i really can't believe that the more players that are brought into CFS/ME is producing bigger divisions and controversy rather than a consensus. WTH?
Retrovirology Publishes Five Papers on XMRV and Contamination
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Looks like in this case first one side has to "win" and then there will be a consensus. But our side is starting to look like an all-star team...
Ranciello Virology blog makes a retraction:
XMRV and CFS Its not the end
Vincent Racaniello retracts his comment to the Chicago Tribune that These four [Retroviology] papers are probably the beginning of the end of XMRV and CFS. Wow, big man.
Essentially he's changed his mind, more or less as explained yesterday in his blog that has been quoted elsewhere in this thread. Perhpas the most interesting new thing he says is this:
I don't quite understand how differences within the 22Rv1 cell line viruses could arise during PCR amplification but obviously this is important as the phylogeny results were the killer finding in the Retroviology papers.
XMRV and CFS Its not the end
Vincent Racaniello retracts his comment to the Chicago Tribune that These four [Retroviology] papers are probably the beginning of the end of XMRV and CFS. Wow, big man.
Essentially he's changed his mind, more or less as explained yesterday in his blog that has been quoted elsewhere in this thread. Perhpas the most interesting new thing he says is this:
I don't quite understand how differences within the 22Rv1 cell line viruses could arise during PCR amplification but obviously this is important as the phylogeny results were the killer finding in the Retroviology papers.
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Let's keep in mind that science only helps us when it's correct. If XMRV is a lab artifact or if it's a bystander in the disease we need to know that. Whether or not research gets directed to us is a political issue and has be treated as such; what molecules are involved is not.
We should support WPI because they are doing all the can for us, not because they're infallible. If XMRV turns out to be a subtle contaminant it has fooled some very able and qualified people and some science will be learned along the way. If not, fully exploring the issue is likely to yield spinoff knowledge - better lab procedures, more attention as to what the X, M, R and U -LVs are and research into what they do.
The most important thing is that research gets interested in why there is a cluster of people with PEM, POTS, neurological abnormalities, mitochondria shutting down and perhaps a higher incidence of cancerous and benign tumors. In other words we need to get unforgotten.
We should support WPI because they are doing all the can for us, not because they're infallible. If XMRV turns out to be a subtle contaminant it has fooled some very able and qualified people and some science will be learned along the way. If not, fully exploring the issue is likely to yield spinoff knowledge - better lab procedures, more attention as to what the X, M, R and U -LVs are and research into what they do.
The most important thing is that research gets interested in why there is a cluster of people with PEM, POTS, neurological abnormalities, mitochondria shutting down and perhaps a higher incidence of cancerous and benign tumors. In other words we need to get unforgotten.
Absolutely agree to all of the above. And all this kerfuffle also serves as a reminder that a wide diversity of biomedical research needs to be supported and funded - not solely the hunt for XMRV/MLVs, or only the work of WPI. We still need other biomarkers and to understand their meaning. We need more in-depth investigation of the abnormalities in exercise physiology that are seen in ME/CFS. We need solid studies on which medications help best with our symptom complex(es). We need a really rigorous overhaul of the various vague disease definitions that float around and confound data on ME/CFS by allowing patients with other kinds of unexplained "fatigue" to be included in studies.
We need all those things whether or not XMRV pans out. If XMRV doesn't pan out, we will still have a more solid body of evidence to guide treatment and continue investigations. If XMRV does turn out to be the culprit, then we still need the understanding and benefits that we would derive from the other lines of research.
And who knows what spin-off benefits there would be for other diseases and conditions? Don't you think this unique phenomenon of PEM could lead to interesting new discoveries about the way the body works and uses energy? We are interesting people! Scientists from all kinds of disciplines should be lining up for the chance to study us!
We need all those things whether or not XMRV pans out. If XMRV doesn't pan out, we will still have a more solid body of evidence to guide treatment and continue investigations. If XMRV does turn out to be the culprit, then we still need the understanding and benefits that we would derive from the other lines of research.
