Phylogenetic analysis of MLV sequences from longitudinally sampled Chronic Fatigue Sy

[free at last]

Hi, RedRuth. I agree with eric's posts.

I was wondering, do you have some alternate explanation for why Towers would be telling the media things that went so far beyond the appropriate conclusions of the studies?

I would rather not believe in conspiracy theories. On the other hand, experience has taught me that there are indeed a few scientists (the (bio)psychosocial school which discounts any and all biomedical evidence) who cannot be trusted in any case. This is the minority of scientists, but unfortunately it tends to be a very powerful minority. (it's not exactly a secret society, though, so it doesn't formally qualify as a conspiracy)

Importantly, this group of untrustworthy scientists does not automatically include any scientist with a negative XMRV finding; I still trust Singh, for example.

This is exactly what Redruth fails to grasp time after time. very well put Willow. By suggesting everything is not all right in the medical world, we get accused of mistrusting everybody.

Thats not the case at all. But something else that im sure many on here fail to grasp, is your other point.

Being the powerful minority. They do influence many scientific researchers, whos ultimate aim tends to be, lets see if i can disprove a connection. not verify it.

I know some like sing do not appear to fall into this camp, but sorry Red ruth Towers may well do, as did mclure, and probably a whole army just waiting in the wings. But im a conspiracy nut that can not be true can it. ahh but it is

influenced no doubt by the teachings of sharp wessley and white and others. it really does become a domino effect.

Thats not to say there science is wrong, or they have been paid to skew results or any such nonsense. But from the outset they will hold blinkered veiws and there science may well go in directions that reflect that view point,

its not conspiracy. its bias.

So many fail to grasp these simple points that im often led to belive such individuals who blast those, that blast the biased scientists, are actually a big a part of the problem of the biased scientists they are defending.

yet all we keep hearing is, im saddened ME/CFS patiants belive there is a conspiracy in the scientific world.

its just another attempt to make us all look nuts.

so its not that they dont grasp what we are saying. They try there best to avoid that discussion, and divert the attention. By accusations of conspiracy nutters.

very good game plan just so obviouse now, dont bother to keep trying please, its not working, and we can all see straight through attempts to paint us all in this way period

 

[Esther12]

This is exactly what Redruth fails to grasp time after time. very well put Willow. By suggesting everything is not all right in the medical world, we get accused of mistrusting everybody.

Thats not the case at all. But something else that im sure many on here fail to grasp, is your other point.

Being the powerful minority. They do influence many scientific researchers, whos ultimate aim tends to be, lets see if i can disprove a connection. not verify it.

I think that with virology, and XMRV in particular, there's far less room for bias and prejudice to distort the scientific process than there is with the psychosocial approach to CFS.

It may well be that some XMRV researcher will approach CFS with certain distortions of thought, and this will affect their work and interpretation of results, but because the science of virology leads to a far greater degree of objectivity than is possible with a lot of psychological research, these problems will soon resolve themselves. To me, it does seem that the different ways in which some speak of the link between XMRV and CFS and prostate cancer is a result of their own emotional prejudices... but if the WPI are able to accurately detect CFS smaples with Lipkin and the WPI, it won't matter. Equally, it does seem to me that some pro-XMRV researchers are rather emotionally involved, and too committed to the notion that XMRV is related to CFS... this won't matter if they can't distinguish between CFS and control samples under blinded conditions.

I think that the poor history of how CFS has been treated in the past, and the fact that Wessely was involved with the first negative XMRV paper, has meant that we've focused on the individual personalities/beliefs of those involved more than is necessary. It's still fair to criticise Towers for over-selling his results, but I don't think we need to be as worried about the long-term impact of those distortions as we do with, for example, the misrepresentations that surrounded the PACE trial.

 

[free at last]

I think that with virology, and XMRV in particular, there's far less room for bias and prejudice to distort the scientific process than there is with the psychosocial approach to CFS.

