Ruscetti Acknowledges Reuse of WB Image

[SOC]

Many many thanks to you Sam, for helping our community.

I, too, extend my thanks to you Sam, for all your time and effort in support of PWME worldwide.

 

[Wonko]

Actually Wonko, I'm not demanding that other people immediately start using their full name, because I do understand the problems- only too well- of what you are saying. I've been personally attacked in many ways because of my own determination to use my own name and openly stand by my own actions in supporting the ME/CFS community.

Nevertheless, this is a major problem that I'm describing. There is no easy answer, but it means this community needs to develop extra vigilance and rational scepticism on these forums against agent provocateurs, and one way to do this is to look at the amount of 'Specific Issue Antagonism' going on.

But what I cannot do, and none of you should, is just accept blindly, without challenge, when random anons claim to be 'scientists' and have 'special knowledge' of situations, or focus on attacking Judy Mikovits and accusing her of fraud, misconduct, and of being a bad, bad girl, while ignoring something as important as the discrepancies of the PACE trial.

P.S. I am a member of a number of discriminated groups actually! But I understand what you mean.

My aplogies Angela if I misinterpreted your statement;

"This is a prime example of why more people should use their real names on these forums, and be brave enough to stand by their comments"

to include myself, an anonymous poster

My further apologies for not being aware of your situation and commenting in such a fashion

 

[Angela Kennedy]

I don't know Sam well, but he is not as you are describing him Angela. Sam is a legitimate member of the forum, and I find him reasonable, friendly and engaging.

Well I may be wrong about Sam, Bob.

It doesn't mean my concerns aren't correct though, about the various anons on here who act as Specific Issue Antagonists, and the dangerous effect on people in this forum and ME/CFS advocacy, let alone the integrity, reputation and careers of scientists who have dared look beyond the psychogenic by default fallacious explanation.

 

[Bob]

It doesn't mean my concerns aren't correct though, about the various anons on here who act as Specific Issue Antagonists, and the dangerous effect on people in this forum and ME/CFS advocacy, let alone the integrity, reputation and careers of scientists who have dared look beyond the psychogenic by default fallacious explanation.

I appreciate what you are saying Angela. I really do. But you need to be careful not to generalise and paint everyone with the same broad brush. And to be careful to separate the specific type of people you are talking about here from other regular forum users who have a different perspective from yourself.

 

[Angela Kennedy]

I'm unreliable, a coward, an "anon", the maker of unsubstantiated claims and a Specific Issue Antagonist (specialising in farces).

Such flattering appelations, Angela. If I update my CV accordingly, will you provide a reference?

Take offence if you like Sam. But, if you are a patient who has done all this work on PACE etc. You will have some awareness of the multiple, serious discrepancies of the PACE trial, yes?

Are you not concerned at the inconsistency between the way the two issues are treated? Are you not concerned that this community cannot even get a fair hearing about our concerns re PACE, while a confusing image on a powerpoint is decried as fraud and scientific misconduct, as a 'serious' error?

Can I expect your public support and concern when I upload the details of the debacle that has been the latest response to my complaint about the PACE trial to the Lancet, possibly?

 

[Angela Kennedy]

I appreciate what you are saying Angela. I really do. But you need to be careful not to generalise and paint everyone with the same broad brush. And to be careful to separate the specific type of people you are talking about here from other regular forum users who have a different perspective from yourself.

I'm actually working extremely hard to be specifically reasonable her Bob. And to try not to generalise. I'm not perfect, and am working under pressure: an odd problem with my computer; some nasty personal attacks on me and others which were allowed, as I do seem to be fair game for personal attacks on this forum. Multiple threads about the same issue. And I don't have ME.

There DOES appear to be a problem of Specific Issue Antagonists who have demoralised others because they are obsessed with attacking Judy Mikovits and patients, and decrying the research. Other people have commented on this. There have been relentless attacks on people, throwing up of unsubstantiated claims, dodgy, unsourced images. Some of these people have been obvious Specific Issue Antagonists for some time, yet have been treated better than actual known supporters of the community, or indeed patients.