And who knows what spin-off benefits there would be for other diseases and conditions? Don't you think this unique phenomenon of PEM could lead to interesting new discoveries about the way the body works and uses energy? We are interesting people! Scientists from all kinds of disciplines should be lining up for the chance to study us!
Absolutely agree!!!! The work of the Lights, Broderick (with his new $4 million), the Pacific Fatigue Lab, and others all needs to be supported. I also think that one good thing coming out of the extended controversy is recognition by a broad group of researchers that the definition(s) are a real problem that confounds the data. That recognition is the first step to fixing it.
Yes, of course. I was not saying that i want "our side" to win if they're not right.
What i meant was that i feel that here the two sides are not cooperating but are entrenched and convinced they are right. It seems to be about egos and personal issues as well and maybe other motivations i don't know about.
So i feel like here consensus will not come from the two sides working together, but it will come when one side is eventually proven wrong by the other. It will be a hard blow for some people on the losing side. Had they cooperated and shared their knowledge from the start (there seemed to have been efforts to achieve that), we might have progressed faster and this story would not produce the casualties it probably will.
Having people on our side that i believe are very capable and trustworthy reassures me that i don't have to worry we will be declared "wrong" if we in reality are not and that such nonsense moves/low blows like the press release by the Wellcome Trust/UCL people that drive us nuts and misinform the public will be harder and harder to do and eventually become impossible when there is enough evidence, plus it indicates that the odds are pretty good our side is right.
What i meant was that i feel that here the two sides are not cooperating but are entrenched and convinced they are right. It seems to be about egos and personal issues as well and maybe other motivations i don't know about.
So i feel like here consensus will not come from the two sides working together, but it will come when one side is eventually proven wrong by the other. It will be a hard blow for some people on the losing side. Had they cooperated and shared their knowledge from the start (there seemed to have been efforts to achieve that), we might have progressed faster and this story would not produce the casualties it probably will.
Having people on our side that i believe are very capable and trustworthy reassures me that i don't have to worry we will be declared "wrong" if we in reality are not and that such nonsense moves/low blows like the press release by the Wellcome Trust/UCL people that drive us nuts and misinform the public will be harder and harder to do and eventually become impossible when there is enough evidence, plus it indicates that the odds are pretty good our side is right.
And also i'm just f*in p*ed
They decided to act like *s from the start so let them go down
I'll have a beer (non alcoholic, lol) and watch.
"Illness beliefs", "no XMRV in the UK", "XMRV not a human pathogen", "XMRV not the cause of CFS" and that's just a small sample...
At some point it's enough. You do bs non stop, you will hopefully be exposed for what you are.
I don't mind science and as i've said many times, i want them to work freely and share whatever they find. And i'll accept it once it is convincing enough. For example i don't criticize the Japanese and the Huber study published in that edition of Retrovirology, but some of what we see is not science, it is PR or stupidity or worse. You can't jump to conclusions like that. Look at how other "skeptics" like Dr. Coffin or Dr. Racaniello act. I don't have the slightest problem with that, i even admire Dr. Racaniello's honesty and integrity. This is the way to go. Be cautious, curious, thorough, objective, honest. That's how i would like scientists to work.
By the way it's 2:20 am here...
They decided to act like *s from the start so let them go down
I'll have a beer (non alcoholic, lol) and watch."Illness beliefs", "no XMRV in the UK", "XMRV not a human pathogen", "XMRV not the cause of CFS" and that's just a small sample...
At some point it's enough. You do bs non stop, you will hopefully be exposed for what you are.
I don't mind science and as i've said many times, i want them to work freely and share whatever they find. And i'll accept it once it is convincing enough. For example i don't criticize the Japanese and the Huber study published in that edition of Retrovirology, but some of what we see is not science, it is PR or stupidity or worse. You can't jump to conclusions like that. Look at how other "skeptics" like Dr. Coffin or Dr. Racaniello act. I don't have the slightest problem with that, i even admire Dr. Racaniello's honesty and integrity. This is the way to go. Be cautious, curious, thorough, objective, honest. That's how i would like scientists to work.
