

Again, one more time, if you do not show how KDM is different than the physicians I named (or the vastly superior doctors you declined to name), then you are really just suggesting that people with ME do not see ANY physician who prescribes treatments for ME.

 

[Marky90]

I think that`s a valid point MSF, for me the issue is mainly how the physican presents his theories and treatment. As stated earlier I know more of KDM, despite not being his patient, based on interviews and patient reports, than i know of the others you mention. If the situation was the same there, the criticism would be the same. There`s not good reasons for bombastic promises, and that`s obviously just a personal opinion.

I don`t doubt the likely fact that many do feel better on his treatment, but many also get worse. I`ts problematic that they don`t conduct research imo, like what e.g. Jonathan did.

When I took rituximab privately, me and Øgreid could agree that, ok.. Maybe 60 % chance of success based on the studies. Still, it was a huge leap of faith as i`s only based on phase 2 in a disease with no biomarker. It seems right to always be very skeptical of physicians giving treatment when there is no data, in any disease. As I do not know KDMs intentions its not right to call him a crook, i`ll take that back. But the practice definitely has its ethical question marks due to how little we know, and the money involved. That again has to be balanced against the fact that one can`t blame patients nor physicians for wanting to try something. I guess there`s no blatant right, nor no blatant wrong.

 

[A.B.]

There is very clearly something wrong with the way KDM is operating. In the shadows, making promises that seem to change every year, with little to no evidence for many of his statements, going against other research findings when diagnosis bacterial infections in nearly every patient, not acknowleding adverse events, dubious lab tests, and a few other aspects. This is why KDM is being "singled out". There is such a high concentration of questionable things that it's alarming.

 

[msf]

Hey, I just alerted you to an analogous situation with Montoya in another thread A.B., I´m sure you will be just as concerned about that.

To me, A.B, it seems that you had a bad personal experience as a patient of KDM, and therefore have now changed your mind about him, which is fine (and I think it is right that you should tell people about that experience), but surely all your reservations about KDM were also true (if they are, in fact, true) before you went to see him? Or did you just not research him much beforehand? Or are the reservations you have about him now mainly based on your personal experience with him?

 

[A.B.]

Hey, I just alerted you to an analogous situation with Montoya in another thread A.B., I´m sure you will be just as concerned about that.

Oh just quit it with this "they hate KDM for no reason in particular" narrative. The Montoya situation is not analogous.

 

[msf]

Sure, I would just love it if you could use logic and facts to prove it. Marky90 at least was willing to entertain the idea that Montoya´s approach might be analogous, and was honest enough to admit that he did not know if it was because he just doesn´t know enough about Montoya.

 

[Alvin2]

There is very clearly something wrong with the way KDM is operating. In the shadows, making promises that seem to change every year, with little to no evidence for many of his statements, going against other research findings when diagnosis bacterial infections in nearly every patient, not acknowleding adverse events, dubious lab tests, and a few other aspects. This is why KDM is being "singled out". There is such a high concentration of questionable things that it's alarming.

Yeah, this is what i was getting at, thanks for explaining better

 

[keenly]

There is very clearly something wrong with the way KDM is operating. In the shadows, making promises that seem to change every year, with little to no evidence for many of his statements, going against other research findings when diagnosis bacterial infections in nearly every patient, not acknowleding adverse events, dubious lab tests, and a few other aspects. This is why KDM is being "singled out". There is such a high concentration of questionable things that it's alarming.

As opposed to most doctors who do nothing for CFS patients.

 

[Marky90]

As opposed to most doctors who do nothing for CFS patients.

That`s irrelevant to the topic

 

[ivorin]

I'm reposting this cause it seems relevant for this thread.

I've been a patient of KDM's for 6 months now. First off he made the mistake of supposing I had Biotoxin Illness from mould igg's. This was later proven to be wrong through vip and msh tests. That said, he always stated that was just the first step in treating me as I had (based on his test results) a late stage inflammatory disorder (this is what he calls ME now) and neurotoxicity.

In the meantime I did a lactulose breath test that did show Sibo and a marcons test that shows a positive result. He has now given me a new treatment plan that has2 pulses of Vancomycin and probiotics for Sibo, Gammanorm (scig), 4me (Nexavir), 5-htp, Lactoferrin, Choline, Acetyl l-Carnitine and Coq10.

He told me this is the best that can be done at the moment but that a new trial of drugs would be starting next year that may prove to be a solution (Jak inhibitors?).

I asked about Plasmapheresis (expensive) and Rituximab (risky and expensive).

He seems to boast a bit too much and doesn't tell you enough but he also seems to be trying and I have no one else to go to as I'm Croatian and don't have that much money any more.

If it was up to me, I would choose a doctor that has less patients and is more involved with them but that is not on offer.

 

[IreneF]

My experience with antibiotics for Mycoplasma was negative but not disastrous. I felt lousy and had side effects from the meds, and overall I didn't feel any improvement. Rinse and repeat.

I took so many antibiotics when I was a kid and never had any problems as far as I could tell. I just thought of them as basically benign. I've changed my mind, based on what I've read about gut organisms.

Many tests are antibody tests. Because you have antibodies to a pathogen does not mean you have an active infection. It just means that you have been exposed. You may not even have gotten sick. For example, I was born before there was a measles vaccine. I never had the measles. I once had an antibody test for it, and it turns out I had had what's called a subclinical case.

I think testing for every possible pathogen can turn into a fishing expedition. Tests have false positives, false negatives, cross reactions, all kinds of problems.

Now I turn down offers of antibiotics unless I am truly sick (beyond my baseline of sickness).

 

[AKB]

According to a recent PR post he has yet another one coming soon.

Can you tell me where to find this PR post?

 

[Vassie]

Can you tell me where to find this PR post?

You can find it here:
http://forums.phoenixrising.me/index.php?threads/interesting-first-appointment-with-dr-kdm.50270/