Article: Third Time Is Not the Charm - Dutch XMRV Study Comes Up Negative
- Thread starter Phoenix Rising Team
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Thanks for this Cort.
It put a little bounce into my keyboard bashing.
It put a little bounce into my keyboard bashing.
Many thanks for your (as always) dispassionate coverage.I look forward to the day you cast your unbiased eye over more cheery news.
I do too. I imagine if it shows up we'll enjoy it all the more after all this 
The main reason why the Dutch study didn't reveal any XMRV presence is simple: none of these 32 patients had ME.
Not only did they use the deviant Oxford criteria (unexplained chronic fatigue) to obtain these samples, but Nijmegen also refuse patients that insist on having an organic illness or are involved in legal procedures, and furthermore accept only light cases of chronic fatigue. One of the persons whose blood was sampled by the authors in 1991/2 has come forward and stated that no effort to make a diagnosis was ever made.
So it's a clear case of garbage in, garbage out.
Regards,
Guido den Broeder
ME/CVS Vereniging
The Netherlands
Not only did they use the deviant Oxford criteria (unexplained chronic fatigue) to obtain these samples, but Nijmegen also refuse patients that insist on having an organic illness or are involved in legal procedures, and furthermore accept only light cases of chronic fatigue. One of the persons whose blood was sampled by the authors in 1991/2 has come forward and stated that no effort to make a diagnosis was ever made.
So it's a clear case of garbage in, garbage out.
Regards,
Guido den Broeder
ME/CVS Vereniging
The Netherlands
can't figure out how to make paragraphs !
Oh Cort, for Pete's sake.... You know who Jos van der Meer and Blijenburg are....
For your information, Van der Meer posted in the Dutch News paper NRC back in October that he didn't have much respect for the WPI study and that he was 'going to repeat the study'. He then already stated it would be bad for the patients if they would all start to believe a virus was involved and then decide not to want to follow their CBT/GET anymore.
Another statement from that article was "Up until now WE have been able to prove beyond doubt that any of the previously noted agents do not cause chronic fatigue" (note, the word "syndrome" is falling off here.)
Another one: "Van der Meer stood at the cradle of the development of CBT and that is the therapy with the best results"
Source: Article NRC Wetenschap October
Educated patients like Guido and myself are not worried about the quality of the research. It sucks. They found what they set out to find, which is nothing. I FULLY second Guido's comment above. I also saw the testimony of that patients Guido refers to. Back in 1991 patients were taken in after filling out a questionnaire, no medical research was done. I am baffled they actually took a blood sample!
In the end, 2 plus 2 equals 4. That's science. 2 plus 1 is NOT 4, well it's maths actually, lol. The point is, as you state as well, that the truth will come out eventually. And as far as the quality of the laboratories go... would you really have preferred REEVES was overseeing XMRV research at the CDC ? The lab might be fine.... but....
What DOES annoy me to the greatest extend ANYTHING has bothered me in a long time, is the press release Jos van der Meer sent out to ALL dutch press agencies and was actually blindly copied and printed in newspapers all over holland. I'll post the translation below. This man speaks as if he is THE authority on ME/CFS in world, press just copy/paste his press release NO press agency is investigating the XMRV issue by any means.
I've personally translated this item and i'm open for improvements on it, but i promise i really did not make it look worse or better than it was. He speaks as if he's the sole expert in the world and provides the general audience (with publications of this message in 15 newspapers that will reach a lot of the 15 million people in our country) with faulty information. Thts a matter of concern. We are fighting so hard to get our illnesses acknowledged and to get governments to CONSIDER funding biomedical research. This is not helping (understatement)
Source: www.diagnosesupport.com
Carla-NL,
Off my soap box now
Oh Cort, for Pete's sake.... You know who Jos van der Meer and Blijenburg are....
For your information, Van der Meer posted in the Dutch News paper NRC back in October that he didn't have much respect for the WPI study and that he was 'going to repeat the study'. He then already stated it would be bad for the patients if they would all start to believe a virus was involved and then decide not to want to follow their CBT/GET anymore.