It may well be that some XMRV researcher will approach CFS with certain distortions of thought, and this will affect their work and interpretation of results, but because the science of virology leads to a far greater degree of objectivity than is possible with a lot of psychological research, these problems will soon resolve themselves. To me, it does seem that the different ways in which some speak of the link between XMRV and CFS and prostate cancer is a result of their own emotional prejudices... but if the WPI are able to accurately detect CFS smaples with Lipkin and the WPI, it won't matter. Equally, it does seem to me that some pro-XMRV researchers are rather emotionally involved, and too committed to the notion that XMRV is related to CFS... this won't matter if they can't distinguish between CFS and control samples under blinded conditions.

I think that the poor history of how CFS has been treated in the past, and the fact that Wessely was involved with the first negative XMRV paper, has meant that we've focused on the individual personalities/beliefs of those involved more than is necessary. It's still fair to criticise Towers for over-selling his results, but I don't think we need to be as worried about the long-term impact of those distortions as we do with, for example, the misrepresentations that surrounded the PACE trial.

I understand what your saying, and to a degree your right Esther, but that doesnt mean, that researchers scientists, might take there research in directions attempting to prove a negative, just like the wpi are trying to prove a positive, and when i say a negative. I mean do research that shows its not connected with CFS/ME or is more likely contamination. if enough scientists think like this. then im not sure what your saying is actually true, Mclures study and the early Dutch study are examples of poor patient selection and possibly virology, however much they protest thats not the case. i understand there has to be a balance between those that are trying to prove a connection, and those that are trying to prove its a non starter. the only problem is, after a while i get the feeling, the non starter camp is taking over, so from that perspective, other than the BWG and lipkin. It is indeed extremly worrying. But i agree the BWG and lipkin should settle this. but untill then im worried. How much longer i wonder before the BWG reults are released

 

[currer]

This comes courtesy of the other forum, from an article by John Coffin.
"Structure, Replication, and Recombination of Retrovirus genomes: Some Unifying Hypotheses" 1979.

(Regarding recombination) ...."a typical experiment is to infect a culture of cells with two genetically different viruses and harvest and examine the progeny with some selective system after a few replication cycles. Although determination of precise recombination frequencies is impossible in such a system, as much as 40% of the progeny of the original cross can be found as recombinants....."

"The genomes are the products of intermolecular recombination events since all contain nucleotide sequences derived from each parent and also lack sequences from each parent"
"Unselected crossovers are very frequent....As a result there is no detectable physical linkage. The result of this high frequency can be seen to randomise the parentage of of all unselected regions...."
"There are no obvious hotspots for recombination in which crossovers occur more frequently..."

"FOR THESE REASONS IT IS HIGHLY IMPROBABLE THAT STANDARD GENETIC OR LINKAGE MAPS CAN BE DEVELOPED FOR RNA TUMOR VIRUSES......"

This suggests to me that the recent Towers paper claims greater certainty for its conclusions than is warranted.

 

[Esther12]

Unless you know the topic really well, I wouldn't cite a paper someone made in 1979 to contradict a claim they made in 2011. I expect that a lot has changed since then.

But i agree the BWG and lipkin should settle this. but untill then im worried. How much longer i wonder before the BWG reults are released

You knew what I meant even though I slipped and wrote 'WPI' instead of 'BWG'! Personally, I've not been worried since the Alter paper came out. I think that meant this issue was going to be dealt with seriously, and was not going to be brushed under the carpet (of which there was a slight possibility when it was just one paper indicating some link between MRVs and CFS). The Lipkin study looks about as thorough as we could hope for, and along with the BWG's work, I'm pretty confident that we will get to the bottom of XMRV/CFS.

 

[WillowJ]

I don't think it's fair to question RedRuth's motives. She is new to this and doesn't understand yet.

The conclusions we have come to (i.e. there are a few prejudiced scientists out there) were arrived at by experience, our own bad treatment, and living in the ME community. RedRuth either needs to find this out for herself over time, or take advantage of our collective knowledge, but she shouldn't be criticized as if she had bad motives, simply for being new.

