Chicago Tribune: Manipulation alleged in paper linking virus

[ixchelkali]

I hear what you're saying but these are open forums and anybody can join. We don't even know the names and addresses of 95%+ of the people posting. The whole reason the other forum got started was so anybody could say what they wanted with no restraint. It's been stated several times shame on journalists or scientists who judge a population based on internet comments. Perhaps the whole research community should be judged on what I just read in the Economist:

http://www.economist.com/node/21528593

Tsk, tsk. They're all corrupt and should go to jail

You're right. And there's nothing those who WEREN'T doing it could do to stop those who WERE. A certain amount of it consisted of emails being sent to researchers, and people are free to send whatever emails they want to. And those people who tried to stop it on this forum sometimes found themselves subject to hostile remarks.

I think what I'm trying to do is to urge people NOT to participate in that kind of action, to convince people that it does more harm than good. I'm not suggesting that we shouldn't debate the science or question the results of studies, just that we should do it respectfully and avoid ad hominem attacks. I'd like to convince people that sending nastygrams to researchers who are working on ME/CFS is not in the best interests of the patient community, and that it feeds untrue negative stereotypes of us.

I'm not even pointing fingers, or setting myself up as judge of what's rude and what's helpful. I'm suggesting we all consider our actions, try for objectivity, and not behave as though ALL researchers whose results disappoint us are out to get us. Even if a few of them are. Showing appreciation to people who try to help would be good, too.

 

[floydguy]

You're right. And there's nothing those who WEREN'T doing it could do to stop those who WERE. A certain amount of it consisted of emails being sent to researchers, and people are free to send whatever emails they want to. And those people who tried to stop it on this forum sometimes found themselves subject to hostile remarks.

I think what I'm trying to do is to urge people NOT to participate in that kind of action, to convince people that it does more harm than good. I'm not suggesting that we shouldn't debate the science or question the results of studies, just that we should do it respectfully and avoid ad hominem attacks. I'd like to convince people that sending nastygrams to researchers who are working on ME/CFS is not in the best interests of the patient community, and that it feeds untrue negative stereotypes of us.

I'm not even pointing fingers, or setting myself up as judge of what's rude and what's helpful. I'm suggesting we all consider our actions, try for objectivity, and not behave as though ALL researchers whose results disappoint us are out to get us. Even if a few of them are. Showing appreciation to people who try to help would be good, too.

The best solution may be to send committed researchers notes of thanks and maybe cookies or something.

 

[Wonko]

The best solution may be to send committed researchers notes of thanks and maybe cookies or something.

maybe before they've been sectioned, not sure they would be allowed cookies after they've been committed.

 

[floydguy]

maybe before they've been sectioned, not sure they would be allowed cookies after they've been committed.

Ha! For those researchers there could be some ex-lax or something baked in.

 

[markmc20001]

I agree that everyone is responsible for their own behavior and the WPI cannot be responsible for how some parts of the CFS community have acted. However they did feed the fires with their comments and some words from them would have helped calm things down. They played up to the notion that there is a conspiracy against CFS at times - not alot - but it did come out and coming from them I imagine it meant alot.

One of the problems is that that message - that ME/CFS is a serious disease that is not being served properly by the medical community - has been lost in the turmoil! With XMRV getting little positive airplay at all - we could (maybe ) have left XMRV as a media topic with the message that this huge community is getting almost no funding. I have seen nothing on that. There is room in the media for only a few stories....and that one did has not made it into the picture

Somebody thought there was a conspiracy against CFS? Sorry I missed that. Love a good real-life conspiracy.

Dr Kenneth Friedman is my favorite conspiracy theorist. I don't think he calls it a conspiracy though. Basically he gives a personal account of how his under investigation for trying to educate students about ME/CFS.

Here is a video of him talking about his experience, or whatever you want to call it.

http://www.youtube.com/watch?v=KhB-701-BMU

 

[justinreilly]

Amazing how a research trial with MULTIPLE, SERIOUS discrepancies in methodology; in which dangerous claims are made about efficacy and safety; which patients and supporters are extremely concerned about; and in which the medical journal who published the trial publicly attacks those concerned with the discrepancies; and in which the medical journal's ombudsman, who has a known conflict of interest because he co-authors with one of the trial authors, does not even answer complainants: is ignored, while an allegedly incorrect image from a conference presentation is treated as serious misconduct, enough to report in a large newspaper, before the facts have even been established.