Another statement from that article was "Up until now WE have been able to prove beyond doubt that any of the previously noted agents do not cause chronic fatigue" (note, the word "syndrome" is falling off here.)
Another one: "Van der Meer stood at the cradle of the development of CBT and that is the therapy with the best results"
Source: Article NRC Wetenschap October
Educated patients like Guido and myself are not worried about the quality of the research. It sucks. They found what they set out to find, which is nothing. I FULLY second Guido's comment above. I also saw the testimony of that patients Guido refers to. Back in 1991 patients were taken in after filling out a questionnaire, no medical research was done. I am baffled they actually took a blood sample!
In the end, 2 plus 2 equals 4. That's science. 2 plus 1 is NOT 4, well it's maths actually, lol. The point is, as you state as well, that the truth will come out eventually. And as far as the quality of the laboratories go... would you really have preferred REEVES was overseeing XMRV research at the CDC ? The lab might be fine.... but....
What DOES annoy me to the greatest extend ANYTHING has bothered me in a long time, is the press release Jos van der Meer sent out to ALL dutch press agencies and was actually blindly copied and printed in newspapers all over holland. I'll post the translation below. This man speaks as if he is THE authority on ME/CFS in world, press just copy/paste his press release NO press agency is investigating the XMRV issue by any means.
I've personally translated this item and i'm open for improvements on it, but i promise i really did not make it look worse or better than it was. He speaks as if he's the sole expert in the world and provides the general audience (with publications of this message in 15 newspapers that will reach a lot of the 15 million people in our country) with faulty information. Thts a matter of concern. We are fighting so hard to get our illnesses acknowledged and to get governments to CONSIDER funding biomedical research. This is not helping (understatement)
Source: www.diagnosesupport.com
Carla-NL,
Off my soap box now
I hope you're right. Hopefully the next study will turn out better. Its kind of weird that 2/3rds of the early studies came from the CBT camp. They sure jumped all over this. Maybe the fourth times the charm. I sure hope so. I go up and down like a yo-you with the news about XMRV, that's for sure. Its hard to know what to think.
A
-
anne
It sounds like such a conspiracy theory to say this, but those are the people most invested in having this not be true. People with their names on these studies have a lot of professional credibility wrapped up in CFS being psychological....
Cort, you do an excellent job with CFS/ME history. Remember, there was a huge controversial debate among scientists about the cause of AIDS in the early days, one camp insisting the destruction of CD-4's was caused by the immune system itself and not a retrovirus. It was distinguished Dr. David Ho, LA infectious disease specialist on the front lines seeing many of the first patients who in utter frustration made that famous outburst at the Keystone Symposium, "It's the virus, stupid!" that turned the tide and directed worldwide attention and research to a retroviral cause of AIDS. Drs. Peterson & Mikovits are turning the tide of CFS/ME research and focusing attention on retroviruses which is a very good thing.
Gemini
Gemini
Cort thanks for the post.I was especially excited to read:"they also found it in the smooth muscles lining the blood vessels - a very nice fit for CFS patients with orthostatic intolerance."Would you please let us know where you found this information?
Looks like anyone wanting to demonstrate real results in this field will have to have unimpeachable techniques, verification trails, duplicate labs, and quite careful PR. That's going to discourage some, but if indeed xmrv plays a role in either ME or a specific, identifiable subset and another group can demonstrate this they will shine. I wish I were in a position to evaluate the science. I don't know what conclusion, if any, to draw from the results so far. Random thoughts: Meanwhile, I wonder if too much ink about virus research isn't becoming a distraction from the disease we want to get rid of. Even if it's triggered by this particular virus AND an anti-viral for it can be found it doesn't mean we're out of the fog! Maybe we have an immune system collapse that does not resolve by limiting/removing one virus; maybe we all have a virus, but not all have the same virus. Getting well may require multiple steps, different for different people, rather than "here's the magic pill, have a nice day", but medicine today is set up to look for simple causes and patentable drugs. I don't think we have a simple disease.