It's very difficult to understand that the world is unjust and that this affects the scientific community, too. Scientists are not magically immune from the failings of human nature, as much as we would like them to be. Our modern world holds science, scientists, and the scientific process up on a pedestal. This is an inaccurate view, but it takes specific kinds of experience to understand the inaccuracy.

 

[currer]

I agree the papers old, but the data on recombination is still good. Without the entire Towers paper it is hard to say anything, but the Coffin paper shows that retroviruses recombine all the time. As I understand it the Towers paper did not place enough weight on recombination.

There is not much that can be said, really without the whole paper.

 

[free at last]

I don't think it's fair to question RedRuth's motives. She is new to this and doesn't understand yet.

The conclusions we have come to (i.e. there are a few prejudiced scientists out there) were arrived at by experience, our own bad treatment, and living in the ME community. RedRuth either needs to find this out for herself over time, or take advantage of our collective knowledge, but she shouldn't be criticized as if she had bad motives, simply for being new.

It's very difficult to understand that the world is unjust and that this affects the scientific community, too. Scientists are not magically immune from the failings of human nature, as much as we would like them to be. Our modern world holds science, scientists, and the scientific process up on a pedestal. This is an inaccurate view, but it takes specific kinds of experience to understand the inaccuracy.

All true to a degree, but meanwhile people are still dying or being disabled from a disease that is likely cureable with our current technology. its only those human failings that are preventing this. i cant stick up for some that fail to see this, just because it hasnt happened to them, thats rubbish.

Sophia Mirzas website is the only education people like Red ruth need to learn about to see the trees for the woods,

not a lifetime of neglect and illness.

i politely dissagree.

Malcom Hooper is a acedemic of the highest pedigree. if a different field. But he knows the injustice thats going on. he didnt need to be ill or be treated in this way to fully get the picture. no its just making excuses. for those that cling to the world view that for the most part everything is hunky dory in the world of medicine and science. when clearly it is not. or sophia would likely still be with us. Sorry for feeling that way. but i just cant feel for apathy and distortion anymore i just cant. We need more like Malcolm Hooper. not Red ruth. or at least a Red ruth that finally gets a heart, and finally gets the injustice
untill then she would likely go on to be the very obstacle that we are talking about, Eric asked her on numerouse occassions help us with your knowledge
Instead she wanted to defend her preciouse scientific world. in debate, and when she finally realizes the casulaties are human beings she runs away because of conciouse

 

[WillowJ]

and I completely agree that she needs to understand the bias that exists, preferably sooner rather than later. I just want us to help her do that by way of reason and examples, not by criticizing her person and motives.

 

[Firestormm]

Post it up for us firestormm, and we'll debate it.

Currer you have probably seen this on the other forum - maybe not? Anyway, it will take me a while to format the thing - it was pdf. pre-publication but I can't attach a pdf. file from its' source.

I will try and format it in Word and then post it later - then perhaps someone can help me to understand the actual methodology, if not the conclusions.

 

[currer]

I think free at lasts analysis is pretty accurate, actually.

I regret that she did not help us more with her knowledge. We could not have a free discussion here, all our time was taken up defending ourselves. And there is a limit to the amount of background political information one can type in. Typing takes a lot of energy! She did not take much notice of that anyway.

 

[free at last]

and I completely agree that she needs to wake up to reality, preferably sooner rather than later. I just want us to help her do that by way of reason and examples, not by criticizing her person and motives.

