Chicago Tribune: Manipulation alleged in paper linking virus

[Esther12]

It is odd to me that many of you are attacking Trine Tsouderos instead of acknowledging the much bigger problem at hand here. Sure her articles do not show CFS in the best of light but that is what the scientific community at large thinks about CFS and patients are not helping that by making illogical vile comments on every article. The more Dr. Mikovits made personal attacks on others that digressed with her instead of reaching out to them the more it polarized the scientific community against CFS and XMRV. Disagreement and debate in science is great, attacking others because they disagree with you in a whole different story. I have had major issue with the way the WPI and Mikovits have been handling XMRV for sometime now and I knew it would come to a breaking point, but I didn't think it would be this bad.

I am happy Trine used restraint and picked the quote she did from this forum, it could be way worse if she used some of the other comments. If you just look over at some other science blogs, that I will not name, you can see many scientist think CFS is a joke in large part because of the actions and comments of fellow CFS patients and Mikovits. They have gone to CFS forums to check it out and see the absolutely insane, illogical, and bizarre comments and assume all people with CFS are like that. If I did not know anything about CFS or did not have it myself and saw some of the comments by CFS patients I would have a hard time not thinking there is something mentally wrong with them.

There's a lot of that which I think it true - but I also agree with Bob that those who allow themselves to pick up prejudices about CFS patients from just reading a few heated forum threads are not the sort of people terribly worthy of our respect.

Unfortunately, they are the sort of people who make up about 95% of the human race.

Given the poor way in which those with CFS are commonly treated, I expect that we are relatively likely to be driven to some sort of madness. While studies seem to indicate that those with CFS are no more likely to suffer from mental health problems than those with MS, I expect that there is a type of madness which we can be pushed towards by the common experience of being mistreated by those we thought we could trust at our time of greatest need. Maybe it doesn't lead to any officially recognised disorder, but I think that it must mess us up a bit.

It's easy for others to come along, see how angry and suspicious we seem, and assume that CFS is a psychological disorder, rather than acknowledge the intense and confusing hardships which CFS and the way it is often treated can impose. As a species, we like to blame others for their own suffering - it's comforting - and I think that CFS patients have been a real victim of this. I'm sure that we could behave in a way which reduced this problem - but having to manage the prejudices of others is quite a burden to take on: there are always going to be people who believe barmy things and write about them on the internet. Given the uncertainty that surrounds CFS, there's more room for us to go wrong as we attempt to understand our own lives than there is for most others.

(I'm starting to ramble - it's been a long day, and I need to get offline.)

(edit: Seeing as so many of the problems surrounding CFS relate to the way some choose to presume that chronic fatigue syndrome should be treated as a psychological disorder, I rather regret talking so casually of 'madness'. I think I'm rather too tired to deal properly with this topic though).

re Jamie Deckoff-Jones latest: It's a fair point, questioning why on earth Mikovits would misrepresent her results, and then reuse her own slide showing people what she had done. I don't see the motivation for altering results in the first place, never mind re-using the image of those results (which surely you would feel nervous about) in a later slide - she must have had access to loads of results like these! If it was fraud, it could easily have been done so much more competently. Hopefully we'll get an official response soon.

 

[Cort]

LJS wrote: "I am happy Trine used restraint and picked the quote she did from this forum"

I'm not happy witht he quote that Trine chose to use - it was representative of only a percentage of views - it was very disengenous of her to use it to 'represent' ME sufferers views on forums - but of course - it supported Trine's agenda.
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I can't believe what I am reading here in favour of ERV and Trine Tsouderos and their recent publications.

Staggering.
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Here in Britain we recognise media manipulation when we see it.

There is a range of media views on XMRV and Dr. Mikovits here in the US - that is what is different. There was the largely positive reviews early on in the NYT's, the more favorable or more neutral views of the WSJ, and the more heated view of Trine. From the beginning Trine believes Dr. Mikovits has acted in irresponsible ways - I would agree and I think the fix the WPI is in is largely due to Dr. Mikovits inability to act in a way that garnered the WPI respect.

