No, I gave advice for how someone could deal with someone that they perceive as a jackass.Reserving judgement? You just called me a jackass like 4 times?
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No, I gave advice for how someone could deal with someone that they perceive as a jackass.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.
To my knowledge KDM does not diagnose every patient with an infection. That is an incorrect claim and one not based on evidence.
@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.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.
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.@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) 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.
Where are you getting these numbers?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?
More cases improved then worsening means a numerical result even if you don't provide an exact number, 5-10% is a numerical result.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.
AnytimeThanks for your good wishes.
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?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.
ThanksI think you have said it very well about KDM, I agree but could not verbalise it as well as you.
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.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?
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 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.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.