I do agree with you there, and maybe im wrong to be so forceful, but you know Eric was trying and it seemed to me she wasnt that interested.

the more i read things she had to say, the more aware i become that she wasnt what she claimed i dont think ? of course i could be wrong, and i apologize if i am but She claimed a interest because of her family. Well the Patient advocate, had a interest for similar reasons, what a world apart. i saw no interest in finding solutions for her family member. i think that was rubbish. I think she entered this forum, because she didnt like patients attacking her beloved science world view. and wanted to debate that, to make us see the world through her eyes. well sorry many on here has a need greater than her. and if that was her intention which i think it was, then i wanted her to see the world through our eyes. If im wrong about my assumptions, then yes maybe the hurt and disgust just goes too deep, but if im not, then i belive its the correct way to highlight whats wrong with this whole tug of war denial that i see on here and elsewhere. I hope im not wrong, but its a gut feeling. sorry if i am

 

[Deatheye]

Seriously, why is this topic going into the direction of attacking RedRuth?

She's sharing here knowledge, she is doing this more in a professionall then a personell way. But what's so bad about this? I'm thankfull for the input she gives.
If something she says seem to contradict knowledge we gathered why not tell her in a nice way? She can't possible read everything that's ever been written in this forum, and noone seems to expect this from any other person.

It's understandable that we can't serve here every information. But at least if someone has anything to share like where this allready got disscussed or what she needs to search for, why not share this information with here like all seem to do with everyone else.

What she basically is against is the Idea of the big conspiracy. Which I'm too btw. (Maybe I change my mind if I ever can read the hole Oslers web)
But everything I saw, read and had my own personell experience could be logicaly explained cause of normal human behaviour, which turns out terrible for us personell, but still has nothing to do with consipracy.

I never felt like she is not interested in the hole stuff, but like any human that uses it's brain she actually doesn't just belief what anyone says. But at least for me she seems to open about disscusion, and shoudn't we be happy about some new knowledge? Someone that actually could turn out to be helpfull?
If you want to be more extrem: beeing happy about a possible new soldier to recriut? (Hope this one doesn't get cieted coud be taken wrong...)

For me it really feels like this is starting to grow into a which hunt against other people in an open place and for me this leaves a really bad taste...
Please at least do this in private chat and ask here there, but don't denounce here as a liar just cause you feel that way...

 

[free at last]

Like i said if im wrong then i apologize, but if im not, then i dont have much to apologize for. some new knowledge, the only knowledge i kept seeing was nothing to see here lets move along.

fine if she feels like that, but whats her interest here ? a family member mmmmm not sure ? hopefully we are all not being lied to. I saw little interest in finding real helpful solutions for such said family member. and more interest in protecting the integrity of scientists.

just ones that happen to hold the same view as her, it goes both ways i know but after a while it felt like we was the ones getting brainwashed. As i keep pointing out Eric asked her at least twice to use her knowledge more to help us, than to continually want to keep debating us, and our feelings of bias in science. notice i said bias, not conspiracy. it just became obviouse to me and possibly a couple of others that seemed her primary motive for being here. I hope im wrong and i cant stress enough if i am then im really sorry. but if im not. then its really not very helpful and just causes more despair and confusion in those that dont need anymore. if you didnt feel that fine, but i did, i wish i didnt. it isnt the only person i feel this sort of crap from either. But hey like minded people and all that. I might myself stop posting as really i get to bothered by subtle things that dont seem to bother others. for the most part i stay silent but occassionly i just cant help my big mouth. ill drop it now, hopefully someone wont say something that bothers me. or my lips will bleed as i bite them ever so hard, i do notice certain people seem to defend certain people, again that works both ways, i like to think my position is the kinder one, but hey maybe im just a conspiracy nut

 

[currer]

I dont think anyone is attacking Redruth.

It is fair and right to have a discussion about how we deal with posters who are not patients and whose experience and basic assumptions are very different from ours.

I spent a lot of time trying to stop the discussion threads from going in the direction Redruth posted because I felt that we needed to keep our discussions here free from the bias we see in the published papers. It would be naive to assume that there is not a powerful political dimension to our illness.

It is important that sufferers who come here for information on the science get a proper balance, and this cannot happen if you have an energetic and healthy poster using these threads to promote the view that the WPI are overwhelmed by contamination.