There do appear to be 'regular forum users' whose 'perspective' is not that of supporting the ME/CFS community from the constant attacks they face. People who attack lesbians would not be allowed on a Lesbian forum. People who look down on AIDS victims would not be allowed on an AIDS forum.

I haven't been able to keep up with the relentless attacks on the integrity of Judy Mikovits on this forum alone. And I don't have ME. Forum interaction has been odd for a long time now, and I think genuine ME patients and their genuine supporters are very vulnerable on this forum.

So it doesn't matter how reasonable I am and try to be. The problems remain.

 

[SilverbladeTE]

1) Personally, I've went by the nom de plume' "Silverblade the Enchanter" for about 14 or more years on the Net. so I stick to that or the reduction "SilverbladeTE"
on the net, identity is important, but for your own good and way we deal with others, having a readily identifiable name/character is essential.
We do not have faces to see and study and understand their honesty, decency, humour, etc.

2) Wonko,
on the UK discrimination and frankly IMHO, eventual push towards involuntary euthansia (medical force, or by denying rights/welfare, see recent crap about the costs of cancer treatment, being raised )
yeah, I know what yer saying, it is scary :/
But frankly f' the bastards crosswise!
If you show fear/weakeness to a bully, they just get worse, so kick 'em in the balls!

3) "Our Enemies" whoever the hell they are, could indeed use anonymous pundits to push their agendas
that is how they work: Big Business and "interest groups".
For a sniff of how this works and how it's going, please note that recently, it was discovered that Amazon's "Mechanical Turk" a crowdsourcing service whereby folk will do IT tasks for small payments, was being abused by spammers
http://www.economist.com/blogs/babbage/2011/05/repetitive_tasks
So, unethical people could hire similar workers to carry out unethical attacks on anyone who is a problem to them.

Then as I've noted, see how folk like JunkScience work, funded by Big business to deride anything/anyone who gets in the way of the Almighty Buck, their "CO2, we call it life!" advert was one of the most cynical and evil damn things I've ever seen.

Mass emails and other methods are used to manipulate the public. The british scum-sucking tabloids are obvious proof of such and make Paravda and even the Volkischer Beobachter pale in comparison, and heck as we now know, they were engaged in highly illegal activities, bugging and hacking even the deputy prime minister Which is espionage and treason, fyi, and you'd have been hung for it a few decades ago. See the "Hacking Scandal", which is monstrous, huge and exposes what is really going on.
FYI, corporate espionage and even sabotage, have become huge business in last 20 years.

And again, how the media spins things nowadays, about every major media outlet is linked incestous fashion with goverment and Big Business.
it's more easy to see it with the crazy italian media largely owned or fealty to Berluscconi which is incredibly unethical and dangerous for democracy to have it's leader pulling the damn media strings.
You'll find a network of folk working for, owning, execs for a string of different companies and groups, as I've stated before, regarding Wakefield, if one of the Murdochs ends up as an exec on GlaxoSmithKline, and there's links to the Lancet etc, how the hell can you have honest, ethical validity in what ANY of them say? There's too much conflict of interest..and absolutely no damn responsiblity, you cna never pin anything on any of these folk, which is why they've set it up like this: to evade responsibility,to evade paying tax, to evade criminal prosecution for tings that would get anyone of us normal sods jailed for life.

All of them are connected, each has too much to loose, so each sucmbag at the top supports each other, see how this applies to the banks, the financial collapse etc. The shareholders were their own damn cronies or execs!

Plus there's simple human ego, jealousy etc when it gets to the more "sane" world of Science. Some folk are annoyed that a "thing with a womb" has dared to stand up to them, or showed how damn stupid they were. Blech, alas, as the British Medical world shows, mysogny is alive and well.
As well as the usual ridiculous damn ego crap you can get in research, I can show you tons of historical examples where people's work was sabotaged, stolen, their honours claimed by people who'd pushed them aside etc

None of this means that there IS a conspiracy, small, large or by several groups against Mikowitz, or ME. But sure damn proves it can happen.