Cort, Prachi Sharma at CROI did look for XMRV in the brains of those monkeys and found some in the brainstem but not in the cerebral cortex/ cerebellum according to her talk and slides. What she found was weaker than what was found in the other organs as you mentioned. This is in her slide and she mentioned it very briefly. However, I agree this was not the focus of her work. She did say at the end that they were going back to look at more organs and look closer.
This article talks about "Chronic fatigue" (note the absence of "syndrome") which is defined by the WHO as a psychological/behavioural disorder. That is its definition, so it IS a psychological disorder.
ME (myalgic encephalomyelitis) is defined as a neuro-immune disorder by the WHO.
The two separate illnesses are muddled up by Wessely and others and called "chronic fatigue syndrome" and they have propagated their confusion so well that even people like me say they have Chronic fatigue syndrome, when I have no such thing, and indeed, officially, it does not exist. I have ME. My illness is organic and has no psychological component.
So clearly the researchers are researching two separate illnesses.
The WPI was researching ME.
This Dutch study is researching "chronic fatigue".
ME (myalgic encephalomyelitis) is defined as a neuro-immune disorder by the WHO.
The two separate illnesses are muddled up by Wessely and others and called "chronic fatigue syndrome" and they have propagated their confusion so well that even people like me say they have Chronic fatigue syndrome, when I have no such thing, and indeed, officially, it does not exist. I have ME. My illness is organic and has no psychological component.
So clearly the researchers are researching two separate illnesses.
The WPI was researching ME.
This Dutch study is researching "chronic fatigue".
Athene, I don't disagree with the point you're making, but I think it is much more complicated than just dismissing the name "chronic fatigue syndrome" and using ME instead. It needs to be noted that WPI connected XMRV to "chronic fatigue syndrome" and used the Fukuda and Canadian definitions of CFS Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.
And although the Dutch study is titled XMRV not detected in Dutch chronic fatigue patients, it refers to the Oxford definition of chronic fatigue syndrome and uses CFS throughout the article.
I think the real debate is around the diagnostic criteria of "chronic fatigue syndrome" being used Oxford, Fukuda, Canadian, Reeves and unfortunately, the name "chronic fatigue syndrome" cannot be dismissed easily. I think it is crucial that we know what criteria is being meant by the term and vigorously protest when it is being broadened into uselessness by Reeves and Wessely (as we are doing so well on these forums). At the same time, I think we need to remember that it was the initial Incline Village outbreak that got us all the dreaded label from the CDC this was in no way an outbreak of "chronic fatigue" or a depressive disorder and yet chronic fatigue syndrome is the name we got saddled with.
I have been diagnosed with chronic fatigue syndrome. I have never been diagnosed with ME. I have tested positive for XMRV. This leaves me, for now, connected with this unfortunate label.
It is absolutely frustrating and disheartening that after all these years we are still stuck in the middle of a muddle. I know a lot of us don't like the term ME/CFS, but maybe for awhile, that's the best we can do. After all, these forums are "aboutmecfs."
And although the Dutch study is titled XMRV not detected in Dutch chronic fatigue patients, it refers to the Oxford definition of chronic fatigue syndrome and uses CFS throughout the article.
I think the real debate is around the diagnostic criteria of "chronic fatigue syndrome" being used Oxford, Fukuda, Canadian, Reeves and unfortunately, the name "chronic fatigue syndrome" cannot be dismissed easily. I think it is crucial that we know what criteria is being meant by the term and vigorously protest when it is being broadened into uselessness by Reeves and Wessely (as we are doing so well on these forums). At the same time, I think we need to remember that it was the initial Incline Village outbreak that got us all the dreaded label from the CDC this was in no way an outbreak of "chronic fatigue" or a depressive disorder and yet chronic fatigue syndrome is the name we got saddled with.
I have been diagnosed with chronic fatigue syndrome. I have never been diagnosed with ME. I have tested positive for XMRV. This leaves me, for now, connected with this unfortunate label.
It is absolutely frustrating and disheartening that after all these years we are still stuck in the middle of a muddle. I know a lot of us don't like the term ME/CFS, but maybe for awhile, that's the best we can do. After all, these forums are "aboutmecfs."