New WPI and CDC XMRV sequences in genbank

[alex3619]

My Opinion on Conspiracies

So why do you still bother looking into this, if you think that some sort of conspiracy is going to keep all evidence for your thesis from ever being published?

There is a huge misconception, from my point of view, on all sides involving conspiracy. I am delving deeply into philosophy of science in regard to psychobabble, but a lot of it is still relevant to the XMRV debate. In practical terms research can be considered to come from competing communities of scientists, each with their own views.

Science is adversarial between such groups, and collaborative within.

So scientists in one group will present information and arguments to undermine the other group. That is their role. We might not like it if we are supporting the other group.

This is not a conspiracy, it is science as routinely practiced.

People who take upon themselves to pursuade a community are also not conspiracists. If some of them collude privately to co-ordinate an information campaign, that might be considered a conspiracy ... or good sense.

Where one sits on these issues is based on values. There are conflicting values of science involved, conflicting methodologies, conflicting philosophies .... and they don't mesh. Values include goals/agendas.

Conspiracy is bandied about way too much. Conspiracies exist, no question. A conspiracy is not just collaboration in private for an agenda. To me, a conspiracy is collaboration in private for an agenda that seeks to violate accepted standards, rules or laws. If it doesn't, its legitimate though not always welcome.

The XMRV debate could still be won by the pro-XMRV group. Its not disproved/falsified. The side which is staunchly defending the anti-XMRV view are using a process called verificationism, not falsificationism. Basically, they point to steadily accumulating data that supports their views. However, they tend to suffer from dogmatic verificationism. That is they dismiss, downplay or ignore contrary evidence. This is very apparent in psychobabble, but I see it in the XMRV debate too.

The problem is, the other side - proXMRV - are also using verificationism.

So are they both wrong?

Verificationism has value in early days of experimental and explorative science. It also has value in accumulating data for pragmatic purpose. There is a concept called tenacity in philosophy of science. New hypotheses/models/theories get attacked. This is normal. Good scientists carry on regardless, tenaciously pursuing their model until it has evolved enough that it can go beyond verificationism. So an emerging model of anything, under attack, is best served by people who fight for it in a highly rational fashion. In this sense it is the old school, conventional wisdom, dogma, that is defending their turf and more likely to be inappropriately dogmatic, even though they might be right.

Now I do think a conspiracy probably exists that involves ME research. I am thinking about writing a book on it, but that is all I want to say for now.

The Lipkin et. al. study into XMRV prevalence in ME patients goes beyond verificationism. Its falsification testing in my view. That makes this a higher standard of study than anything that has gone before. We should pay close attention to it, regardless of the outcome.

Bye, Alex

PS I consider myself a pragmatic rationalist/pancritical rationalist. So my bias, my values, show in that I regard falsification as a higher standard of evidence.

 

[currer]

There are moral questions in this debate too.

Given that PWME are abused and disparaged by the majority medical opinion, I am horrified to see "patients" (I suppose,) equally eager to abuse and vilify Dr. Mikovits, who has put her career on the line in an attempt to help us.

Whether her science is right or wrong is not the point here. (I still believe the HGRV hypothesis is not disproved.)

The point is that she was brave enough to do this.
I am utterly disgusted by the baseness of some of the remarks about her I have had to read here.
We of all groups in society should know not to do this.
And this is why I believe those "trolls" among us who are most critical are NOT genuine ME sufferers, despite their pretence that they are.

Such opinions would be impossible for a decent person to express who had also had the experience of enduring the predjudice and contempt which all ME sufferers must undergo.

That such a shameful moral attitude to Dr Mikovits is tolerated here, no, I am afraid, - encouraged, will always be to the discredit of this site, and makes me feel uncomfortable about coming here.

And I do not write this because of "adulation" of Dr Mikovits. I write it out of common decency.

 

[alex3619]

Hi currer, respect for people like Mikovits should indeed be the case. Just being an ME bioresearcher is enough to damage careers from what I gather. For someone to put their convictions first and try to help us in the face if the ignorance and prejudice that exists out there is praiseworthy. I have not had a bad thing to say about Dr. Mikovits, I have no idea of the cirumstances surrounding many of the claims. The closest I come to saying something "bad" is that I think her science should be tested - but then I think that all science should be tested. I will not debate on the ongoing legal issues - I simply do not know enough and it is wrong to speculate on such matters, although I cannot help but be concerned. It does not serve our community to speculate on legal issues in my view. Now straight reporting on such issues is information that the community is interested in for a range of reasons, and I have no problem with that.