There's come a point where the media manipulation idea does not pan out. For one thing the media is after stories and the Mikovits as embattled/controversial/overthetop CFS researcher story has pushed out other possible stories such as 'underserved ME/CFS community finally gets its chance' or whatever. Whether wittingly or not Dr. Mikovits has made herself a major media story.

I find it ironic that many people got absolutely incensed over the CAA's one quote after the PACE trial while they've continued to cut Dr. Mikovits so much slack after her kind of overthetop comments. Her comment on Nevada Newsmakers that XMRV might be in mothers milk was irresponsible and caused alot of fear. Her comment that XMRV was worse than HIV/AIDS in Africa before the XMRV finding had even been validated, let alone been proven to cause any problems, cut the legs out of the WPI as a credible research institution...She got the autism community in the act with her statement that XMRV was in autism...(and now they are upset.....

You can say that she was absolutely convinced about XMRV being the cause of CFS and given that her comments made sense. You could say she was trying to warn people. If she turned out to be right or turns out to be right I imagine that would make all the difference but if you're not right and you make those kinds of statements then you're in real trouble. That is why the worst thing for most researchers to do is to overstate their results...they are cautious because science is soooo tricky as we have found out.

In the end my feeling is that she was just not the right person for the job. For that job you really need someone who can keep their mouth shut and respect scientific mores that are in place.

 

[asleep]

It is odd to me that many of you are attacking Trine Tsouderos instead of acknowledging the much bigger problem at hand here.

What's really odd is how sudden focus on these images had distracted from the truly important issue at hand: HGRV research. Unless deliberate fraud can be conclusively shown, at worst this is likely a mix-up somewhere along the line. As such the implications don't extend very far beyond the precise images in question, and they certainly don't magically invalidate the entire gallery of evidence suggesting HGRV involvement (including Lo et al). But this whole crusade is implying exactly this: that somehow a mislabeled image invalidates an entire hypothesis. This looks like science by scapegoat, science by character assassination, not science by evidence. How is such a gross distortion of logic being taken at face value?

 

[Cort]

Nor do I think she did it all for us - as she so commonly said. I think she forgot about the interests of the WPI and the CFS community in her quest to defend her discovery. She knew its taboo to talk about the results of a study prior to it being peer reviewed and published yet she did it anyway. She knew that researchers are really careful regarding things like viruses to avoid throwing the public into a frenzy yet she did that as well.

I can't think of a better way, really, to undermine the WPI than to say some of the things she did. If she had really been thinking about the long term health of the WPI and the CFS Community she would have spoken in ways that protected and furthered that but she turned it into a kind of personal battle.

In that kind of position you need someone who can keep their cool in the heat of the moment. She was not that kind of person.

 

[floydguy]

I don't recall Trine villifying the CFS community - what I remember about her articles are her taking Dr. Mikovits to task again and again - and often using Dr. Mikovits own words to do it.

I think we really miss how really controversial a figure Dr. Mikovits is in the research community

I don't know about ERV - you may be right - but I wasn't referring to her protrayal of the CFS community - which from memory is pretty poor - although my guess is that she was referring to the more aggressive members of the community. . I wonder when you look at the facts regarding XMRV how wrong she's going to turn out to be. She may have been right on all the factual aspects of XMRV.

To me vilifying the community is continuously bringing up the fact that several patients take anti-retrovirals. What really is the point of this except to cause scorn and derision from the public? She is most definitely equating CFS patients with chronic Lyme patient, anti-vaxxers and those that believe there are green men living in a military bunker in Area 51.

