Nature article about Judy Mikovits and XMRV

[dannybex]

Check out Ann's post...

Hi SilverBladeTE,

Check out Ann's post (I think #51) on page 6 of this thread. She was interviewed for this article and believes the author is on the up and up.

 

[insearchof]

Hi Dannybex

It matters not what intention the journalist had. Most of those of us who have concerns about articles we have seen lately, are with a failing to engage the skills, which we now understand thanks to meadowlark here, are customarily employed by a fact checker-so as to correct errors and misleading perceptions. When that is not done or done poorly, it creates problems, which I think is fair to say, has a negative impact both within the ME CFS field as well as outside ie: general public.

 

[dannybex]

Hi Insearchof,

I appreciate your input and Meadowlark's as well. But again, Ann, who was a part of the article and interviewed by the author, doesn't seem to be concerned with the outcome. I would also refer you to JenBooks comment #70.

 

[insearchof]

Hi Insearchof,

I appreciate your input and Meadowlark's as well. But again, Ann, who was a part of the article and interviewed by the author, doesn't seem to be concerned with the outcome. I would also refer you to JenBooks comment #70.

Hi Dannybex

I am sure Anne isn't the only one who feels that way, but there are many others who feel otherwise. I read Jenbooks comment, but Im sorry Dannybex, it did not do much to alleviate my concerns about the quality of articles appearing of late. I think you need to assess each article on it's merits and irrespective of whether a fact checker is or is not employed....as they also get it wrong from time to time, as the complaints files of media watch dogs/authorities can attest to.

If my memory serves me, Meadowlark, prior to I'll health, was employed as a writer/ fact checker.His contribution to this thread is a few comments back and suggests counter to Jenbooks remarks, that fact checkers were generally regarded as superfluous in some publishing sectors (ie: science, where journalists have scientific backgrounds) in tough economic times. Ie: GFC

Did/does Nature employ a fact checker for that piece? I don't know-but It's not relevant, because where errors/ misleading inferences, unfairness, bias etc can be shown to have arisen from any article (not necessarily this one) on this or any subject matter - that are thought to be damaging (for various reasons), then whether an article was or was not fact checked is not relevant or a deterrent to lodging a formal complaint.

The bottom line is, if you feel that it infringes journalistic and media ethical codes, that's the end of the story.....but it is up to the public to lodge complaints to ensure publications are more careful in the future.

As a side note, these issues should be addresses initially by setting these matters out in a letter to the Editor, to see if any damage done can be remedied and where there is no satisfactory or prompt response, to move towards a more formal complaint to relevant media watch dogs.

 

[currer]

I'm going to add my twopennyworth here!

First, I put a post up earlier and then deleted it because I was afraid it might seem critical of Ann and I did not want that.
The point is that most English journalism is of poor quality and leaves a bad taste in the mouth. our press are cynical and muck-raking and any English journalist nowadays will come from that culture and bear the marks of it, even a journalist for Nature.
My brother has been a subscriber to Nature for thirty years and he has noticed that the standard of writing has deteriorated recently.
When I read the Nature piece I felt it subtly undermined Dr. Mikovits and revealed an unpleasant bias, as others have posted here. I did not feel the piece was of a standard I would expect from a journal with Nature's reputation.
American newspapers tend to write fairer and more balanced pieces. On this forum, you must have noticed how poor the media are in Britain. What in-depth investigative journalism have we seen come out of Britian on ME/CFS? And we are the proud posessors of the Science Media Centre!

Don't believe everything you read in the papers, especially if they are British.

Secondly, I do not like to read the criticism of the WPI that has been posted here. I understand that everyone has a right to their opinion, but my feeling is that the WPI have been immensly brave in publicising their XMRV findings. The consequence of this bravery is that they open themselves to criticism but I feel as we are the patients they are set up to help we should support them. Who else is going to help us? Be realistic!
And I don't mean that we should support them uncritically, but that we must understand that scientific research carries the risk of mistakes and controversy.Think of the uproar over the discovery of HIV.
We have to accept there may be mistakes and that is the price of being brave enough to devlop a new paradigm and test it.
We have been stuck for thirty years. We need someone to shake up all the thinking on ME/CFS.

FWIW I think XMRV and the other MLVs are going to prove to be medically significant, and if not for ME/CFS then most likely for autism.
Believe me, there are many vested interests which would aim to discredit this research.
We have to wait and see how the research continues. People expect that answers can be provided too quickly The controversy could go on for years until a real answer emerges.

 

[In Vitro Infidelium]

MOD WARNING: Please tone things down In Vitro and Sleepy. Some of this language is getting inflammatory, we need to discuss the ideas without personal attacks and insults.