The same goes for the WPI or a range of other researchers. Researchers can be mistaken or hold different views but that doesn't grant a licence to disparage them.

Of course I am somewhat hypocritical in this - there is one researcher whose science I disagree with, and that science I intend to dispute whereever and however I can unless the theory improves so that it explains the data. I don't think I have to spell out who that is.

Bye, Alex

 

[bullybeef]

I am feeling quite embarrassed to receive such support for simply calling a spade a spade, and I am quite overwhelmed that my comment brought fellow people with ME to come forward and express their grievances. If this is a ME/CFS Forum as the title above suggests, I think it is time to give this site back to the sufferers; it should not belong to a group I have personally coined 'the retroviral police'.


I came to these sites when I was first diagnosed to learn and understand what ails me, not to be eluded into believing my symptoms were caused by a tragic youth, or such. I do not have a degree, or a phd, or even a masters, in fact my qualifications are meagre, and even more so now my brain is turning to mush. I have been trying to understand what I can, by giving myself time to learn from information put before me, and from people whom make sense and show me evidence. And I haven't seen any evidence that disproves HGRVs are infecting humans. And that's as far as my understanding goes. And it matters little whether I believe it or not, I have little bearing on the outcome anyway.


As far as my original point was, my biggest and most personally grievance I have come across on sites like these are groups of people whom come onto what are supposedly ME Support Forums, and gloat when the community receives a blow, such as the pre-Xmas paper retractions. A group of desperately ill people, some of which are very lonely during a holiday season, and a group of people infiltrating their haven and gloat incessantly. Talk about insensitive, and if that isn't frowned upon, I am ashamed.


A support forum isn't always about debate, it is about understanding, guidance, and like minded sufferers coming together. ME imposters whom claim to be speaking fact when it is opinion is false and trying to create a divergence. There's a big difference between balanced opinion and debate, especially when most of us can't remember what day it is, like Rusty pointed out.


This forum really needs to wake up and understand, it may claim to be a ME/CFS Forum, but at this time it certainly isn't a support forum, and it is up to the gaffer and admin to protect that, first and foremost, over and above the science.

 

[RustyJ]

I am feeling quite embarrassed to receive such support for simply calling a spade a spade, and I am quite overwhelmed that my comment brought fellow people with ME to come forward and express their grievances. If this is a ME/CFS Forum as the title above suggests, I think it is time to give this site back to the sufferers; it should not belong to a group I have personally coined 'the retroviral police'.


I came to these sites when I was first diagnosed to learn and understand what ails me, not to be eluded into believing my symptoms were caused by a tragic youth, or such. I do not have a degree, or a phd, or even a masters, in fact my qualifications are meagre, and even more so now my brain is turning to mush. I have been trying to understand what I can, by giving myself time to learn from information put before me, and from people whom make sense and show me evidence. And I haven't seen any evidence that disproves HGRVs are infecting humans. And that's as far as my understanding goes. And it matters little whether I believe it or not, I have little bearing on the outcome anyway.


As far as my original point was, my biggest and most personally grievance I have come across on sites like these are groups of people whom come onto what are supposedly ME Support Forums, and gloat when the community receives a blow, such as the pre-Xmas paper retractions. A group of desperately ill people, some of which are very lonely during a holiday season, and a group of people infiltrating their haven and gloat incessantly. Talk about insensitive, and if that isn't frowned upon, I am ashamed.


A support forum isn't always about debate, it is about understanding, guidance, and like minded sufferers coming together. ME imposters whom claim to be speaking fact when it is opinion is false and trying to create a divergence. There's a big difference between balanced opinion and debate, especially when most of us can't remember what day it is, like Rusty pointed out.


This forum really needs to wake up and understand, it may claim to be a ME/CFS Forum, but at this time it certainly isn't a support forum, and it is up to the gaffer and admin to protect that, first and foremost, over and above the science.

Let's condense the point even further. The principle of 'fair and open debate' is being used to bludgeon the needs of me/cfs patients and increase our distress. There should be a bias towards us because of our disabilities. To deny this is to deny the real impact of our disease. To hide behind this politically correct tenet is a corruption of what this forum purports itself to be.