Once again, is it not shocking that Mikovits is being run out of town because she's not liked? Really remarkable for a bunch who are supposed to be oh so objective. I don't disagree that her colleagues hate her and possibly there are good reasons for this. Many in this community seem to be very happy to see Judy go down in flames, possibly only because she didn't play in the sandbox nicely with others or because she had a "controversial" hypothesis. Perhaps it's justified but so far I see it more as a witch burning than as an impressive collection of scientific data refuting Mikovits' and the WPI"s research. Some say this will deter people from going into CFS research. I'd say this situation deters people from going into any research. This should be an embarrassment to the U. of Oklahoma, Tufts, NIH, CDC, Hutchins Center and all the other institutions with personnel involved.

 

[Cort]

I'm just going to lay it all out!

I am happy Trine used restraint and picked the quote she did from this forum, it could be way worse if she used some of the other comments. If you just look over at some other science blogs, that I will not name, you can see many scientist think CFS is a joke in large part because of the actions and comments of fellow CFS patients and Mikovits. They have gone to CFS forums to check it out and see the absolutely insane, illogical, and bizarre comments and assume all people with CFS are like that. If I did not know anything about CFS or did not have it myself and saw some of the comments by CFS patients I would have a hard time not thinking there is something mentally wrong with them.

I agree with LJS that this is a problem. I also agree with Bob that its just a problem and that not everyone or most people view the CFS community in this way but it is a problem and its a worse problem than it was a couple of years ago.

I think the WPI failed us and them by not attempting to calm down the CFS community down and they failed us even more by fomenting some of the conspiracy theories floating around withtheir references to political forces trying to bring XMRV down or accusing researchers of not wanting to find the virus, etc.

If they had tried to put a lid on things the CFS community could have sailed through XMRV if it didn't work out with new and even positive image but now we have a mixed message; I think many people do know that CFS is incredibly underserved but some people now think we're a kind of rabid group of patients. In the end I hope we've benifitted - I think we have.

 

[Andrew]

What's really odd is how sudden focus on these images had distracted from the truly important issue at hand: HGRV research. Unless deliberate fraud can be conclusively shown, at worst this is likely a mix-up somewhere along the line. As such the implications don't extend very far beyond the precise images in question, and they certainly don't magically invalidate the entire gallery of evidence suggesting HGRV involvement (including Lo et al). But this whole crusade is implying exactly this: that somehow a mislabeled image invalidates an entire hypothesis. This looks like science by scapegoat, science by character assassination, not science by evidence. How is such a gross distortion of logic being taken at face value?

You make a very important point.

 

[ixchelkali]

Trine has been a very harsh critic of Dr. Mikovits but she is not alone and neither is ERV - no matter how hostile a blogger she is. Its hard to get past that hostility but I wonder if we went back and looked I wonder how many times she's actually wrong on the facts.

This is in no way normal in the scientific field - the degree of controversy that occurred around Dr. Mikovits has raised is very unusual....

It's not normal is the scientific field, but it's sadly far from unusual in the history of ME/CFS research. It's happened to most of the researchers who have publicly proposed a viral etiology for ME/CFS. Peterson and Chaney were characterized as self-aggrandizing quacks, Elaine DeFritas was portrayed as incompetent, fired, and hung out to dry, Sallahudin and Martin were accused of fraud. Since the Science paper made a bigger splash when it was published, I'm not surprised that Mikovits would be a bigger target.

It's certainly looking as though XMRV will prove to be a dead-end. And I'm sure that Judy Mikovits' pugnacious approach has not endeared her to colleagues. But the hatchet job from the likes of ERV and Tsouderos began almost from the moment the ink was dry on the Science paper, before there were good studies refuting the findings.

I believe that Tsouderos and ERV are part of the "they're-all-a-bunch-of-crazies" press that has been working to discredit ME/CFS sufferers for 25 years. Whether there are moneyed interests behind that is an open question. Who knows, maybe they truly believe we're all mental cases. But whatever the motivation, I believe that their attacks are less directed at Judy Mikovits and more directed at anyone who looks like they might prove that ME/CFS is a biomedical disease, especially one with a viral cause. That is to say, their attacks are meant to discredit ME/CFS patients. And when you suggest, however loosely, that their comments may have been correct or justified, I will have to disagree. When it comes to guessing whether XMRV would be the cause of ME/CFS, anyone had a 50/50 chance of being right, whichever they chose; but that doesn't excuse the nastiness, ugliness, and innuendo that Tsouderos and ERV direct against ME/CFS patients. And either should you, in my opinion.