4) Everyone has their own opinion, and it will only change by hard perosnal experience, usually. You can't force folk to agree with you!
many folk alas, are gutless or just silently terrified inside, and follow the "crowd", this is how a great many terrible crimes have been allowed to happen. Some are cowards (which is when you let fear rule you when you can fight it or use it as an excuse for evil deeds), some are just scared or weak, never easy to say which is which.
Folk seek support, not wanting to be "left out" and vulnerable, usually following iconoclastic folk ,who maybe genuine, maybe sociopaths, or maybe manipulative. Again, never easy to say which is which.
hey I'm an asshole, but at least I know it

5) Most researchers are honest, they don't get paid huge sums of money, they do it for the love of it.
Fraud and problems can happen when there's huge financial incentives or ego, or fear (like running out of time on a project)
which is why I think letting folk have patent rights or benefits for what they've researched is unacceptable, especially when they later go onto positions of authority or safety oversight on their own bailiwick, be it Mikowitz or anyone, IMHO, it is unethical and dangerous in the long term. Main concern here for me is vaccine safety, but eventually, Human genetic modification, because that could become a damn nightmare in the future.
iirc didn't Mikowitz give away many rights ot her work so it oculd be used by others? if so , kudos to the lady!

Plus of course, egos get into play...we are all but mere Mortals, we are NOT "gods of adamantine science"

So, MOST of what the researchers are doing, and arguing over, is honest Science. So let 'em get on with it.
I'm sorry, but these things always take time, sadly, the truth of events may take decades to come out, if ever.

6) If anyone is here, posting fraudulently...
One day it could be you or your kids suffering this terrible disease, and you will have contributed to their suffering, you will have ensured they will die without treatment.
No amount of money can make up for watching someone you love suffer, because of your own damn folly.
I think the vast majority of posters are honest, and it's wise ot keep a sceptical eye, but...there's anxiety, and then there's paranoia


7) Difficult as it is, CHILL, folks. turning on each other only hurts us all, and makes the Weasels job easier.
NEVER give the enemy what they want.
May God, or whatever you believe in, bring you peace and joy

 

[Bob]

I'm actually working extremely hard to be specifically reasonable her Bob. And to try not to generalise. I'm not perfect, and am working under pressure: an odd problem with my computer; some nasty personal attacks on me and others which were allowed, as I do seem to be fair game for personal attacks on this forum. Multiple threads about the same issue. And I don't have ME.

I do appreciate many of the points that you have been powerfully making Angela, and I think they need to be said.
But where you have not been fair, I think it is right to point it out.

There DOES appear to be a problem of Specific Issue Antagonists who have demoralised others because they are obsessed with attacking Judy Mikovits and patients, and decrying the research. Other people have commented on this. There have been relentless attacks on people, throwing up of unsubstantiated claims, dodgy, unsourced images. Some of these people have been obvious Specific Issue Antagonists for some time, yet have been treated better than actual known supporters of the community, or indeed patients.

Yes, it does seem to be a problem, but this phenomena is mainly external to the forum. Maybe our community needs to come together to work out how we can counter these vested interests. However, some people do have legitimate frustrations and issues with the WPI and with Mikovits.

My own opinions pretty much coincide with yours, in that the WPI have been a force for good, and that it is counter-productive for ME patients to attack the WPI. And I also agree that the PACE Trial is far more important for our community to focus on, and that this constant attacking of the WPI is distracting, unhelpful and destructive.

There do appear to be 'regular forum users' whose 'perspective' is not that of supporting the ME/CFS community from the constant attacks they face. People who attack lesbians would not be allowed on a Lesbian forum. People who look down on AIDS victims would not be allowed on an AIDS forum.

I agree that not everyone on the forum seems to be here for legitimate reasons (but I can only think of two people myself), and I find that they ruin the atmosphere for everyone else. I do think it is an issue, and maybe a new thread needs to be started about this specific issue in an appropriate section of the forum. I would personally prefer that PR was a forum for patients, by patients.

I haven't been able to keep up with the relentless attacks on the integrity of Judy Mikovits on this forum alone. And I don't have ME. Forum interaction has been odd for a long time now, and I think genuine ME patients and their genuine supporters are very vulnerable on this forum.