 

[Bob]

My thoughts about all of this are the same as bullybeef's and Rusty's.

And some people have sent me PMs to say that they agree with what I said in my earlier post... That they have experienced the same sense of unpleasantness on the forum.

It would be nice to have a supportive and safe place for patients to share information about subjects that interest them.

I would like the forum to be a space where patients can discuss all aspects of XMRV without being constantly challenged to the point where it feels like harassment.

But I do acknowledge the difficulties of being able to create a public space that suits everybody's needs.

And I know that there are many members who felt equally harassed, and under attack, in the past, when expressing opposing views about XMRV on the other side of the argument. A number of people have told me that they were persistently attacked when they expressed views that XMRV was not a cause of ME, etc.

Currently, there is a conflict on the forum, in that some people wish to explore all possibilities surrounding the subject of XMRV, whereas others seem to be motivated to challenge the validity of all XMRV research and to challenge any association with ME. This leads to the latter group of members persistently challenging the validity of other members' points of view and assertions about XMRV which causes a lot of ongoing friction.

I don't know if these opposing uses of the forum are reconcilable, because there are a number of genuine patients who wish to challenge information about XMRV on the forum.
But maybe something could be done about it by the mods, with some creative solutions?
For example, there could be a section for information sharing about XMRV for members who wish to explore all possibilities without being constantly challenged.
And then there could be another section where all points of view are welcome, where all of the circular arguements can be played out.

 

[free at last]

My thoughts about all of this are the same as bullybeef's and Rusty's.

And some people have sent me PMs to say that they agree with what I said in my earlier post... That they have experienced the same sense of unpleasantness on the forum.

It would be nice to have a supportive and safe place for patients to share information about subjects that interest them.

I would like the forum to be a space where patients can discuss all aspects of XMRV without being constantly challenged to the point where it feels like harassment.

But I do acknowledge the difficulties of being able to create a public space that suits everybody's needs.

And I know that there are many members who felt equally harassed, and under attack, in the past, when expressing opposing views about XMRV on the other side of the argument. A number of people have told me that they were persistently attacked when they expressed views that XMRV was not a cause of ME, etc.

Currently, there is a conflict on the forum, in that some people wish to explore all possibilities surrounding the subject of XMRV, whereas others seem to be motivated to challenge the validity of all XMRV research and to challenge any association with ME. This leads to the latter group of members persistently challenging the validity of other members' points of view and assertions about XMRV which causes a lot of ongoing friction.

I don't know if these opposing uses of the forum are reconcilable, because there are a number of genuine patients who wish to challenge information about XMRV on the forum.
But maybe something could be done about it by the mods, with some creative solutions?
For example, there could be a section for information sharing about XMRV for members who wish to explore all possibilities without being constantly challenged.
And then there could be another section where all points of view are welcome, where all of the circular arguements can be played out.

That last section is such simple solution Bob, i wonder what reasons its not up and running already. Do you not feel the public face of the site could be the prime reason for this not to be running already ? Could it be seen as damaging for a whole bunch paitents to be discussing the possibilltie that xmrv or even HGRVs could still be a real infection of humans, Despite evidence to the contary ? are some worried we lose cred, by allowing such patients to openly discuss unchallenged ( one one section only ) xmrv infection in humans ?

I suspect this might be the reason, but can not be sure. I have no issue with patients disagreeing that xmrv can or does infect humans. But its those that seem to take great pleasure in being right about it not infecting humans that i have the most distaste for. There are many that see it as a waste of time and resources, and one can not blame many for feeling this strongly, and those debates will, or can become a fight of anger. From both genuine patients and perhaps some that we, lets say, have reservations about. So its a pretty complicated and emotive issues isnt it. But just to clarify.

I can see no reason not to cater to both opposing views. Other than A public perception worry, from other people, some of which we would rather not look silly too.

There is a deep fear on this forum as being seen as irrational, further damaging the perception of CFS/ME to many Scientists. But for those that have been trod on for far too long, im afraid those considerations can become secondary. With the parenoia and mistrust that kind of treatment will ultimately bring on a open access ME/CFS forum. In my opinion both sides are valid. But i cant help but be on the defensive for those that have been abused
rather than the PR worriers im afraid.