 

[Cort]

To me vilifying the community is continuously bringing up the fact that several patients take anti-retrovirals. What really is the point of this except to cause scorn and derision from the public? She is most definitely equating CFS patients with chronic Lyme patient, anti-vaxxers and those that believe there are green men living in a military bunker in Area 51.

Once again, is it not shocking that Mikovits is being run out of town because she's not liked? Really remarkable for a bunch who are supposed to be oh so objective. I don't disagree that her colleagues hate her and possibly there are good reasons for this. Many in this community seem to be very happy to see Judy go down in flames, possibly only because she didn't play in the sandbox nicely with others or because she had a "controversial" hypothesis. Perhaps it's justified but so far I see it more as a witch burning than as an impressive collection of scientific data refuting Mikovits' and the WPI"s research. Some say this will deter people from going into CFS research. I'd say this situation deters people from going into any research. This should be an embarrassment to the U. of Oklahoma, Tufts, NIH, CDC, Hutchins Center and all the other institutions with personnel involved.

Trine represents, I think, a part of the media that is devoted to uncovering what they believe to be weak science. They heartily believe that by exposing these problems they are doing the patients a favor. While she does verge on protraying Dr. Mikovits as being unbalanced.....I don't remember her doing that at all to CFS patients - I would have to go through her articles and see.

That was an interesting comment about being controversial. Thinking about it my guess is that it may not possible to be controversial and be an effective director of a research institute (???) (unless you happen to be right )

 

[Enid]

I find that a strange comment Cort at post 66 - we are permanently flooded with disaster scenarios - whether too coffee - risks of this that or another and now increased risk of mental health from certain occupations - you name it - not much left to eat around anymore too.!. And surely Dr Mikovits as a scientist is not looking over her shoulder to protect whatever interests of a WPI "community" but pursuing pure science - which is the way it must be to advance.

 

[Cort]

It's not normal is the scientific field, but it's sadly far from unusual in the history of ME/CFS research. It's happened to most of the researchers who have publicly proposed a viral etiology for ME/CFS. Peterson and Chaney were characterized as self-aggrandizing quacks, Elaine DeFritas was portrayed as incompetent, fired, and hung out to dry, Sallahudin and Martin were accused of fraud. Since the Science paper made a bigger splash when it was published, I'm not surprised that Mikovits would be a bigger target.

It's certainly looking as though XMRV will prove to be a dead-end. And I'm sure that Judy Mikovits' pugnacious approach has not endeared her to colleagues. But the hatchet job from the likes of ERV and Tsouderos began almost from the moment the ink was dry on the Science paper, before there were good studies refuting the findings.

I believe that Tsouderos and ERV are part of the "they're-all-a-bunch-of-crazies" press that has been working to discredit ME/CFS sufferers for 25 years. Whether there are moneyed interests behind that is an open question. Who knows, maybe they truly believe we're all mental cases. But whatever the motivation, I believe that their attacks are less directed at Judy Mikovits and more directed at anyone who looks like they might prove that ME/CFS is a biomedical disease, especially one with a viral cause. That is to say, their attacks are meant to discredit ME/CFS patients.

To me this is the big danger at this point as XMRV fades. Are we going to embrace the scenario where harsh critics of well-liked researchers are simply out to refute the idea that ME/CFS has biological origins and discredit CFS sufferers or are they more focused on what they believe to be poor science? I believe the later; I know it can be hard to disentangle the two but I think the critiques are based on recent findings that the media has gotten interested in and not in a desire to discredit people with CFS.

 

[floydguy]

Trine represents, I think, a part of the media that is devoted to uncovering what they believe to be weak science. They heartily believe that by exposing these problems they are doing the patients a favor. While she does verge on protraying Dr. Mikovits as being unbalanced.....I don't remember her doing that at all to CFS patients - I would have to go through her articles and see.