I'm talking of course about the PACE trial.

Exactly! It's so disgusting.

 

[justinreilly]

When are folk gonna wake up and realize any damn positive research into ME is going to be deliberately sabotaged, researchers' reputations ruined, etc, hm?

Very powerufl people want all this to GO AWAY.

I agree. Anyone else who dares to do real science on ME, to one extent or another, is subjected to unwarranted obstacles, pressure and attacks. The level gets ratcheted up for the people making the most progress or doing the best science such as Dr. DeFreitas, Dr. Mikovits, Annette Whittemore. Anyone, anyone's work and any relationship could potentially start showing some cracks if subjected to all those unwarranted pressures. So let's bear that in mind when evaluating WPI and Dr. Mikovits.

 

[justinreilly]

Please, there is no cover-up or conspiracy going on in this case. Stop connecting non-existent dots.

In retrospect, Coffin and many others actually deserve an apologize from the many people that tried to discredet his motives and attack his character. And while I really hate to say this because of the awareness she brought to ME/CFS research, Mikovits seems the one to blame here.

Mikovits is sometimes too strident, imo. But Coffin and others behavior is worse. They get no apology; give me a break.

Mikovits and WPI are laboring under unfair prejudice. That alone seems clear to me. No one can say for sure there is no conspiracy operating here; it would certainly be consistent with the history of ME if there were.

 

[SilverbladeTE]

Justinreilly

exactly!
When is it normal for researchers in one area to get so much damn flak?

And, for conspiracy, Gulf War Syndrome damn well proves huge conspiracies from the very highest levels exist in the medical arena.

Likewise you can bring in the nuclear test veterans, asbestos, miners and many others who for one reason or another, threatened the Establishment's calm, and were thus denied fair attention and respite. Instead of eagerly aiding research into these early on, many govermments deliberately stymied research simply by "weighting" how research was funded/approved...or the results hidden under the "Offical Secrets Act" etc.
And then when the evidence was scientifically undeniable, the bastards made damn sure to fight tooth and nail, a war of attrition, so most of the poor sods would be dead of their illnesses before any compensation could be claimed.
All of which utterly tarnished the reputation of fair democratic government, impartiality of science or more often that honest research was being muzzled, and actually ended up costing MORE money in the end than compensation would have.

If folk want more proof of very evil conspiracies, not "silly" ones, real ones that have been caught out, see the bio, chem and nculear weapons test experiments carried out on unwitting military and civilians alike, in the *WEST*, never mind their Iron Curtain counterpart's lunacy in that area. The Clintons while in Administration had to apologize in public for some of those horrible events as it had taken up to 50 years for them to be exposed.
How long will it take for folk to see the truth behind our experience, hm?
With government abuses, the "paper trails" are there, but with Big Business it's much harder to find records left to uncover crimes and aportion blame. It's quite deliberate, Corporations (as they are now) were designed as a means of avoiding blame and responsibility, so they cna get away with any act.
Exactly how many CEOs have you heard of being executed or jailed for full life for mass deaths resulting from their criminal activities in the boardroom? Um, none?

Now we know about Tuskegee and Guatemala syphilis experiments, what the hell else have those evil sucm done that we don't know of, hm? These horrors are only exposed by accident or the hard work of some usually denigrated and screwed over investigator, or some whistleblower who often ends up blackballed etc.
Folk call such "crackpots" and "nuts" until the weight of public oppinion goes against them, blech.

This does not mean that their is a conspiracy against ME, no, but it does mean it's entirely POSSIBLE, though, folks.

Look at how Mikowitz etc have been handled by the media, look at how the "Weasels" are involved with Science Media Centre etc.
The assholes who were once involved in the massive psychological warfare and public manipulation systems of the Cold War years, moved on into the private sector, where as the ex-Soviets ended up selling WMD on the black market, our creeps have been working with Big Business on how to con you even better
The WORST and most deadly Weapon of Mass Destruction, is the manipulation of the mind.

 

[Esther12]

People on the other forum are rude. I often don't like it, but they have been on the right side of the science consistently.

I like the other forum.

And they are right about the science.