There are powerful forces who have no difficulty getting published promoting this view, but we need to maintain balance on these threads, for the sake of other sufferers.

It is hard for non scientists to remember all the developments in the science, and to relate these findings and adequately interpret and understand them.

We have to do this for each other here, and stay alert to politically motivated attempts to destroy the WPI's credibility. This does not mean that there are not scientific questions about XMRV still to be answered.
But we need to keep a political perspective on the direction the scientific debate has been artificially forced to follow.

This is something ME sufferers will usually understand, but a non sufferer may not.

I think we are right in keeping our threads open to outsiders, but we also need to protect our space too.

I am not suggesting that Redruth intended to harm us, I dont think she realised how vulnerable many people are here. Nor am I attacking her.

But I will be glad if we can get back to the freer and more open discussions we used to have here, without having the direction of the discussion continually pushed into a defence of the WPI.

As the person who spent the most time responding to Redruth, I just did not have the energy in the end to continually reiterate explanations and the history of this illness for her. Typing is tiring. I also felt she did not have much interest in learning this and I was wasting my (limited) energy.

There are other ideas I would like to explore on these threads with the people who come here. I have learnt a lot from coming to this forum. This freedom to explore and speculate stopped when Redruth came on.

I dont think she realised this so I'm not blaming her, but I was afraid of loosing a valuable resource here.

It is also perfectly fair to say that Redruth could have used her knowledge to help us. She made few attempts to do this. She just wanted to participate in a very simplistic argument. I dont think we have lost much.

Free at last made quite fair remarks, I thought.

 

[currer]

With regard to "conspiracy theories" I am aware that I have become much more open to this line of thinking.

I worked for fifteen years for a large ME support group in my country.
Some of the stories I heard were heart rending, in all of them the patients deserved better. We tried hard to improve peoples lives.

I thought then it was just a case of explaining to the medical authorities that people were really ill, then they would see the light and give us the care and medical support other illnesses get.

This did not happen and I started to ask myself why.
I have been ill for thirty years myself and seen a lot in that time.
I can see well meaning people in that group behaving as I did twenty years ago, thinking they just need to explain how bad this illness can be, and being led in the same circles I was sent round in.

If we cannot cut through the political manipulation that enmeshes us we will be led in these same circles forever.

Representations to the UK government are made all the time, long parliamentary reports have been written presenting powerful cases for the reality of this illness and the plight of sufferers.

Nothing changes.

The government knows they have a real illness here, one they choose to ignore.
They have been made well aware of how sick and desperate ME sufferers are.
It is not just an oversight.

It is quite acceptable to look for the reasons as to why this would be so and to try to understand the wider picture.
Like it or not, human societies are inevitably political.

 

[currer]

I dont think there is anything on this thread that need leave "a bad taste in the mouth"

I think we have dealt with this in a sensible and fair way and that is to our credit.
It is also to Redruths credit that she had second thoughts about her motive in being here and was honest enough to admit it.

 

[Firestormm]

I shoved the full text on a separate thread.

 

[currer]

It appears from a thread on the UK MEA newsboard that the peer review process for research applications for ME to the MRC is underway at the moment.

Could this be the reason for the current media onslaught on people with ME in Britain?
http://www.meassociation.org.uk/?p=7713

This is another example of the political background to this illness constantly overwhelming the medical and scientific issues.

 

[free at last]

Its funny how some people see eye to eye Currer, yet others are like different species trying to communicate. Must be life experiances i dont know.

But your right about the politics, even the wpi talk about politics a lot, as they are not immune to it and affected by it

So big is the elephant that chooses the easy way out, the cheaper way out. just because they can get away with it. Thats whats so threatening about the wpi. they got real close to disturbing the hierachy. And the expense, though its not just about money, its also about saving face, having to admit you was badly wrong. badly neglectfull. they will not concede this. with out a fight. and so it goes on. The only way to beat it, is evidence of the highest order. We must hope that evidence comes. or nothing will change, you can bank on it