Perhaps but the problem remains who is the DECIDER on what weak science is. There's a lot of weak science regarding PACE, anti-depressants, etc. but I don't see Trine, ERV et al demanding more accountability in these areas. We all know who the deciders are: insurance companies, pharma and others that want to control public and private $ going to areas that benefit them. Trine et al are happy to go along so that they can win "journalistic" awards and get trips to Hawaii, bring $ to University research, etc.

 

[Cort]

I find that a strange comment Cort at post 66 - we are permanently flooded with disaster scenarios - whether too coffee - risks of this that or another and now increased risk of mental health from certain occupations - you name it - not much left to eat around anymore too.!. And surely Dr Mikovits as a scientist is not looking over her shoulder to protect whatever interests of a WPI "community" but pursuing pure science - which is the way it must be to advance.

As I see it Dr. Mikovits had two roles at the WPI. Dr Mikovits is a scientist and she was pursuing 'pure science' at the WPI but she also had a role as the Research Director of the WPI, and ultimately the face of the organization, she also had the responsibility to maintain and improve its reputation. What I'm proposing was that as soon as she starting acting defensively - which she did when she began stating things that were not in the Science journal paper and making comments that in retrospect were problematic - she stopped being a guardian of the WPI's reputation. In those moments the WPI's reputation was not uppermost in her mind. At those moments she was more concerned with something else.

We're all human beings; she was under alot of pressure and she had never lead an organization before and never been in such an environment before. Perhaps it would have been more surprising if she had done everything right.

She can be a great scientist and still be a failure as a leader of an organization; those are two very different jobs and I think she was not well-suited to the second.

 

[ixchelkali]

It is odd to me that many of you are attacking Trine Tsouderos instead of acknowledging the much bigger problem at hand here. Sure her articles do not show CFS in the best of light but that is what the scientific community at large thinks about CFS...

Articles like Trine Tsouderos' are a big part of the reason why "the scientific community at large" doesn't have an accurate picture of ME/CFS. Letting her remarks stand without answering them isn't the answer, IMO. Her stories are incredibly biased and should be called out as such. Nor do I think that patients should self-censor their remarks on patient forums, lest they sound weird or wacko to any scientist who might decide to drop in on the patient forums, or in case their remarks might be cherry-picked by the likes of Trine Tsouderos as representing the views of all patients.

That being said, I do think that Tsouderos and others like her sometimes make intentionally provocative remarks, a sort of patient-baiting, to try to elicit responses that will sound loony to the general public.

 

[Cort]

Perhaps but the problem remains who is the DECIDER on what weak science is. There's a lot of weak science regarding PACE, anti-depressants, etc. but I don't see Trine, ERV et al demanding more accountability in these areas. We all know who the deciders are: insurance companies, pharma and others that want to control public and private $ going to areas that benefit them. Trine et al are happy to go along so that they can win "journalistic" awards and get trips to Hawaii, bring $ to University research, etc.

You have a very good point. PACE trial unfortunately never came under the scrutiny that XMRV has probably because its not such a hot button topic - the PACE findings and the CBT scenario, which has been around for a long time, has been more embraced by the media - although not totally embraced for sure.

I agree its not fair. The PACE trial should have been dissected by the media and researchers ad nauseum but I imagine if a reporter said she wanted to do an in-depth analysis of it to her editor - he would have said no. On the other hand a retrovirus is a hot topic. One goal that I can see is getting enough coverage of CFS that things like that do happen - that things like an over-hyped PACE trial are news worthy stories.

 

[Parismountain]

I don't like the gloating over Dr. Mikovits' demise. I know most of us patients with ME/CFS can relate to ostracism but we are not acquainted with the unique ostracism afforded a researcher who chooses to delve into our disease. I think that's one of the things that endeared Dr. M to us in the first place, she believed us and "got it".