By the way it's 2:20 am here...
"Eureka, I have found a new piece of the puzzle, it must be important!"
Hi Marco, it is important to realize that while the observations made in any paper (barring error) are probably correct, it does not follow that their conclusions are correct. Conclusions vary widely in quality. Most conclusions are just models and implications: informed speculation. Unless I think there is an error, I rarely challenge the data. In the case of bad experimental design (e.g. psychobabble) then I challenge the relevance of the data. The conclusions are always open to challenge.
When someone draws conclusions, especially in the early days of research into a topic, they have usually just discovered a few pieces in an extremely large jigsaw puzzle. Some tend to over-emphasize their few pieces, others are more cautious. None of them can see the whole puzzle, they are projecting what they think it will be. This is informed speculation - an educated guess. Many factors go into that guess, including how many other pieces of the puzzle they really understand. Also factored in are intellectual biases (look at the biopsychosocial movement and their biases).
So most conclusions are a few very smart people, with a few of the pieces of the puzzle, and their own most important pieces, who then guess on what the picture in the puzzle really is.
There is one important caveat to this commentary. It is much easier to disprove things than prove them. Its one reason why we have controls in experiments. If something is wrong with the experimental hypothesis or the experimental methods, comparison with a control group helps us figure this out. It is also why we have peer review prior to publication, and open critical analysis in the scientific community. Everything can be challenged. If enough try to challenge the research, and fail, we tend to think the experimental analysis was correct. But wait, there is error too. The best form of rebuttal is to demonstrate, in an unambiguous way, that the original research made a mistake. (It is nearly always an unintentional mistake.)
So the contamination argument is basically that someone found an error somewhere. It might be relevant. Therefore, the more extreme proponents claim, it must be true everywhere. Say what ...???????????????!!!!!! They have to prove the error was in the original research. They haven't come close to doing that!
I think it was Benjamin Franklin who said: "Our critics are our friends". The WPI paper was very much stronger because they were challenged by reviewers prior to publication. If things proceed according to science, not politics, then all this criticism will lead to stronger and stronger scientific evidence until the challengers all go quiet because they will look ridiculous if they keep challenging it - unless of course the challengers were right.
So remember: the critics are our friends. What is the correct explanation?: its already out there. We just need to see enough of the puzzle to figure out what it is.
Bye
Alex
Hi Marco, it is important to realize that while the observations made in any paper (barring error) are probably correct, it does not follow that their conclusions are correct. Conclusions vary widely in quality. Most conclusions are just models and implications: informed speculation. Unless I think there is an error, I rarely challenge the data. In the case of bad experimental design (e.g. psychobabble) then I challenge the relevance of the data. The conclusions are always open to challenge.
When someone draws conclusions, especially in the early days of research into a topic, they have usually just discovered a few pieces in an extremely large jigsaw puzzle. Some tend to over-emphasize their few pieces, others are more cautious. None of them can see the whole puzzle, they are projecting what they think it will be. This is informed speculation - an educated guess. Many factors go into that guess, including how many other pieces of the puzzle they really understand. Also factored in are intellectual biases (look at the biopsychosocial movement and their biases).
So most conclusions are a few very smart people, with a few of the pieces of the puzzle, and their own most important pieces, who then guess on what the picture in the puzzle really is.
There is one important caveat to this commentary. It is much easier to disprove things than prove them. Its one reason why we have controls in experiments. If something is wrong with the experimental hypothesis or the experimental methods, comparison with a control group helps us figure this out. It is also why we have peer review prior to publication, and open critical analysis in the scientific community. Everything can be challenged. If enough try to challenge the research, and fail, we tend to think the experimental analysis was correct. But wait, there is error too. The best form of rebuttal is to demonstrate, in an unambiguous way, that the original research made a mistake. (It is nearly always an unintentional mistake.)
So the contamination argument is basically that someone found an error somewhere. It might be relevant. Therefore, the more extreme proponents claim, it must be true everywhere. Say what ...???????????????!!!!!! They have to prove the error was in the original research. They haven't come close to doing that!