Agreed.

So it doesn't matter how reasonable I am and try to be. The problems remain.

Agreed.

 

[Esther12]

Some people who have an interest in virology rather than CFS may have posted about only XMRV stuff.

Sure - it would be great if we could get more people interested in looking critically and carefully at all aspects of CFS, but I don't think we should be suspicious of someone just because their only interest is in XMRV. There are plenty of prejudices around CFS, and someone with no real knowledge of the condition might be more likely to be swayed by them... but maybe not. Plenty of people are fair and reasonable. There's more room for misunderstanding when people are poorly informed about one another's circumstances, but so long as we stay open to engaging in honest and respectful conversation, those problems can be overcome.

I don't think that those criticising the WPI/Mikovits should be presumed to also be criticising CFS patients.

I like having as wide a range of views as is possible on a forum, and think that we would benefit from more non-CFS patients.

 

[ukxmrv]

I just find it difficult to believe any scientist would intentionally set out to dupe (or resort to fraud) and ruin their professional reputation/credibility forever.

Enid,
Have a look on the internet for Gallo or Weiss and HIV. Then to put into context it should be pointed out that Gallo has opposed XMRV findings and research. Both have an army of Virologists that they mentored and a history of mistakes, dirty tricks (read And The Band Played On) and accusations.

 

[Lee]

This is bad

Ruscetti confirms that the version of the slide - the LABELING of the slide - at Ottowa is original and correct, and that the Science figure came after.

Although he tries to excuse it, if the Ottowa version is correct, this mean that the version - the labeling - in the Science article is wrong.
Not the patient numbers - that isn't a problem, it seems, and that part of what he say makes sense. But the figure is wrong in OTHER major, substantive and misleading ways. Plural.

First, at Ottowa , lanes 2 and 5 are labelled as CFS patients without 5AZA treatment. In Science, they are labelled as Normal controls. In other words, thos are lanes showing MECFS patients who DO NOT express viral proteins. The science figure is making the argument that people with CFS express viral proteins. Changing a patient non-expressing lane to say they were controls, is fundamentally misleading.

Think about that. The Science paper is making the argument that people with ME/CFS are infected with XMRV. That figure is making the point that people with ME/CFS express viral proteins, while people healthy people do not. They have two lanes showing people with ME/CFS and NO VIRAL PROTEINS - but they change the label to say those are normal controls.It is a misrepresentation of the experiment and of the data. At best, it is unforgivable sloppy, mislabeling a key piece of data in a way that causes it to say something other than what the experiment actually said. This - to put it in terms that scientists will be using to evaluate all of this - is really, really bad.

Second. 5AZA treatemnt of cells can cause derepression of endogenous retroviruses. That is jargon. What it means is that our own human DNA contains a lot of old crippled viral sequences. They cant make functional virus - but they can make viral proteins. They are turned off by methylation - they don't make protein. Treatment with a demethylating agent - 5AZA - can allow them to turn on and make viral proteins. This is we known I'm not a virologist - I'm an out-of-dae evolutionary geneticist - but it is well known, I knew it, and I've confirmed it with virologists, verbally and by going into the literature.

There is no way, based on the Ottawa labeling, to tell if the proteins they are detecting on that blot are XMRV viral, or human. They don't do the proper control - which would be to treat control with 5AZA to compare.

But worse - in the Science paper they never reveal that they used 5AZA. This is NOT a trivial omission. It fundamentally changes the interpretation of that figure. If they had revealed that their patient cells were treated with 5AZA, but the controls were not, that figure would probably not - should not - have gotten through review. The figure does not say what they claim it says.

This is all bad enough, and Ruscetti's statement either ignores them (the 'control label) or does not adequately address them (the 5AZA issues).

Third - and if it is true, worst of all - the original image of the gel seems to have been uncovered by uncropping and unmasking one of those figures. That image is now out on the web, and the original lab labeling does not match EITHER of these two versions.

Changing labels so that patients are represented as controls in a way that hides data contrary to the hypothesis that ME/CFS patients are infected with XMRV - at the very least, this is very, very bad.