They've spent the last couple of days arguing that two clearly identical sets of results were really different. How can anyone still take their pretence of scientific analysis seriously? It's like kids playing at being fireman: quite a lot of fun, but you really shouldn't send them in to a burning building. Even kids can play 'spot the difference'.

re Conspiracies: Lots of bad things happen in the world. Very often powerful people are willing to harm the weak. There are lots of examples of corruption, and dishonesty. CFS has been very badly treated, sometimes in ways which could be considered as a type of conspiracy. But I don't see any conspiracy around XMRV. The heightened tensions and controversy around CFS may have played in to things and how they were presented, or led to Mikovits being more strident than other scientists thought was acceptable, but it does not seem to have affected the virology, or the results from the BWG. I don't see any sort of 'conspiracy' taking place around XMRV.

 

[Angela Kennedy]

They've spent the last couple of days arguing that two clearly identical sets of results were really different. How can anyone still take their pretence of scientific analysis seriously? It's like kids playing at being fireman: quite a lot of fun, but you really shouldn't send them in to a burning building. Even kids can play 'spot the difference'.

re Conspiracies: Lots of bad things happen in the world. Very often powerful people are willing to harm the weak. There are lots of examples of corruption, and dishonesty. CFS has been very badly treated, sometimes in ways which could be considered as a type of conspiracy. But I don't see any conspiracy around XMRV. The heightened tensions and controversy around CFS may have played in to things and how they were presented, or led to Mikovits being more strident than other scientists thought was acceptable, but it does not seem to have affected the virology, or the results from the BWG. I don't see any sort of 'conspiracy' taking place around XMRV.

Esther, come one now! There were varying opinions (including my own "don't know- thought they seemed different" which was a perfectly rational position to take bearing in mind the inconsistencies and fuzziness going on). Don't generalise fallaciously please.

How many times have you got things wrong? Lots. By your logic nothing you say re science can ever be taken seriously, you are highly discredited, as INDEED is any scientist who ever got something wrong. That is plainly absurd.

Use of the term 'conspiracy' - makes people with understandable and legitimate objections sound paranoid. That is wrong.

 

[Esther12]

There were varying opinions

You're right, I should have been clearer - by 'they' I was referring to the most prominent 'scientific experts' of that forum, who had been arguing that the results were from different tests. I had seen some there arguing that this was stupid, even if they seemed to get drowned out. I had been replying to two posts who spoke of the forum in a unified manner, so I continued that without clarification.

re the word conspiracy's association with paranoia: This leaves plenty of room for fun and games. 9/11 was a conspiracy, and of that there can be no doubt.

 

[ukxmrv]

Not fair, UKXMRV! Whan has everyone here ever been unanimous on ANYTHING?

I do think there were at least a couple of well designed studies. I don't quite understand about giving equal weight to CFS and prostate cancer, since they (at least, the ones I think we're talking about) were ME/CFS studies, not prostate cancer studies. But if I were to cite my nomination for a study that meets your criteria, I'm guessing you'd disagree

My suspicion is that you simply cannot name a study or defend the methods that they used, that others here did not do a well reasoned critique of at the time.

It's not to do with if I agree or not, it may be that the study was not well designed or that the researcher said XMRV was dead for CFS but at the same time didn't comment on their own prostate cancer study done under different methods.

Patients made well critiqued comments about specific studies and at the time few bothered to argue about them or prove them wrong. I'm not saying that everything said was right or in the right way.

You want blame the patient but when it comes down to the specifics you strangely silent. How many were them, how many times did it happen? Once was it unfair, 5 times? Who exactly are you defending here - Myra McClure?

Maybe criticising the scientists and the researchers was right all along. Maybe it was in 80%. You need to be more specific or it sounds as if using the old frozen samples from Simon Wesselly's psych clinic was a good idea and the patients who spoke up about it wrong or bad in some way.

 

[currer]

Hi Esther,

When I said that "the other forum" are right about the science, I mean that they understand that a retroviral etiology is the strongest hypothesis for ME and one which unifies all the diverse findings.

They also understand the political forces which could act to suppress this science.

 

[Esther12]

Hi Esther,

When I said that "the other forum" are right about the science, I mean that they understand that a retroviral etiology is the strongest hypothesis for ME and one which unifies all the diverse findings.

They also understand the political forces which could act to suppress this science.