I think it was Benjamin Franklin who said: "Our critics are our friends". The WPI paper was very much stronger because they were challenged by reviewers prior to publication. If things proceed according to science, not politics, then all this criticism will lead to stronger and stronger scientific evidence until the challengers all go quiet because they will look ridiculous if they keep challenging it - unless of course the challengers were right.
So remember: the critics are our friends. What is the correct explanation?: its already out there. We just need to see enough of the puzzle to figure out what it is.
Bye
Alex
Retrovirology is very clearly NOT our friend. To have tagged these articles with 'CFS', but not the obvious 'prostate cancer' indicates that they want searchers on 'CFS' to find this info, but don't care if people wanting info on 'prostate cancer' find it. Don't they want prostate cancer researchers to know about the possible pitfalls in detecting XMRV?
A 'themed' journal without balance is very bad practice. I can't imagine that serious scientists receiving this journal don't know that. It's hard to have much respect for Retrovirology as a scientific journal.
There's been a lot of heartache and fear over the publication of these papers. There's a certain amount of amusement to be had from speculation and discussion when these "negative" studies. I enjoy them (under certain circumstances) as much as the next person. I'm all for spirited scientific debate; however, I know that for many these publication events are traumatic.
For those among us for whom these publications only result in unhealthy emotional rollercoastering, I have what I hope is a helpful suggestion.
If you want to stay off the emotional rollercoaster, take anything not published in one of the top 5 or 10 scientific journals with a grain of salt. The media may take it seriously and hype the conclusions, but WE don't have to worry. Yes, we may need to deal with the media, but don't worry about the science. You may choose to take and interest in the papers, but don't worry.
The best, most reliable, long-enduring research is published in the best journals and takes a long time to go through the process. This is because it is rigorously reviewed by responsible reviewers who want to make sure that all the i's are dotted, the t's are crossed, and no irresponsible and/or unjustified conclusions are drawn. That's why we waited and waited and waited for the Alter/Lo paper. Papers that are rushed from submission to publication (such as the recent 4 papers) are simply not as scientifically reliable.
Some good science is published in lesser journals, but so is bad science. The critical factor is the quality of the review. The best journals publish great science. Wait for that before you commit your emotions and save yourself from the emotional rollercoaster.
Don't they want prostate cancer researchers to know about the possible pitfalls in detecting XMRV?A 'themed' journal without balance is very bad practice. I can't imagine that serious scientists receiving this journal don't know that. It's hard to have much respect for Retrovirology as a scientific journal.
There's been a lot of heartache and fear over the publication of these papers. There's a certain amount of amusement to be had from speculation and discussion when these "negative" studies. I enjoy them (under certain circumstances) as much as the next person. I'm all for spirited scientific debate; however, I know that for many these publication events are traumatic.
For those among us for whom these publications only result in unhealthy emotional rollercoastering, I have what I hope is a helpful suggestion.
If you want to stay off the emotional rollercoaster, take anything not published in one of the top 5 or 10 scientific journals with a grain of salt. The media may take it seriously and hype the conclusions, but WE don't have to worry. Yes, we may need to deal with the media, but don't worry about the science. You may choose to take and interest in the papers, but don't worry.
The best, most reliable, long-enduring research is published in the best journals and takes a long time to go through the process. This is because it is rigorously reviewed by responsible reviewers who want to make sure that all the i's are dotted, the t's are crossed, and no irresponsible and/or unjustified conclusions are drawn. That's why we waited and waited and waited for the Alter/Lo paper. Papers that are rushed from submission to publication (such as the recent 4 papers) are simply not as scientifically reliable.
Some good science is published in lesser journals, but so is bad science. The critical factor is the quality of the review. The best journals publish great science. Wait for that before you commit your emotions and save yourself from the emotional rollercoaster.
My god this is a complex field! So the differences in 22Rv1 - which appeared to make it so much more variable than XMRV -and thus ancestral to it - might have occurred during PCR amplification...Wow Turn your head away and you never know what's going to show up.
