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Wall Street Journal article on PACE Trial and data-sharing

BurnA

BurnA

Senior Member
Messages
2,087
TiredSam said:
A bit too "balanced" for my liking, but then that's probably because I'm a crazy ME patient (in fact I'm not, I'm an ME sufferer, I wish they'd stop calling us patients, it implies we have access to medical treatment and doctors who respect us) incapable of being objective about this.

Agree it's good to be in the main-stream media. Also wish they wouldn't refer the PACE investigators as "scientists".

I also found a large heap of irony in the following:

She feels some scientists believe patients cannot be objective when assessing data because of their personal stake in the matter.
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How about scientists not being objective when reviewing their own data because their careers, reputations and livelihoods are at stake ?

Regarding balance, I agree, i just want a journalist to report the truth, why can't they do that instead of balancing opinions.
 
BurnA

BurnA

Senior Member
Messages
2,087
The more I read this article the more I think it is actually poor.

I know we tend to judge articles based on whether they are positive or negative for the patient community, and in that regard I would say it is a positive.

However, here would be my main points of criticism:

No mention of any of the flaws exposed in David Tullers blog, so the reader doesn't appreciate how serious these are.

"The Institute of Medicine found in a 2015 report about ME/CFS that exertion can make patients’ symptoms worse."
The uninformed reader may believe that this is the first time symptom worsening has been linked to exertion.

Queen Mary University.....added it is also concerned for “the rights and welfare of trial participants.” Huh ? The author could at least have wondered how the rights and welfare of trial participants could be affected by releasing anonymized data ( which according to QMU had already been released to "independant scientists" )

Why would Hortons claim that rational scientific debate might not be delivered based on what he reads on twitter, be a rebuttal to a letter written by 43 world leading academic professors / scientists / researchers / doctors.

What are the circumstances under which "you have to say no" according to Lewandowsky?

To finish on this statement:
Dr. Lewandowsky has proposed creating an independent body that can weigh in on data requests either from scientists or members of the public “when things are contested.”
is awful considering that previously in the article it talks about
"the Information Commissioner’s Office, a U.K. independent authority that rules on public access to information, said Queen Mary University of London, which ran the Pace trial, must turn over research data to a patient who requested it; an appeal by the university will be heard next month."

Maybe that's as good as we can expect from mainstream newspapers ?
 
BurnA

BurnA

Senior Member
Messages
2,087
adreno said:
The complaining on the forum is getting ridiculous. Why not find some serious issues to spend your energy on. Unsubscribed.
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Wow. I recommend you don't read the threads about Walitt.

ETA I love the irony in that you felt you need to complain about the complaining.

Ps it was more of a critique than a complaint, but I'm sorry if it upset you
 
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meadowlark

meadowlark

Senior Member
Messages
241
Location
Toronto, Canada
BurnA said:
The more I read this article the more I think it is actually poor.
QUOTE]

Unfortunately, if this was in the hard-copy edition as well as online, the author had a set word limit and she had to work within it. It sounds like she spoke to the major players and had many quotes available to her, but I imagine she couldn't use them due to the space allowed. I've written for newspapers. You literally get a set amount of inches in which to make your point, and no more than that.
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p.s. I have no idea why all of my comment is appearing in beige to indicate a quote. The internet gives me brain fog.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
BurnA said:
The more I read this article the more I think it is actually poor.
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Watch out, Coyne has issued a warning!

upload_2016-3-8_23-24-12.png
 
Esther12

Esther12

Senior Member
Messages
13,774
To me it reads like an article that had a lot of content edited out. Which is understandable if disappointing. How many Wall Street Journal readers are going to be interested in the details of the debate around PACE?

We were lucky Tuller was willing to put so much work in to a story which is largely unpublishable in mainstream journalism. Hopefully this WSJ piece will help attract some further attention and help lead to further progress that will make for a more easily condensed story. Even if it was a bit disappointing, it's still overall good for patients and a pretty fair attempt to cover the issue.

TiredSam said:
Watch out, Coyne has issued a warning!
Click to expand...

Seems he can jump a bit readily to condemnation. Ease up on that trigger finger!
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
BurnA said:
The more I read this article the more I think it is actually poor.
Click to expand...
Agreed that it's far from a perfect article but I think the journalist has allowed the pro-PACE contributors to (metaphorically) hang themselves with their own words. They come across as ridiculous. It was a very basic overview of the issues and doesn't pretend to be anything else. Anyone whose interest was piqued by the article can easily find out more by looking up the Virology blog. The central focus of the article is about access to data and how it affects patients, rather than ME itself. It puts more pressure on QMUL to release the data and it moves the subject into the mainstream. It brings it to the attention of opinion leaders. Members of the community have got recognition by the mainstream media, and they come across as very reasonable people. I think it's a win for the community. It seems to be very difficult for mainstream journalists to discuss ME, and there wasn't anything dreadful in this article. It's also probably difficult for editors to publish much about the PACE controversy. So I think we did alright considering all the potential pitfalls.
 
Ecoclimber

Ecoclimber

Senior Member
Messages
1,011
You have to look at it from another viewpoint.

Journalists write articles geared to the general viewing public of their news media organizations Make it too specific or narrow on detailed technical aspects would generate less viewership - glazed eyes syndrome- than a broader appeal to issues involving open access and data sharing that is being debated now among researchers. Amy is a fair minded journalist and included articles linking Tuller's expose of PACE on the virology blog. Do you know how hard it is to pitch an idea to a journalist of her caliber at a major news media organization when they are inundated with requests by others for article submission in WSJ? At least it is out there and it doesn't mean there will not be follow-up. It also provided a platform to get PACE trial narrative out there by commenting on the article!
 
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