As for JM yes she put her career and life on the line for us all. If her science had worked in all our favour, those that would like to see her fall further, would likely be praising her. So its a case of ill love and respect you, but only if your right. If your science falls, i dont care how much you tried to do for us. Or how much you have suffered in the fight against this abuse against the patients. Which im afraid strikes me as a little hypocritical and unsensitive, all the things they condemm others like wessley or sharp doing to us. Cant have it both ways. But it seems many want too. Just because it didnt turn out well for them. Rather like hateing a parent for not getting you the toy you wanted for christmas. Completely forgeting how much such said parent does for you all year around. Emotional short sightedness and sour grapes me thinks.

 

[Bob]

You make some good points, free at last, and I think it's very important for us to always keep the following in mind, when having these discussions, for fear of alienating a significant section of forum members:

I have no issue with patients disagreeing that xmrv can or does infect humans. [...] There are many that see it as a waste of time and resources, and one can not blame many for feeling this strongly, and those debates will, or can become a fight of anger. From both genuine patients...

As for why a safe place on the forum hasn't been set up already, it's just the complexity of catering for everyone on such a large and open forum, and the mods are massively over-stretched. It would be new territory for them to set up a section of the forum where certain views are not allowed, and it would involved a lot of work and they would probably receive a lot of hostility.

But such a thread has been allowed and set up already, so I know that your concerns are unfounded, free at last. But the thread isn't used much, because spontanaity means that people post on other threads.

 

[free at last]

You make some good points, free at last, and I think it's very important for us to always keep the following in mind, when having these discussions, for fear of alienating a significant section of forum members:



As for why a safe place on the forum hasn't been set up already, it's just the complexity of catering for everyone on such a large and open forum, and the mods are massively over-stretched. It would be new territory for them to set up a section of the forum where certain views are not allowed, and it would involved a lot of work and they would probably receive a lot of hostility.

But such a thread has been allowed and set up already, so I know that your concerns are unfounded, free at last. But the thread isn't used much, because spontanaity means that people post on other threads.

Yes your probably Right Bob i was just thinking aloud, Though i think my comments about JM and members or critics is right about some ( not all ) some of them

 

[barbc56]

Rights and responsibilities.

What I don't understand is why people feel so threatened and get defensive if others have a different viewpoint? It would be a boring world if we all thought the same way, eh?

Barb C. :>)

 

[alex3619]

Probably too philosophical for some, please skip if that is so

Hi barbc56, its not that at all for many of us. There are two issues. The first is that the tone of many of the posts in question is hostile. There are large numbers of very sick people reading these posts, its important not to present a hostile tone. Stress can shut their brain down. I don't think many realize it but a good percentage of us are not well enough to read these posts or use a computer. There is also a percentage who are just well enough to do so but hostility can drive them away.

Second, pursuant to the first, many of these posts are easy to demolish as they are irrational, denialist and not sceptical, but to do so effectively would involve becoming hostile, and violate the first rule, and potentially also violate rules for conduct on PR.

Much of the issue is not about facts. Its about perspective. Its about applied philosophy, although its rarely couched in those terms.

For example, I consider myself a pancritical rationalist with pragmatic leanings. I could never be a denialist. However, some things can be shown to be false, and I am happy with that. One of the problems on PR lately is that many people are behaving as if scepticism and denialism are the same. They are not. A rational sceptic cannot say, for example, "God does not exist". No athiest is a rational sceptic - that is more in the realm of cynism or denialism. The rational sceptic's position is "I do not believe God exists, but neither do I believe that God does not exist. Show me proof either way." The athiestic argument then moves to, "ah, but you have to admit its highly improbable that God does not exist!". That is an appeal to induction. Sure we can assign probabilities - but probabilities are only as good as the data you have. I use probability myself, but I don't believe in the result, its just a guide.

The pragmatic sceptic would say "I do not see evidence that God exists but there is benefit to living as though God does exist" or "I do not see evidence that God does not exist but there is no point in believing" or " I do not see evidence that God exists and I see no compelling reason to act as if God does or does not exist'. Which is chosen is not by rationality, but by pragmatic value. Its a choice, a heuristic to live by, not a belief.

So a rational sceptic cannot be unsympathetic to a religious viewpoint, and a pragmatic sceptic would be sympathetic or unsympathetic depending on the point in question and their personal values.