But that commitment led to many of them pretending that two identical images were not the same - and that it was a conspiracy claiming otherwise! That's not being right about the science, or understanding how political forces suppress science, it's just twisting the science to fit a preconception. Hopefully real science will progress, and we'll soon be close to knowing what does cause ME.

 

[Angela Kennedy]

But that commitment led to many of them pretending that two identical images were not the same - and that it was a conspiracy claiming otherwise! That's not being right about the science, or understanding how political forces suppress science, it's just twisting the science to fit a preconception. Hopefully real science will progress, and we'll soon be close to knowing what does cause ME.

That's not accurate either. Some people argued they were the same. Some argued they were different. Others (like me) were, rightfully, more concerned about the unsubstantiation of the images and the inflammatory and defamatory way this discrepancy was made public by Abbie Smith (a massive contextual issue). If that's a conspiracy theory to you- well that depends how you are using the term 'conspiracy': to discredit people who raise those issues, or acknowledge their concerns are legitimate.

It's a forum with a mixture of opinions.

 

[Esther12]

That's not accurate either. Some people argued they were the same. Some argued they were different. Others (like me) were, rightfully, more concerned about the unsubstantiation of the images and the inflammatory and defamatory way this discrepancy was made public by Abbie Smith (a massive contextual issue). If that's a conspiracy theory to you- well that depends how you are using the term 'conspiracy': to discredit people who raise those issues, or acknowledge their concerns are legitimate.

It's a forum with a mixture of opinions.

From what I saw, it is accurate to say that many of them were pretending that the images were not the same, and that there was some sort of conspiracy/fraud being perpetrated against Mikovits by those who claimed otherwise. Simply being concerned about the lack of official comment or confirmation is not the same as saying that you think the release of those images was an orchestrated fraud against Mikovits - which is what was being claimed on the other forum yesterday, and was unreasonable given the available evidence then, and even more so following the comments from Mikovits and Ruscetti in Science today.

It's a forum of a mixture of opinions but, at least yesterday, it seemed dominated by those with some very peculiar ones. The way in which it was argued that those results were from different tests was utterly bemusing, and should undermine anyone's willingness to trust the claims of virological expertise coming from those responsible. The Emperor has no clothes - and he don't look pretty.

 

[Cort]

Somebody thought there was a conspiracy against CFS? Sorry I missed that. Love a good real-life conspiracy.

Dr Kenneth Friedman is my favorite conspiracy theorist. I don't think he calls it a conspiracy though. Basically he gives a personal account of how his under investigation for trying to educate students about ME/CFS.

Here is a video of him talking about his experience, or whatever you want to call it.

http://www.youtube.com/watch?v=KhB-701-BMU

That doesn't have anything to do with retrovirologists for some reason not trying to find a virus many of them could have studied for the rest of the their careers. I talked with one researcher who said "my career was set - I was going to spend the next 10 years studying this virus'.

The conspiracy theory NEVER made sense (unless you thought for some reason that retrovirologists wanted to sabotage their future career in order to get at disorder that most of them probably knew nothing about and certainly didn't care anything.)

 

[currer]

Well I think they could still investigate this virus.

I would be glad for someone to put in ten years research on the connection between HGRVs and ME.

Unfortunately it looks as if all our worst fears will be confirmed, and a flimsy pretext will be found to prematurely pull the plug on this research.

That doesn't have anything to do with retrovirologists for some reason not trying to find a virus many of them could have studied for the rest of the their careers. I talked with one researcher who said "my career was set - I was going to spend the next 10 years studying this virus'.

The conspiracy theory NEVER made sense (unless you thought for some reason that retrovirologists wanted to sabotage their future career in order to get at disorder that most of them probably knew nothing about and certainly didn't care anything.)

 

[Cort]

Well I think they could still investigate this virus.

I would be glad for someone to put in ten years research on the connection between HGRVs and ME.

Unfortunately it looks as if all our worst fears will be confirmed, and a flimsy pretext will be found to prematurely pull the plug on this research.

For me, I think you know I think XMRV is over but I hope to God that Dr. Mikovits gets the opportunity to determine whether she's correct or not - simply so that we can have some closure. Its amazing how this issue has ripped the 'community' apart. I would love to have everyone agree on it - maybe that's a pipe dream, I don't know.