Hue's was the big finding for me....but now there is doubt.....
Hue's was the big finding for me....but now there is doubt.....
That's great news. He's an accomplished mouse retrovirologist from a great facility and anything he does will be well respected. The fact that he's jumping in now is very promising.....
It's a WAR!!! Silly brits, don't you know Americans always win?:mask:
The Yanks are coming, the Yanks are coming...
In a fight against Americans, these red coats will all fall like toy soldiers. General tells Magua, "I want Weasel's scalp!"
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And also i'm just f*in p*ed
They decided to act like *s from the start so let them go down I'll have a beer (non alcoholic, lol) and watch.
"Illness beliefs", "no XMRV in the UK", "XMRV not a human pathogen", "XMRV not the cause of CFS" and that's just a small sample...
At some point it's enough. You do bs non stop, you will hopefully be exposed for what you are.
I don't mind science and as i've said many times, i want them to work freely and share whatever they find. And i'll accept it once it is convincing enough. For example i don't criticize the Japanese and the Huber study published in that edition of Retrovirology, but some of what we see is not science, it is PR or stupidity or worse. You can't jump to conclusions like that. Look at how other "skeptics" like Dr. Coffin or Dr. Racaniello act. I don't have the slightest problem with that, i even admire Dr. Racaniello's honesty and integrity. This is the way to go. Be cautious, curious, thorough, objective, honest. That's how i would like scientists to work.
By the way it's 2:20 am here...
They decided to act like *s from the start so let them go down
I'll have a beer (non alcoholic, lol) and watch."Illness beliefs", "no XMRV in the UK", "XMRV not a human pathogen", "XMRV not the cause of CFS" and that's just a small sample...
At some point it's enough. You do bs non stop, you will hopefully be exposed for what you are.
I don't mind science and as i've said many times, i want them to work freely and share whatever they find. And i'll accept it once it is convincing enough. For example i don't criticize the Japanese and the Huber study published in that edition of Retrovirology, but some of what we see is not science, it is PR or stupidity or worse. You can't jump to conclusions like that. Look at how other "skeptics" like Dr. Coffin or Dr. Racaniello act. I don't have the slightest problem with that, i even admire Dr. Racaniello's honesty and integrity. This is the way to go. Be cautious, curious, thorough, objective, honest. That's how i would like scientists to work.
By the way it's 2:20 am here...
Its not the science (one wonders about that too on ocassion though) its the motives, the conclusions, and the way its fed to the media, that subtley is obviously a biased agenda, cut the opinonaited biased agenda, and the science is fine.
Some here seem somewhat lost on that point. Others are really starting to see how bad it really is in the uk.
I support Prof De Meileirs statements, in effect of the neglect, the biased motives, and feeding exgerated conclutions to the press, to win a argument, the goverment neglect,and insurance connections to mental health proffesionals,its imoral its a conflict of interests.
its a crime against sick humans pure and simple. Dangrouse for a man in hes position to say it, but true none the less.
I applaud hes courage for speaking out finally.
The greatest respect the uk coroner could do for poor sophia Mirza was put her cause of death on her medical certificate as ME after she was forced into a mental hospital, and died not long after, thats not a crime against a human being is it not Prof De meilers only mistake was to not clarify hes statment more ? but i suspect strongly because he was also talking about goverment and insurance ties with mental health proffesionals that hes statement probably refelcted all of this, not just the 4 papers.
Some are still Blind. More worried about PR damage than justice it seems, so wrong, I cant help but to let my emotions rule my head, they are often less clouded by calculations of risk im afraid And its a diservice to condem those who speak out about all these issues, that can, and did, and will probably do again lead to this happening again
These comments are directed at those who say Prof De Meileir is wrong to stand up to this abuse of power, I will stop when others do.
http://www.sophiaandme.org.uk/
Just like the retraction we all so applaud by Prof Racaniello. I wonder if we can admit to ourselves that we also fail poor Sophia by condeming Prof De Meilier for having the courage to speak up about issues that will lead to this happening again.