In Vitro, I understand your points but your post was inflammatory. Nobody here or at WPI is a tin foil hat idiot... just not smart to make comments like that on this board.

I'm confused by this. I didn't direct any criticism or insult at or about any individual or group of people, what I wrote was: to claim, without any prior evidence that ME/CFS, fibromyalgia, atypical MS, and autism are collectively of common cause or are in some way inherently related, is sheer tin foil hattery. Is that not a valid observation ? Should I have used some other terminology ? Would 'crank science', or 'pseudo science' or Science woo be any less 'insulting' ? Yet all of those terms appear appropriate to describe 'a definitive claim using scientific language, that is unsupported by any evidence'. I fully accept that posts should be civil, but does that mean that certain ideas, concepts and beliefs are exempted from harsh judgement ? I suspect that if I'd written that Simon Wessely's psychiatry is 'sheer tin foil hattery', no one would have got upset and there would be many supporting posts, so I don't see a Forum standard to follow.

IVI

 

[Angela Kennedy]

I'm confused by this. I didn't direct any criticism or insult at or about any individual or group of people, what I wrote was: to claim, without any prior evidence that ME/CFS, fibromyalgia, atypical MS, and autism are collectively of common cause or are in some way inherently related, is sheer tin foil hattery. Is that not a valid observation ? Should I have used some other terminology ? Would 'crank science', or 'pseudo science' or Science woo be any less 'insulting' ? Yet all of those terms appear appropriate to describe 'a definitive claim using scientific language, that is unsupported by any evidence'. I fully accept that posts should be civil, but does that mean that certain ideas, concepts and beliefs are exempted from harsh judgement ? I suspect that if I'd written that Simon Wessely's psychiatry is 'sheer tin foil hattery', no one would have got upset and there would be many supporting posts, so I don't see a Forum standard to follow.

IVI

Are you saying Simon Wessely's psychiatry is 'tin foil hattery'? If yes, why? If not, why?

What's a 'tin foil hattery'? It's a very specific term, different to the ones you used (as conceptually problematic as THOSE ones are themselve notwithstanding). For that reason- you can't predict with accuracy what people's responses to you would be. I would have immediately questioned you exactly as I have just done, for example. Others here too, based on previous interactions.

Insulting hyperbole (let's face it- I'm sure you cannot really mean 'tin foil hattery' literally) is indeed not a 'valid' term. It obscures meaning and is intended as an insult (you didn't mean it as a compliment), and distracts from any chance of rational debate.

Obviously Science woo and pseudoscience are themselves highly problematic, unstable constructs, bandied about as insults rather than accurate descriptions of problem claims. Your way of constructing an argument is too redolent of 'Bad Science'-type 'stock' ad hominem insult and inconsistent 'skepticism', and this is why you are being called on certain comments you are making.

I don't know if you are a deliberate agent provocateur- or merely unreflective about your writing and the problems of inconsistency in certain manifestations of so-called 'skepticism' nowadays. But your language is rhetorical and inflammatory and sometimes fallacious- so if you are aiming for validity in your arguments- you need to avoid that.

 

[SilverbladeTE]

since ABOSLUTELY NO ONE knows the actual causes of "ME/CFS, fibromyalgia, atypical MS, and autism" then yes, they COULD be linked
Science is about probabilities, not "truth"
each of those has serious neurological issues, we don't know their causes, thus suggesting a link is not impossible, especially as the WPI had been doing research into such, is therefore not "tin foil hattery", in fact, it is good scientific theory.
Theories require facts though and a lot of testing.

Just so folk get this, the one MASSIVE underlying caveat of Science is:
"These are the facts and theories as we know them today, these may change in the light of further evidence being discovered"
absolutely no damn room for dogma or complacency in science.
WPI maybe wrong, hell the Weasels much as I loathe them, maybe right
though odds in latter case arguably 2 to the power 3000 against! which is a very very VERY remote chance indeed, but it's sitll not impossible, which is the difference between Science and Science-used-as-a-disguise-for-quasi-religious-zealoty-for-those-who-demand-CERTAINTY!

 

[Sing]

We are witnessing and revealing our human proclivities through both the scientists and our reactions, and these have to do with political, cultural, psychological, egotistical factors which are influencing the attempts at staying true to the fine lines of scientific research. That is all that is happening here. We need to do our best to stick to the truth--established facts and truthful processes--while we strongly support those who are working on our behalf.

 

[asleep]

If everyone -- Mikovitz, Sliverman, Petersen -- don't object, then we probably need to accept that the author represented them fairly.

