Interesting first appointment with Dr. KDM

Dechi

Dechi

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trishrhymes said:
It seems to me possible that by using these 2 specific tests, Dr Hyde may be diagnosing correctly a subset of ME sufferers. It also seems possible to me that there may be other people who do not meet these specific criteria, but still have Internationally defined ME/CFS. For example there may be other viruses or other infectious agents that can set off and/or maintain ME symptoms.

I have not looked in depth into Dr Hyde's work - I have glanced through the paper you link to, which looks impressive - has he published any studies on this that show, for example that a very high proportion of ME sufferers meet these criteria, and also that healthy controls and people with other fatigue conditions do not?

This is not a criticism of Dr Hyde - I am genuinely both ignorant and interested.
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Dr Hyde says there is primary ME (enterovirus), and secondary ME from parvovirus and other infectious agents or chemical exposure. So he's not excluding any main recognized causes, from what I know.

Since he is 80'years old now, he is trying to spend the rest of his meaningful life to help as many people as he can. He is currently trying to educate the medical community by sharing his knowledge and material. He is also still doing conferences. And he sees patiens in North America and Europe. Nobody can do it all. We're lucky he's still seeing patients at his age.

I agree it would have been interesting to have specific research on the subject, though.
 
K

keenly

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Thinktank said:
I like the fact that he's so devoted to our cause, but we were already told a few times in the past that "the" cause of ME was found, which turned out not to be so.
First it was XMRV, then H2S, then it was chronic lyme, now it's something in the gut.

This time i need to see it validated and proven before i get enthusiastic.
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Hydrogen sulfide is a major issue in CFS patients. There is no one cause, or treatment, and there never will be.
 
M

msf

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Kina said:
He, personally, has found the cause of ME?

I wasn't aware that he has being doing intensive research into ME.

I wonder why July.

Is he treating you for Lyme disease?
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I find this quite surprising - not KDM´s claim to have found the cause of ME, but rather the fact that you did not know that he is intensively researching ME. I guess it might come down to your interpretation of ´intensively,´ but he has published more articles on ME than almost any researcher I can think of, and is the medical director of the WPI, or whatever it is now called (the Nevada something, as I recall).

As for people being cynical about whether he has found the ´cause,´ I think that is fair enough, since many doctors (including KDM) have claimed or inferred the same thing, but I think people are forgetting that science moves forwards in small increments, and that just because none of the things KDM or anyone has found until now are the key to the disease doesn´t mean that they are not important or leading us towards the answer.
 
U

Undisclosed

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msf said:
I find this quite surprising - not KDM´s claim to have found the cause of ME, but rather the fact that you did not know that he is intensively researching ME. I guess it might come down to your interpretation of ´intensively,´ but he has published more articles on ME than almost any researcher I can think of, and is the medical director of the WPI, or whatever it is now called (the Nevada something, as I recall).

As for people being cynical about whether he has found the ´cause,´ I think that is fair enough, since many doctors (including KDM) have claimed or inferred the same thing, but I think people are forgetting that science moves forwards in small increments, and that just because none of the things KDM or anyone has found until now are the key to the disease doesn´t mean that they are not important or leading us towards the answer.
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My definition of intensive would be include the usual definition of 'intensive' as in thorough, rigorous, all-out concentrated, exhaustive research (of ME/CFS).

I can't imagine he could come close to concentrating his time on researching ME, let alone finding the cause because he spends a lot of time seeing patients. Quantity of articles doesn't necessarily translate into quality or reliability or validity. I know he is the medical director of what used to be the WPI which is now called the Nevada Center for Biomedical Research. He also uses the former WPI to see patients so he isn't there to do intensive research either.

There is a huge difference between saying you are researching ME and have some interesting findings over stating you have found the 'cause' of the disease. I am eagerly waiting to see what he has to say in July.
 
M

msf

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Kina said:
My definition of intensive would be include the usual definition of 'intensive' as in thorough, rigorous, all-out concentrated, exhaustive research (of ME/CFS).

I can't imagine he could come close to concentrating his time on researching ME, let alone finding the cause because he spends a lot of time seeing patients. Quantity of articles doesn't necessarily translate into quality or reliability or validity. I know he is the medical director of what used to be the WPI which is now called the Nevada Center for Biomedical Research. He also uses the former WPI to see patients so he isn't there to do intensive research either.

There is a huge difference between saying you are researching ME and have some interesting findings over stating you have found the 'cause' of the disease. I am eagerly waiting to see what he has to say in July.
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Ok, but hardly anyone would fit your criteria. Lipkin and Montoya wouldn´t, as they both research other areas alongside ME, as does Naviaux (someone just posted his study on autism). Also, research isn´t done by one individual, so I guess your question was valid about whether KDM has found the cure personally. More likely he said that ´we´ have found something. As in the case of Lipkin, it´s probably best not to decide what someone has said/done based only on someone else´s testimony.
 
U

Undisclosed

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msf said:
Ok, but hardly anyone would fit your criteria. Lipkin and Montoya wouldn´t, as they both research other areas alongside ME, as does Naviaux (someone just posted his study on autism). Also, research isn´t done by one individual, so I guess your question was valid about whether KDM has found the cure personally. More likely he said that ´we´ have found something. As in the case of Lipkin, it´s probably best not to decide what someone has said/done based only on someone else´s testimony.
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The way it was presented in this thread was that he said he found a cure cause. Iwouldn't want to call a member a liar.
 
