• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Wall Street Journal article on PACE Trial and data-sharing

Tom Kindlon

Senior Member
Messages
1,734
Wall Street Journal article. Includes comments from Anna Wood, David Tuller, James Coyne, me and others.

Could have been better and could have been worse.

I said a lot more than what is covered e.g. 30-minute Skype call, 700-word reply to follow-up questions. So I'm disappointed more of what I said wasn't included but I suppose with the big media outlets, often they only quote a little of what you said.

http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712

People can comment underneath.

Amy told me it will be in the print edition.
 

Sean

Senior Member
Messages
7,378
The study found that either a program of gradually increasing exercise, or cognitive behavioral therapy, led to modest improvements in patients’ fatigue and physical functioning compared with standard medical treatment, which consists mainly of educating patients about the condition and treating symptoms such as pain.
Disappointed they didn't mention the null result in 2.5 year follow-up paper from the PACE team. That is the 800 lb gorilla in the room, IMHO, because it negates previous claims by PACE of any benefit from CBT or GET.

But otherwise, an okay article.

meadowlark
Clear the cookies and cache in your browser, then try again.
 
Messages
13,774
Amy told me it will be in the print edition.

I think that it's unlikely the details are ever going to get covered in the print edition on the WSJ. The trouble is that without the details it turns into a 'he said, she said'. Not sure why Lewandsky was included when he's said that he's not familiar with the details either: maybe PACE/QMUL refused to discuss any of the specifics? Given how weak their position is, that's probably the best thing for them to do.
 

akrasia

Senior Member
Messages
215
Tom, although it must be disappointing that most of the major PACE arguments are missing from the article, I think the fact that the controversy, using the pretext of the issue of open data, has broken the waves of the mass media is very important. She actually stacks the deck for us by noting that the NIH has a policy of open data and following it with statements by Tuller, Coyne, Anna Wood, and finally yourself, which are all arguing for release. She lets Stephan Lewandowsky have the last word but, at least to my admittedly biased ears, his argument sounds a bit recessed, offered in the interests of balance rather than cogency.

Thanks.
 
Messages
13,774
“These theories presume and insist that patients are not medically sick but simply suffering from dysfunctional cognitions that need to be changed,” said David Tuller, a lecturer in public health and journalism at the University of California, Berkeley.

I think that 'simply' is a bit misleading... needs some provisos in there imo. So hard to summarise their approaches accurately though. We need longer articles!!
 
Messages
24
Frustratingly, I can't read it. WSJ asks me to subscribe first. I read a few cultural pieces there in the last while and maybe I've reached my limit.
Try deleting the cookies in your browser. That's usually how websites track the number of times you have visited.
 

Comet

I'm Not Imaginary
Messages
693
Wall Street Journal article. Includes comments from Anna Wood, David Tuller, James Coyne, me and others.

Could have been better and could have been worse.

I said a lot more than what is covered e.g. 30-minute Skype call, 700-word reply to follow-up questions. So I'm disappointed more of what I said wasn't included but I suppose with the big media outlets, often they only quote a little of what you said.

http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712

People can comment underneath.

Amy told me it will be in the print edition.

Although this may not have been what you envisioned, @Tom Kindlon, it seems like a win for us. It's another article getting the message out that this disease isn't all in our heads. That's a good thing!

Thank you for your hard work and advocacy.
 

adreno

PR activist
Messages
4,841
They're discussing the issue of data sharing in the context of the PACE trial, and relaying the arguments of proponents of both sides. I think it was a very good article, objective and clear.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I can't comment either - when I sign in, the other comments disappear and there's no comment box.

Has anyone figured out how to comment?
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
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.

Presumably "their personal stake in the matter" refers to the "patients" (did I mention I hate the way they call us patients as if we're all tucked up in a hospital bed with clean white sheets being cared for by concerned professionals?) and not the "scientists" (did I mention I don't like the PACE investigators being referred to as "scientists"?).

I suppose a good enough article, they have to try to be balanced until they learn what they're talking about.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Has anyone figured out how to comment?
Unfortunately the first offensive troll of the day has.

Chronic Fatigue patients/families have the craziest, most paranoid and bizarrely aggressive tactics ever. Honestly it almost seems like they stalk the researchers and the institutions that are supporting them. Instead of supporting the research, they literally assault it if it doesn't fit their own hypothesis that they want supported. Science is science, they publish the studies, the researchers have turned over the relevant data, time to take off your foil hats.

Time to drown him out with lots of well-reasoned, calmly expressed civilized debate. Thanks for that :)
 

Stewart

Senior Member
Messages
291
Unfortunately the first offensive troll of the day has.



Time to drown him out with lots of well-reasoned, calmly expressed civilized debate. Thanks for that :)

As far as possible we should try and drown him out with reference to the data sharing issues (which was the focus of the article) rather than our many concerns about PACE.

If we go on and on about how the bad the science is we risk reinforcing his narrative that we're 'bizarrely aggressive'. But we should point out that if 'science is science' as he claims, there shouldn't be an issue with making the data available to be independently verified.
 

Anna Wood

wood/sheridan
Messages
487
I'm a bit frustrated too - having spent 30min talking on skype, explaining the issues - which she really seemed to get, there's a lot more that could have been said without going into details of PACE. In the end of the two bits assigned to me, one I didn't really say and the other was from an e-mail of follow-up questions.

Still, glad people think it was worth it, and gets the debate some mainstream airing!
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Time to drown him out with lots of well-reasoned, calmly expressed civilized debate. Thanks for that :)

Please don't "drown" anyone out. One very good reply is all that is needed. Too many replies make us look bad too...

Also, "literally" :rofl:

images
 
Last edited:

Stewart

Senior Member
Messages
291
Also, "literally" :rofl:

Wait - are you trying to tell us you *don't* have a bound copy of The Lancet Volume 377 that you punch, pummel and throw around the room whenever you're having a bad day? I thought that was a condition of membership of the PR forums.... :)