I'll take one thing away from this debacle, on the day she was let go I caught her in Google chat and had a short but nice conversation with her. Her accessibility was amazing, probably to her detriment though. She mentioned working on finding a place to continue her study. Don't put me on a jury and show me facts about a theory that Dr. M is a concocter, I'll acquit her yesterday, today and tomorrow.

Cheers Dr. Mikovits and wishing a thousand more fervent researchers willing to wear fingernails down to the bone to get to the bottom of this dd.

 

[Enid]

Cort @ post 75 - well science and discovery has to come first.

 

[currer]

Hi everybody.

The point that has been lost here is that the only person with a commitment to doing serious research on the CAUSES (not symptoms) of ME is Dr. Mikovits.

Her research led to the first chance of finding a cause for ME, one that could be treated.

I want to see that research properly and fully followed through.

All the discussions I have read here that comment on personalised issues, who said what, when, how they said it etc etc is quite beside the point and I am ashamed to read this rubbish.


It is cheap and surely it is below us.

Dr Mikovits is a scientist not a public relations officer. You have the temerity to judge her, and on an entirely false standard.

Is it old fashioned to believe that people here should show some gratitude for the commitment Dr Mikovits has given us?

The science is still good, despite what has been posted above, and deserves to be continued, not prematurely curtailed. HGRVs and their effect on human health need to be given the time to be investigated properly.

Dont people here realise that science is a prolonged and difficult process and that science takes time?

Do we live in such an infantilised society that people expect instant results from even the most difficult task and are prepared to vilify and turn on those who cannot provide immediate gratification of their wishes?

 

[Cort]

I agree that such claims were unprofessional, insulting, and damaging to WPI's reputation as a responsible research institute. I really, really wish Dr M and the Whittemores had been more professional all around.

However, they are not responsible for calming down the patient community. They don't own, organize, or control us in any way. We, as individuals are responsible for how we react, not WPI or Dr M. To blame them for the reactions of some loud-mouthed and undocumented patients is patently unjust.

Um.... let's put the blame where it belongs. WPI and Dr M never cast us as "a kind of rabid group of patients". That was done primarily by the media with support from the likes of ERV, Wessely, Reeves, and even, sadly, Dr Coffin with his Joan of Arc crack. They have used the flaws of a research organization to paint the entire patient population as equally (or more) flawed. Bad logic and extremely damaging to our cause.

If these self-proclaimed media champions of ours really believed in the reality and seriousness of ME/CFS, they would be writing stories about how ME/CFS is so poorly served that we cling to the tiny bits of hope offered us. Instead, they cast us as unscientific, emotionally unstable sheep. Their perspective is not particularly well hidden, even if it's not overtly expressed -- just like all other kinds of prejudice.

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

 

[Wildcat]

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Currer wrote: "The point that has been lost here is that the only person with a commitment to doing serious research on the CAUSES (not symptoms) of ME is Dr. Mikovits.

Her research led to the first chance of finding a cause for ME, one that could be treated.

I want to see that research properly and fully followed through.

All the discussions I have read here that comment on personalised issues, who said what, when, how they said it etc etc is quite beside the point and I am ashamed to read this rubbish.


It is cheap and surely it is below us.

Dr Mikovits is a scientist not a public relations officer. You have the temerity to judge her, and on an entirely false standard.

Is it old fashioned to believe that people here should show some gratitude for the commitment Dr Mikovits has given us?

The science is still good, despite what has been posted above, and deserves to be continued, not prematurely curtailed. HGRVs and their effect on human health need to be given the time to be investigated properly.

Dont people here realise that science is a prolonged and difficult process and that science takes time?

Do we live in such an infantilised society that people expect instant results from even the most difficult task and are prepared to vilify and turn on those who cannot provide immediate gratification of their wishes?"
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WELL Said, Currer! I agree.

I am shocked by some of the statements here.

Media and Blog Babes such as ERV and Trine do not represent our best interests. They never have
.