I do not consider myself a Christian, but I have Christian roots. However, if you ask me who was the most honorable and moral person I ever met, the image of a priest I used to know comes to mind. He didn't just preach Christian principles, he lived them. That is just for the record, in case anyone wonders what my position is. My own position on these is perhaps not readily pigeonholed, but it is closer to the Humanist perspective while embracing pragmatism and pancritcal rationalism.

Pancritical rationalism is a form of rationalism where everything can be questioned, including rationalism.

So, to get back to where I started, many of these posts present as though they are sceptical, and rational, but they are not rational.

Bye, Alex

 

[natasa778]

Hi barbc56, its not that at all for many of us. There are two issues. The first is that the tone of many of the posts in question is hostile. There are large numbers of very sick people reading these posts, its important not to present a hostile tone. Stress can shut their brain down. I don't think many realize it but a good percentage of us are not well enough to read these posts or use a computer. There is also a percentage who are just well enough to do so but hostility can drive them away.

Second, pursuant to the first, many of these posts are easy to demolish as they are irrational, denialist and not sceptical, but to do so effectively would involve becoming hostile, and violate the first rule, and potentially also violate rules for conduct on PR.

Shame the mods don't seem to get it.

 

[barbc56]

There is also a percentage who are just well enough to do so but hostility can drive them away.

Second, pursuant to the first, many of these posts are easy to demolish as they are irrational, denialist and not sceptical, but to do so effectively would involve becoming hostile, and violate the first rule, and potentially also violate rules for conduct on PR.

I may be misreading, but I find it difficult to reconcile the above statements. You are saying don't be hostile because it can add uneeded stress to someone who is sick but at the same time it's if you really need to make your point it's okay to become hostile because it's the only way you will get your point across? There's a third option. If a post is "easy to demolish" then do it by addressing the facts.

Hostility, is not an effective method to get your point across, change people's views nor does it even make a point.

If a post is stressful or so upsetting, either don't read it, come back to it later or learn to deal with it by realizing not everyone is going to have the same opinion. Getting upset is only human and yeah it's harder when not feeling well, been there done that, but at some point it's important to realize that we have a choice how to respond. Hostile statements say something about the person making the statements, how we react says something about ourselves. If we take things too personally or become so defensive, the point we are trying to make gets lost. If we deal with the facts we can be more proactive in our responses.

It has to do with being able to express ourselves assertively instead of aggressively.

I've made my points, said enough, don't want to get too preachy, so will move on and get back on topic. :>)

 

[markmc20001]

Ok folks. Glad to see people are being honest. I know that is not popular to tell the truth, because it's takes so much effort to prove the truth with the way all the facts have been distorted for so long. And of course the good old pejorative use of conspiracy comes up.

There is clearly people trying to control the message around ME. More specifically, they seem to be most interested in XMRV. We have all witnesses it over the months/years in newspapers, science journals, and occasionally on TV. Now there is a group on them here actively posting on this forum daily for months.

Given the admitted relationships by posters who have clearly chosen sides against XMRV research, It is clear these people controlling the message/concensus have relationships deep in the scientific community, and media community, and ME community. This makes it even more horrific to a patient/doctor searching for truth and solutions.

We've been going through this shit for 30 years? It is only now painfully evident because the internet allows greater transparency.

One could take a leap of logic and surmise this is one of the reasons Rupert Murdoch and friends want to push through SOPA. They are frustrated with the amount of effort it is taking to control the populations. Populations with the ability to read for themselves what the heck is going on!

They nonsense we've been fed....

There is clearly a message coming from somewhere, and that message is keep that Autism and ME news/research under control!!! make the epidemic go away!! Myra, and Simon, Reeves, Crawley..??? This is clearly the policy and has been to make the epidemic go away by muddling the research with psychobabble and garbage to drown out the good biological explanations/research for the illnesses.

Get the picture????

It's not an infection, it's not toxic poisoning causing all your health problems(brain damage, nerve damage, pain, fatigue), not ME....... it's autism, it's CFS, it's mass hysteria.......go take some antidepressants or other expensive drug that will screw up your, brain, stomach, and liver even more.