I don't think that this is the most appropriate metric for assessing the validity of this article's representation. It's certainly likely that some or all of these individuals don't have the time to formally complain about such articles. If they do complain, that says a lot, but if they don't complain, I don't think much can be legitimately read from that.

 

[Cort]

We are witnessing and revealing our human proclivities through both the scientists and our reactions, and these have to do with political, cultural, psychological, egotistical factors which are influencing the attempts at staying true to the fine lines of scientific research. That is all that is happening here. We need to do our best to stick to the truth--established facts and truthful processes--while we strongly support those who are working on our behalf.

I agree. Researchers are people too...I was fine with the article - it seemed to present both side of Dr. Mikovits; the tendency to wear her emotions on her sleeve (the 'garbage Christmas' quote) and the compassionate, committed side of her as well. Hey, she's a colorful figure! She's not your typical faceless researcher type .

 

[SOC]

I don't think that this is the most appropriate metric for assessing the validity of this article's representation. It's certainly likely that some or all of these individuals don't have the time to formally complain about such articles. If they do complain, that says a lot, but if they don't complain, I don't think much can be legitimately read from that.

I agree with you overall. I overstated the case somewhat in search of conciseness. My thought was that some of the ideas attributed to Mikovitz and others by this author were quite strong and previously unreported. Because those ideas were published in a highly respected journal read by their professional colleagues, Petersen and the others would be more likely to refute them than if such statements were published in the popular press. That is an unstated assumption on my part and is not necessarily true.

So yes, we can't be certain that if those individuals don't respond the info is true. Let's say it's somewhat more likely to be true if the individuals don't disclaim the ideas/thoughts attributed to them.

Thanks for calling me on that -- it was indeed inaccurate.

 

[kurt]

I'm confused by this. I didn't direct any criticism or insult at or about any individual or group of people, what I wrote was: to claim, without any prior evidence that ME/CFS, fibromyalgia, atypical MS, and autism are collectively of common cause or are in some way inherently related, is sheer tin foil hattery. Is that not a valid observation ? Should I have used some other terminology ? Would 'crank science', or 'pseudo science' or Science woo be any less 'insulting' ? Yet all of those terms appear appropriate to describe 'a definitive claim using scientific language, that is unsupported by any evidence'. I fully accept that posts should be civil, but does that mean that certain ideas, concepts and beliefs are exempted from harsh judgement ? I suspect that if I'd written that Simon Wessely's psychiatry is 'sheer tin foil hattery', no one would have got upset and there would be many supporting posts, so I don't see a Forum standard to follow.
IVI

IVI, there was no question you were referring to and indirectly insulting WPI with the 'tin foil hattery' comment. That was my point, and I am surprised you are defending your statement. There is no insulting terminology that is not insulting. I have no problem as a mod with someone saying they disagree or believe someone is in error. But the problem with throwing around insults, no matter how cleverly crafted, is that it raises the temperature of the discussion and before too long someone will be accusing someone else of being a Nazi sympathizer, or something extreme like that...then the mods have to waste a lot of time putting out fires and soothing hot tempers...

 

[asleep]

Here is a comment I left on the Nature article:

I want to draw attention to what I believe is extensive use of emotional, linguistic innuendo in this piece. In sum, these methods would leave a distinctly negative impression of Mikovits and the WPI on the casual reader. I would expect more from Nature.

To whit:

"Now, even some of Mikovits's former collaborators are having second thoughts."

"Nonetheless, the work has rattled his confidence in XMRV's link to both prostate cancer and chronic fatigue."

As others have pointed out, these two statements, in the absence of direct quotes or other reliable sourcing, are unwarranted and unsupported. They provided a clear, unsubstantiated impression that scientific support for XMRV is rapidly waning. I don't believe that the use of such emotional landmines is standard journalistic practice.

"...no group has published a replication of her findings..."

This is potentially misleading phraseology. It leaves a hanging, implied impression that people have tried to replicate but not succeeded. The reality is that no one has yet even attempted true replication. Why not be more objectively precise in phrasing this?

"Mikovits has dug in, however, attacking her critics' methods and motives."

These emphasized phrases carry very strong negative connotations. This is not an objective description, but rather emotionally charged labeling. Nor does this type of description accord with the much more balanced verbiage employed to describe criticisms from Towers, Coffin, etc.

"Mikovits says that she's analysed all the papers critical of her work and found flaws in each of them. Nevertheless, she's quick to endorse findings that support her work."

Here, the juxtaposition of "analysed" and "quick to endorse" in different contexts leaves an unmistakable impression that Dr. Mikovits brings variable scrutiny to bear depending upon the conclusions of a paper. What evidence is there for this? Why is it necessary to paint this character-undermining picture of her?