 

[currer]

Hi Lee,

Do you know I dont care a bit about this orchestrated furore about the slide?

Sorry to be so dismissive of your efforts.

 

[Lee]

currer:

You should care - years or research and a lot of money, and a lot of invested hope from people who don't need to be misled, have now gone into ffollowing up that Science paper - which is falling to pieces.

That is not an 'orchestrated furore.' It is fundamentally bad science.

 

[currer]

Aaaah! Youve really got me frightened now!

Seriously - most people on this forum have learnt to be cynical about attacks on research which can validate ME as a serious and transmissible illness.

You perhaps are not a patient with this disease, Lee.

 

[Bob]

Hi Lee,

Welcome to the forum.

I look forward to your support.

I'm sure that these issues will be resolved soon.

May I ask what are your opinions about the PACE Trial?

 

[Lee]

You are correct - I am not a patient with ME/CFS. I do take it seriously - I have a very good friend who has had it for over a decade - I've watched what it did to her and to her life. I want good research revealing the actual etiology(ies) and hopefully leading to effective treatments.

Bad science wastes time, resources, and money. It is becoming really clear that this was bad science - at best, it was bad science. THAT makes me angry.

 

[Esther12]

I think Lee has been unfairly criticised there. What prejudices is he meant to have displayed?

While things are still a bit uncertain, there do seem to be problems with the way this result was presented in the Science paper.

More importantly, the BWG results showed that the WPI and Ruscetti were unable to distinguish between samples from CFS patients, and samples from healthy controls. It looks very unlikely that the findings of the Science paper are going to stand up.

You should care - years or research and a lot of money, and a lot of invested hope from people who don't need to be misled, have now gone into following up that Science paper - which is falling to pieces.

That is not an 'orchestrated furore.' It is fundamentally bad science.

To be honest - from a CFS patients point of view, XMRV has probably been good for us. It seems like the approach to researching this illness has radically changed, not directly because of the XMRV finding, but perhaps because of the attention that has brought to the illness. In both the UK and US, things were already changing, but I think it's likely that XMRV helped speed things up.

Wasting years of research and lots of money is the norm for CFS. It seems like we've spent the last 20 years finding out that we were on the wrong track, and are now back to where we started. XMRV was a relatively minor detour.

 

[Bob]

You are correct - I am not a patient with ME/CFS. I do take it seriously - I have a very good friend who has had it for over a decade - I've watched what it did to her and to her life. I want good research revealing the actual etiology(ies) and hopefully leading to effective treatments.

Bad science wastes time, resources, and money. It is becoming really clear that this was bad science - at best, it was bad science. THAT makes me angry.

Hello Lee,

May I ask what your opinions are about the PACE Trial?

And does the PACE Trial make you equally angry?

 

[ukxmrv]

Lee,

Just checking to see if you have followed all the relevant news because you are new to the forum. Apologies if this is all old stuff to you. We don't get many "well" people here and you are very welcome.

How do feel about Dr Silverman and his contamination problem? How do you feel it contributed to the wasted money on XMRV testing by all the scientists who did negative attempts.

Do all the negative XMRV papers need to be followed up and looked at because of that?

What's your feeling on Alter/Lo? How should we be following that up?

What would you like to see happen about the MLV's/HGRV's that Lombardi et al found.

Obviously having seen your friend suffer like that you would want them to get treatment if they did have a HGRV.

 

[paddygirl]

Gallo

Enid,
Have a look on the internet for Gallo or Weiss and HIV. Then to put into context it should be pointed out that Gallo has opposed XMRV findings and research. Both have an army of Virologists that they mentored and a history of mistakes, dirty tricks (read And The Band Played On) and accusations.

I can confirm the Gallo part. I asked him to his face what he thought of XMRV. He said he had an interest as he had had PC. He then went on to say that ME was more than likely psychosomatic. That answer bore no relation to the question.

He then got his wife to bump into me - in a crowd of hundreds - to establish my credentials.

This was not long after the Science paper, and I didn't know what to think. It makes more sense now.