The day after TODAY reported on the baffling case of 12 teenage girls at one school who mysteriously fell ill with Tourette's-like symptoms of tics and verbal outbursts, a doctor who is treating some of the girls has come forward to offer an explanation. Dr. Laszlo Mechtler, a neurologist in Amherst, N.Y., says the diagnosis is "conversion disorder," or mass hysteria.

http://todayhealth.today.msnbc.msn....ery-illness-now-has-a-diagnosis-mass-hysteria

Ending the Autism Epidemic:

The proposed changes would put an end to the autism epidemic, Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of a new analysis that predicts a decrease in diagnoses should the definition be altered. We would nip it in the bud think of it that way.

Read more: http://healthland.time.com/2012/01/...s-will-some-kids-lose-services/#ixzz1kBs2ImIc

http://healthland.time.com/2012/01/...inition-changes-will-some-kids-lose-services/

Anyways. Get this people. It is no accident. Yale can end the Autism epidemic by changing the diagnostic criteria!

It goes way beyond this little forum. They have been making people sick intentionally for years. Flouridation in drinking water, mercury in dental work, aluminum/mercury etc in vaccines, corn syrup to help diabetes along.

The dentists, and psychologists (and more) that control the "consensus" for our "fatigue" research have been co-opted.

The newspapers are owned by Murdoch and friends. He certainly will release whatever news he is paid best for.

I could go on and on....

Anyways, the forum software is free if anybody decides to start another forum and try to keep out the special interests. I suspect it would take alot of energy and moderation to do that.

http://www.simplemachines.org/about/smf/copyright.php

sorry to be so negative folks. I have a strong sense of right and wrong, and what has been done to us is really wrong.

God bless all those who try so hard to do the right thing.

MarkMc20001

 

[Ecoclimber]

UPDATE:

FYI: Referring back to my post #108, Sidney Grossberg updated GenBank by removing XMRV from the name on the JHK retrovirus file. The title is now:JHK retrovirus isolate JHK-3 5' LTR, partial sequence; and gag protein (gag) gene, partial cds
GenBank: HM119591.1

Eco

 

[bullybeef]

Great use of the deity analogy, Alex. I would also consider myself agnostic, maybe borderline atheist, but that doesn't mean I would use my beliefs to gloat if a Catholic or Christian lost a loved one, or suffered a family tragedy, or just received bad news. Nor do I ram my theologian opinions down someone's throat if they choose to state their beliefs. Each to their own.


Ironically, the heated point of this thread is that we can't discuss something that clearly does exist, but probably still hasn't been given the correct name. And if there are more than one HGRV variant, it could take years to fully sequence and separate them by name to even understand their existence. The question is whether we are infected, and that these viruses are causing symptoms we relate to as ME.


And even I had my own cynicism towards to acceptance of XMRV/HGRVs when the prevalence figures were first estimated. Surely no government would concede something is affecting around half a billion people is controllable. AIDS isn't a problem for Western society because the majority of sufferers live in the third world. A disease causing, incurable virus infecting the civilized world would be a social nightmare for governments. Tens of millions of people whom have ignorantly led a working life, would realise why they have been unwell for so long, and it is these people governments are afraid of discovering what ails them.


If some have the pretence that we 'believe' in HGRVs, it is maybe because the history of ME since the mid 1980s have taught us not to trust the people whom were supposed to make us better. I have only suffered a short time in relation to many people I have come to know, and my deepest respects go out to them for how they have endured, but if nothing comes of this latest retroviral linkage, it won't be the first time science and government have stepped in to remove the association. Many have been here before, so their own cynicism isn't down to ignorance of a possibility, it is down to the pessimism society has shown us.


We have been made the underdogs, and although being shot down is something we're used to and can relate to, when people whom probably aren't sick do it on our very own forum, that isn't debate, that's vitriolic diatribe and we could say there's prejudice in there towards a very sick and desperate community which is tantamount to shooting fish in a barrel. This group have gagged the majority of sufferers from making their point due to fear of recrimination.


And the disturbing thing is, these conceited members probably find it amusing, in some sociopathic way, because their only reward must be their own sense of self-righteousness. Why else do it?

 

[Bob]

What I don't understand is why people feel so threatened and get defensive if others have a different viewpoint? It would be a boring world if we all thought the same way, eh?

Barb C. :>)

Now that's a crucial question Barb, and I think it's something that many on the forum don't understand.
So I'll try to answer it the best I can, in a friendly, constructive, informative way.