"Contamination became a dirty word for Mikovits."

Again, using a very charged, negative phrase in a manner that is not equally extended to her critics. Why not say that "XMRV" is a dirty word to Towers?

There are more examples, but the point is clear. The handling of Dr. Mikovits in this piece (esp. in contrast to the handling of her critics) leaves much to be desired in the department of journalistic objectivity. And as is par for the course with XMRV pieces, the casualties here are the usual suspects: Dr. Mikovits, WPI, XMRV, sufferers of ME/CFS.

 

[Jemal]

Nature has published an editorial concerning the issues raised in the article. Not much news, but it's nice to get some attention, I think (even if people think it's negative attention, all attention should help, I believe):
http://www.nature.com/nature/journal/v471/n7338/full/471266a.html

 

[kurt]

Hi Kurt,
Should Judy have made the comments attributed to her, it may have been no more than a simple un emotive statement of fact and that fact is: many scientists doubt the illness has any underlying serious physical manifestation.....and why wouldn't they when all they have known about the illness has arisen out of the requirement to use the CDC CFS psycho based definition for research purposes. Scientists are not required to study the medical history of ME.(sadly)...and this is how it has been for the last 25 yrs.
The way I read that is that scientists do not distrust the science because its "her" science, but science in the counter camp / counter paradigm and that given their polarisation for so long, they are and would have been suspicious of a development of this nature anyhow...which is understandable given what I have outlined. I think your attack on Mitkovits from that *allegation, (because that is all it is ) is unfair, but understandable given the way it has been written.

For the record, Mikovits has attacked her critics, let's keep that clear. She has on other occasions said things similar to what appeared in that Nature article. I am not attacking her work, but I am a bit bent out of shape over the insinuation she continues to make that scientists who don't find XMRV don't believe in CFS. That is spin and conspiracy theory, and not reality. If she continues to promote this idea that the challenges to her science are based on anti-CFS bias rather then the reality that many researchers have run tests calibrated to VP62 and could not confirm her finding, she will lose credibility.

Incidentally, if Mikovits can find the problem in all the negative studies, why hasn't she published her evaluation? She could save other labs a lot of money and save CFS patients a lot of aggravation if she would sit down and write out something that other researchers could use to fix their tests, if they are in fact broken.

 

[Jemal]

And Nature has also published a Podcast that features the article about Mikovits and XMRV:

http://www.nature.com/nature/podcast/index-2011-03-17.html

 

[SOC]

Nature has published an editorial concerning the issues raised in the article. Not much news, but it's nice to get some attention, I think (even if people think it's negative attention, all attention should help, I believe):
http://www.nature.com/nature/journal/v471/n7338/full/471266a.html

I only got this far before I was too sick to read on:

In the year and a half since researchers first claimed they had found the virus which resembles viral sequences in the mouse genome in people with the disease, nothing close to consensus has emerged. Several groups have tried to verify the results using different methods, and most have found nothing, leading them to suggest that the initial, promising experiments were simply an artefact of laboratory contamination.

[my bolding]

Notice the difference in the connotation of the two words I bolded. Researchers "claimed" to have found the virus, but the refuters "suggested" that the results were laboratory contamination. The implication being, apparently, that WPI et al were being somewhat unprofessional, while the refuters were being eminently objective and professional.

I would have preferred "showed", "documented", or "proved" to "claimed", but I might have swallowed the "claimed" if the editor hadn't turned around and used "suggested" for Towers' (and Switzer's?) declaration that the findings were merely lab contamination.

The innuendo is pretty evident right at the beginning. Maybe it gets better. I'll try to finish reading it when I recover from the nausea. :headache:

Nature is not impressing me with its professionalism.

 

[Jemal]

You probably shouldn't listen to the podcast either then

There is a negative tone to the articles and I have certainly picked it up. The first article suggests to me that the replication study done by Levy is going to turn up negative, for example...

 

[omerbasket]

What great info, will take hours to digest and analyze. Besides the dismal funding for CFS, one item that I noticed was estimated 2011 spending for Smoking and Health $336 M and Tobacco $339 M --- Really?

Doesn't every American know that smoking is harmful to health, do we need more studies? Is it for education and awareness? Shouldn't cig tax pay for this.

And "Basic Behavioral and Social Science" gets 1,184,000,000 $ (1 billion and 184 million dollars), for doing their questionnaires and taking ME patients with police officers to a mental institution - so what?
A lot of the money is being spent in a very idiotic way. I mean, "burden of illness" get 49 million dollars - more than 8 times more than ME/CFS. And for what? Would anoyne be healthy because of that? If it wasn't so sad, it would have been very very funny.