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M

msf

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I´m not calling them a liar either, I´m just suggesting that they might not have reported what KDM said with 100% accuracy. Everyone is liable to do this - for example, you turned ´cause´ in the opening post into ´cure´ in your last one, even though you had previously pointed out that they are quite different, possibly because I did the same thing in my last post.
 
M

msf

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One thing that KDM does do, in my experience, is simplify things for patients in a way that might at times be slightly misleading. I think if Davis or someone talked to him, researcher to researcher, he wouldn´t use a word like cause, even if he did in fact do so in this instance with a patient. Talk of a cause is an oversimplification - are we talking about proximate or ultimate? If ultimate, is the cause the trigger or whatever predisposes someone to the trigger? That´s why I think the word ´key´ is more useful. The key would be something we discover about ME that allows for a cure/effective treatment to be discovered.
 
U

Undisclosed

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msf said:
I´m not calling them a liar either, I´m just suggesting that they might not have reported what KDM said with 100% accuracy. Everyone is liable to do this - for example, you turned ´cause´ in the opening post into ´cure´ in your last one, even though you had previously pointed out that they are quite different, possibly because I did the same thing in my last post.
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Thank you for pointing out my error. I definitely meant cause as that was what was presented in the first post. I guess I shouln't read or answer posts at 1 am in the morning the day after an international flight as I am extremely exhausted. You basically muddied the waters with your use of the word 'cure'. SamB who started this thread did say 'cause' and didn't come back to correct any misperceptions after members started discussing it.

In fact they said:

Thats what I got from what he told me. He said he has been working really hard the last 12 weeks and he has found the the cause. My brain wasnt working the best at the time. I had hardly any sleep. He seemed excited to tell me though. It was my first appointment so only the lactose test today.
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My comments were:

Kina said:
He, personally, has found the cause of ME?

I wasn't aware that he has being doing intensive research into ME.

I wonder why July.

Is he treating you for Lyme disease?
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You decided to quibble about my use of the word of 'intensive'. As far as I am concerned, KDM doesn't do intensive research and he shouldn't even be suggesting to patients in any manner that he has found the 'cause' of ME. From KDM's what will likely follow are tests and treatments provided by himself.

I agree that very few do intensive research but there are some organizations now that are throwing a lot of time and money into research.

msf said:
One thing that KDM does do, in my experience, is simplify things for patients in a way that might at times be slightly misleading. I think if Davis or someone talked to him, researcher to researcher, he wouldn´t use a word like cause, even if he did in fact do so in this instance with a patient. Talk of a cause is an oversimplification - are we talking about proximate or ultimate? If ultimate, is the cause the trigger or whatever predisposes someone to the trigger? That´s why I think the word ´key´ is more useful. The key would be something we discover about ME that allows for a cure/effective treatment to be discovered.
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I am not sure how saying you have found the cause of ME is a simplifying statement. It's fairly black and white. One has either has found the cause, might have found the cause or hasn't found the cause. So are you saying KDM has to dumb things down for patients as opposed to a researcher like Ron Davis. As far as I am concerned, SamB said KDM stated he has found the cause. All I can do is take those words at face value and really KDM has made quite a few statements about ME over the years that have been like this that have come to nothing. So rather than speculate what KDM really meant eg 'key' vs 'cause', lets just wait for his big reveal in July.

Please excuse an errors in the post, misuse of words, brain is scrambled.
 
M

MEMum

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@ Kina
Are you over in UK, by any chance?
Just wondering if you are hoping to make the IiME conference?
 
M

msf

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Kina said:
Thank you for pointing out my error. I definitely meant cause as that was what was presented in the first post. I guess I shouln't read or answer posts at 1 am in the morning the day after an international flight as I am extremely exhausted. You basically muddied the waters with your use of the word 'cure'. SamB who started this thread did say 'cause' and didn't come back to correct any misperceptions after members started discussing it.

In fact they said:



My comments were:



You decided to quibble about my use of the word of 'intensive'. As far as I am concerned, KDM doesn't do intensive research and he shouldn't even be suggesting to patients in any manner that he has found the 'cause' of ME. From KDM's what will likely follow are tests and treatments provided by himself.

I agree that very few do intensive research but there are some organizations now that are throwing a lot of time and money into research.



I am not sure how saying you have found the cause of ME is a simplifying statement. It's fairly black and white. One has either has found the cause, might have found the cause or hasn't found the cause. So are you saying KDM has to dumb things down for patients as opposed to a researcher like Ron Davis. As far as I am concerned, SamB said KDM stated he has found the cause. All I can do is take those words at face value and really KDM has made quite a few statements about ME over the years that have been like this that have come to nothing. So rather than speculate what KDM really meant eg 'key' vs 'cause', lets just wait for his big reveal in July.

Please excuse an errors in the post, misuse of words, brain is scrambled.
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No problem. From my perspective, KDM has and will continue to do valuable research, which is why people like Lipkin and Hanson quote (and build upon) his studies. I also hope that those research groups with more money than his are able to verify and enlarge upon his group´s work.
 
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