For me personally, it's not a case of feeling defensive or threatened, but rather it's a case of feeling frustrated, irritated and annoyed, which ruins my enjoyment of the forum.
But for others, it might well be a case of feeling threatened, for various reasons which i'll try to explain below.

The reason that I get frustrated, is because the discussions are repetitive and circular... I already know all the arguments against XMRV being a human virus and a cause of ME... But I still wish to share information about XMRV and to explore the possibilities of XMRV whether it relates to ME or not.
But when we get shouted down (that's what it feels like) to point of harassment (that's what it feels like) every time we post something about XMRV, then the frustration means that it's not worth having the discussion and exploring our thoughts online.

The people who wish to disrupt XMRV discussions (there clearly are some on this forum who don't have a genuine interest in ME) have a lot of energy and they seem to be very motivated. Some of these members have left the forum over time but there have been quite a few who really aren't interested in ME, my welfare, or even the wider field of retrovirology. They just wish to debate a very narrow issue. Simply put, they destroy my enjoyment of the forum, so I stop posting.

What I don't understand is why people can't allow us to have these discussions about XMRV when it is clearly a subject that many of us are still interested in.
If I wasn't interested in XMRV, then I wouldn't check into the XMRV forums, so to me it just seems like people are being disruptive on purpose, to pursue their own agendas. I know that's not always the case, and I accept that there are a number of genuine patients on the forum who get frustrated about the XMRV research and discussions for genuine reasons, although I'm not clear what those reasons are. (I have been told in the past by one member, but I can't remember the conversation now.)
To clarify - I don't object, at all, to the genuine members and ME patients posting their perfectly legitimate views and opinions.


That's my perspective, but other members might see the apparent attempts to disrupt the discussions about XMRV from another perspective, and might see this apparent disruption as yet another attack on our community, and so they might take it very personally. From what some people have said, I think this is clearly the case for some people.

Some members who have been very vocal about XMRV not being a human virus, have seemed very motivated to disrupt threads (that's how it seems to me) by repeatedly posting their strong, and sometimes abusive and libellous, opinions. This persistent and highly motivated negative posting has been carried out to the point of harassment (this is how it can seem). And some members see this apparent abuse of the forum as a further attack on the ME community. I think this is a perfectly reasonable reaction, and it's one that I sympathise with.

Any genuine ME patient knows the amount of suffering, difficulty, and despair that we suffer from over a long period of time, and to have a forum where it feels like external people (without a genuine interest in ME) are continuing this same attitude of denying ME patients their thought, opinions, and illness, seems like a further attack on our lives. So the forum thus becomes an unsafe place to use. Any genuine patient surely must understand why we need a safe place to share information?

Barb, we just want somewhere to air our views and share information, about a subject that interests us, without constant disruption.
If PR can't provide that space, then fair enough, we will have to look elsewhere, but that would be a great shame.

And to clarify, the level of disruption is constant, and it usually comes from people who do not have a genuine interest in ME. We simply can't have conversations about XMRV without being persistently challenged in an aggressive way. Other's might not interpret this as 'disruption' but they might not be aware of exactly what has gone on over the past few months. To those of us who are interested in the subject, and just want to explore the subject with each other, it feels like disruption and harassment.

I hope that helps clarify the situation from my perspective. Please feel free to ask any further questions, and I'll try to answer the best I can.

 

[alex3619]

I may be misreading, but I find it difficult to reconcile the above statements. You are saying don't be hostile because it can add uneeded stress to someone who is sick but at the same time it's if you really need to make your point it's okay to become hostile because it's the only way you will get your point across? There's a third option. If a post is "easy to demolish" then do it by addressing the facts.

Hostility, is not an effective method to get your point across, change people's views nor does it even make a point.

If a post is stressful or so upsetting, either don't read it, come back to it later or learn to deal with it by realizing not everyone is going to have the same opinion. Getting upset is only human and yeah it's harder when not feeling well, been there done that, but at some point it's important to realize that we have a choice how to respond. Hostile statements say something about the person making the statements, how we react says something about ourselves. If we take things too personally or become so defensive, the point we are trying to make gets lost. If we deal with the facts we can be more proactive in our responses.

It has to do with being able to express ourselves assertively instead of aggressively.

Hi barbc56, on the face of it your argument has merit. Unfortunately the merit only applies theoretically, how you implement this determines if its really the case.

