Discussion in 'XMRV Research and Replication Studies' started by Countrygirl, May 31, 2011.
Willow trying to find a 'like' button for your post
"Science" often has it's head up its ass, as many issues have shown over the years
Far, far too often, it has had to be bludgeoned into numbskulls that their cherished beliefs are wrong, usually after many good folks' careers have been blighted by daring to speak out.
The Scientific Method is good, slow, but good.
Problem is that it's all really about people, and there's the rub.
The more money and power are involved, the more corrupt, stupid and dogmatic it gets in any Human sphere, including science.
We also have to understand that this stuff is extremely complex. The insufferable arrogance that exists over a mere few decades of knowledge and tools to comprehend these problems is absurd!
Want to know something REALLY scary? Every single fact we know about anything, maybe wrong. If you can't deal with that fact, you ain't in the Kansas Science Faire no more, Toto!
nice, thank you
This is a very recent comment made by Alter when he was asked about the 2 recent Science studies:
That is a long list of differences, for sure - much longer than I would have expected. Good for the WPI for laying out exactly where they feel the problems are. I am going to try and get a response from somebody in the field.
Great illustration, Willow.
Good idea. Be interesting if the Levy study
was now added to this comparison chart.
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peterson's study is taking place at columbia in NYC..isnt that where lipkin is, too?
montoya and peterson are both doing some high-tech pathogen-finding. wonder what will come of it. i can't imagine that they will be trying to find xmrv!
as long as they are trying to find answers--which I'm certain they are--that's good.
also as long as someone is finishing studying xmrv, which is happening at least with the BWG
Wonder no more! Simply go back to Sept 2009 and look at the progression of XMRV.
Or if you are really brave - go back 20 years plus, to 1988 and consider the 3,000 plus pieces of existing research in CFS.
That should give you some clues on what is likely to come of it.
Sorry, not a happy post. With recent developments, Coffin, Levy, Science requests for voluntary retraction, CDC/NIH not allocating any real funds towards CFS (and in light of these developments that they probably knew were coming - that was all the justification they needed) I am not feeling very hopeful.
Research and science - at this juncture - have and continue to fail us
One day, whatever the causative effect is of ME/CFS, there will either be an horrific epidemic (if infectious), or local catastrophy (if complex triggering of some undelrying issue and then another factor is introduced, be it contaminated vaccine, chemical or whatever the hell)
Since the "collective finger has ben shoved up the collective bunghole" about this illness and work upon it, when this inevitable outbreak (or worse) occurs, say another hospital or town outbreak, hundreds or thousands of follk will suffer and die, needlessly, because of a bunch of assholes and collective arrogance and stupidity have deliberately blocked work on this issue and will be directly repsonsible for such, and it is an atrocity.
And since many folk now won't come forward with this kind of illness for fear of ridicule, or are denied proper hearing by bigotted clinicians...well, you have the recipes for a "Titanic" class disaster, oh, make that "Tuskegee" or maybe "SARS".
After seeing the gross bungling, at best, of the PACE trial, there is ample reason to have gross distrust of any negative studies on any ME/CFS related issue. Science (the field of Human endeavour not the magazine) itself has been compromised on this entire issue.
The discrepancies between not finding any XMRV not even in controls, throws many studies into doubt, OR the ones who claim contamination have a hard time explaining the huge differences between controls and ME/CFS patients OR epxlaining how some labs do or do not have these issues.
And this, today on the BBC is a cracker:
oh great, so he's a prophet is he, now, that he can be 100% sure about such? wowzers, hip hip hurray, Jesus and absolute certainty have returned!
In that case hey lets all go donate blood as we know we cannot be infectious...any takers for our blood, hm?
I think we must gradually change the situation so that it will more be OUR science that gets done. The WPI is "ours" too, in a way, because it was founded by a familiy affected with ME/CFS, but that's an exception.
It's others than us that have the initiative and they have their own views and motives that are not necessarily the same as ours.
It's our lives and our future and so we should try to get more influence, more control. This requires we organize more and better. The community of patients must become a stronger player in this story. So far we have mostly been observers, that can only react to what others do. But they do what they want to do, wheter we like it or not. Everybody has his own interests, we must make sure it's ours that determine more where things go.
We must flood into the organisations. What percentage of people with ME/CFS are members of an organisation now? 5%? Imagine what power we would have if that was 80%.
I have the same impression. I dont know maybe someone will say that its crazy to wish to have a retrovirus but I think only if we will know the cause of our sickness we have a chance for a treatement. Thats why I hoped that they will confirm xmrv. now, with this amount of research money, we will wait another 20 years for a possible cause. We already know that something really nesty is in our body - and in my unscientic opinion its doesnt matter if its xmrv or something else - we just need to know the cause to move.
You really should try doing some research before making such outlandish and uninformed statements...
The dam is going to break some time...
I like Redruth's posts as they show why so few CFS family members who could help, do help. Denial and a wilful ignorance.
My experience has been that families with scientists and medics turn their backs on patients. They refuse to read the histories, engage or even understand the processes. Why do they do this?
I remember when I tried to explain to a researcher once how the UK MRC kept refusing grants for biomedical research. He kept saying "but it can't be like that" over and over again. I came up with quotes from Dr Vance Spence and Dr Kerr and it was still like - "well you must have made them up or these doctors must be mistaken".
A professional bias and professional denial.
(well, it simply cannot be as you describe...., no I have no evidence...., I'm not going to look at it ...... etc etc).
This is exactly what the situation is like. We need family members who are scientists, doctors and researchers to be able to look at the situation and analyse it rationally. Not the defencive knee-jerk reaction. Any ignorant family members must be made to read "and the band played on" and understand HIV/AIDS research.
Redruth will find all of her arguments already thought of and covered on other threads. We patients want the truth and we are willing to look at the worst side of the argument. We will research, argue the points to get to the truth because we want to be better/well.
No wonder so many patients feel suspicious about the professions that should be helping us. After all many ME patients have high IQ's, are as well or better educated than doctors, researchers, biologists and scientists and can still read the evidence. It's not hard. It's just hard work for minds that we not what they were. If I read a medical paper I may need to ask for help. I find it from the hordes of ME patients who were educated and specialised in that topic. I also find help from friends and acquaintances who are interested. I email researchers on both sides of the debate. We didn't lose our brains, curiosity or degrees when we became ill.
For some of us, retrovirology is simply not that hard. There are disagreements of course, lack of science, big holes to think around. That doesn't make it impossible. We still have training and minds.
Yet, we are portrayed as consistently wrong by people (like RedRuth) who haven't even read the history, have no idea what has happened and probably won't stick around to find out that they are wrong.
If it was my sister that was sick with CFS, and there was a possibility it was being caused by a retrovirus then I would be bothered to spend the time to examine the arguments.
I think your observations are sadly true. I think facts that compel a paradigm shift are often rejected most strongly .....and finding out that the world isn't really flat can be extremely confronting. You can only hope and pray that such people have greater compassion for the reports of suffering associated with the illness sufficient to investigate further......than they have in an investment of being right.
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