You don't have to be hostile to be perceived as hostile.

For example, lets say Poster A keeps making denialist posts. Poster B keeps refuting them, then gets bored and writes a blog. In that blog are ten common refutation. After a while, every post by Poster B just gets a link to the blog and a refutation, cut and paste. Twenty times later, this looks hostile. It can be perceived as hostile by others and by Poster A, yet in every case its just a logical refutation. A perception of hostility does not have to arise from hostility.

Now, take Poster A again. Poster A says "Thats wrong. There is no proof of that. Nobody agrees with that."
Poster C takes a different but similar positiion: "The evidence does not appear to support this claim. Could you explain further?"

Which do you think is the more hostile statement?

Now, Poster A keeps seeing claims made that Poster A disagrees with. Poster A repeats the same argument again and again and again. Poster A knows that most people understand it, but it frustrates Poster A that they don't agree with it. Poster A however keeps asserting the same thing. It only deals with the facts, but its repetitive and targeted. Ten times this happens. Twenty times. NOW other people start to complain that Poster A is hostile. Poster A steps back and says "It was all factual. What is your problem?"

Facts are slippery things. To my way of thinking, very little is Absolute Truth. Only in an arbitrary created system can we know Absolute Truth because it was created that way on purpose. Like the obvious truth that 1+1=2 in standard arithmetic. Its true by definition, not fact.

The problem with addressing facts in a hostile way is this. Once one is perceived as hostile one loses credibilty. As one loses credibility one's statements lose impact. Unless the fact or claim is self evident, people start to doubt. At some point they are going to start asking the facts only person to prove their points. All their points. One by one. If the response to that appears hostile, and by now many responses may look hostile even if they are not as people have come to expect it, then one loses even more credibility. The credibility gap grows.

In the end this often results in a flame war, and the mods have to step in.

In the meantime one has convinced almost nobody. Those who agreed with the claims to start with still agree with them. Those who disagreed with the claims still disagree with them. What is the point?

This problem is not about the facts or arguments. Its about how they are presented. A post that presents a negative point in a way that is working toward a constructive inquiry is good. A post that presents a negative point that looks antagonistic will often be seen as hostile, maybe not the first time, but often by the twentieth time.

If a post is distressing, a person can indeed stay away. However, take this thread. Here are people interested in XMRV. We know most of the arguments by now, or we would not be here. If someone just has to stay away to avoid being stressed, yet they want to read more on this topic, apparently hostile and antagonistic posts will just drive them away. Its denying this thread to very sick people. That in itself is hostile, and can be perceived as hostile, even though "its just the facts".

Bye, Alex

PS Just picking up on a point in the section I quoted. NO, I am not saying its OK to become hostile to make a point. I am saying it is NOT OK, but that it often appears the only way to make a point is to do so - so the most obvious response is to refrain from commenting. So people leave, and the argument is abandoned. I am trying a different strategy, strategy 4. Can you guess what it is?

 

[currer]

Why has the name been changed?
Is the use of "xmrv" too politically sensitive to be used?
If Grossberg wants to call his virus an xmrv is that a problem? I thought nomenclature in these viruses was pretty fluid.

Why does he have to obey a "prominent scientist"? Cant he follow his own scientific judgement?

Eco, you make it sound like the thought police are here.

UPDATE:

FYI: Referring back to my post #108, Sidney Grossberg updated GenBank by removing XMRV from the name on the JHK retrovirus file. The title is now:JHK retrovirus isolate JHK-3 5' LTR, partial sequence; and gag protein (gag) gene, partial cds
GenBank: HM119591.1

Eco

 

[bullybeef]

Agreed Currer, I think the fact a 'prominent scientist' can write to another researcher, someone whom has been looking at gamma retrovirus in humans for over 20 years, to request him to change the name of the organism he discovered, is highly suspicious in itself, and only adds to the cloak and dagger nature of this situation.


Just the fact the identify of this 'prominent scientist' is purposely kept incognito by a member of a ME forum asks questions why a person on a ME forum is keeping these things to themselves. Whom are they really protecting, because it certainly isn't me.


Why indulge in the controversy, if your looking to try to actively and rationally separate the issue. These people are just adding to the propaganda and making things sound more ridiculous.


We maybe sick, but we're not stupid.