Wall Street Journal article on PACE Trial and data-sharing

[duncan]

Personally, I would have reversed the order of the last two paragraphs. The integrity of the piece - a piece which I thought good - would have been maintained, but perhaps the reader would have left with a slightly different last impression.

 

[Snow Leopard]

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....

Oh no, I've moved on to "illness terrorism".

Yes, someone really said that with a straight face!

 

[Yogi]

It is a shame that the David Tuller Virology articles are not linked in the article. It really would add to the article. Great to see this making it into the mainstream news and esp the respected WSJ.

If anyone has a log in account or is making a comment can they please link at least the first 3 trial by error articles. Thanks

 

[ScottTriGuy]

I wish they'd stop calling us patients, it implies we have access to medical treatment and doctors who respect us

Excellent and accurate assessment.

Also a great sound byte.

 

[Sasha]

Has anyone figured out how to comment yet? I tried another web browser and it made no difference.

 

[sarah darwins]

Has anyone figured out how to comment yet? I tried another web browser and it made no difference.

Sasha, I just tried it. Logged in with Facebook and the comments section disappeared, as you found. I then went to the WSJ 'comments profile' under my screen name (top-right) and just put in 'uk' under country and saved, then went back to the article. Comment box magically reappeared. Worth a try?

I may comment later but I can't think what to say at the moment (unless you tell me!).

 

[Sasha]

Sasha, I just tried it. Logged in with Facebook and the comments section disappeared, as you found. I then went to the WSJ 'comments profile' under my screen name (top-right) and just put in 'uk' under country and saved, then went back to the article. Comment box magically reappeared. Worth a try?

I may comment later but I can't think what to say at the moment (unless you tell me!).

Ha! Yes, I'm in business.

I wouldn't have though of that in a thousand years - thank you!

 

[Stewart]

I may comment later but I can't think what to say at the moment (unless you tell me!).

You could point out that the only 'independent scientists' that QMUL have been able to identify so far that they have provided the PACE data to are the authors of the Cochrane review into the effectiveness of exercise therapy for CFS. And that the protocol for this review - which the 'independent scientists' used in assessing the PACE data along with that of other studies - was co-written by three of the PACE trial authors. So it's questionable just how 'independent' these scientists really were.

I would add this myself, but I still can't log in. I've tried the Facebook and Google options without success...

 

[Bob]

I wish they'd stop calling us patients

We've been called worse!

(But I take your point.)

 

[Battery Muncher]

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!

Thank you for your efforts in any case, getting into the WSJ is no mean feat.

Hopefully the publicity from this piece will raise awareness and help our cause.

 

[Aurator]

Horton's comments take irony to new levels.

'"When you see some things written on social media [about the ME/CFS trial and the investigators], it makes you anxious that the claims for rational scientific debate based on access to the data may not be fully delivered.” Dr. Horton says the Lancet stands by the trial findings.'

The fact that he has consistently declined even to correspond with other scientists who have raised concerns with him directly about PACE and the Lancet's role in its validation surely makes him a prime example of someone who has turned his back on rational scientific debate. And attempting to undermine the position of your opponents and tar them all with the same brush of irrationality by a sweeping reference to "some things written on social media" is a particularly crude and desperate form of attack; it suggests the actions of someone who has no better weapons left to fight with.

 

[worldbackwards]

"When you see some things written on social media [about the ME/CFS trial and the investigators], it makes you anxious that the claims for rational scientific debate based on access to the data may not be fully delivered.” Dr. Horton says the Lancet stands by the trial findings.'

Yeah, because you should always judge the justice of any group's claims by the most extreme comments you can find about it on Twitter.

 

[Esther12]

When you see some things written on social media [about the ME/CFS trial and the investigators], it makes you anxious that the claims for rational scientific debate based on access to the data may not be fully delivered.” Dr. Horton says the Lancet stands by the trial findings.

When you see a medical journal's editor attempt to ignore concerns raised about a paper he's published, and instead attempt to move the discussion from the science to "some things written on social media" that makes me feel rather anxious that he may not be living up to his claimed desire for rational scientific debate.

PS: Horton, you shouldn't take what people say so personally. We just think you're a berk, that's all. LOL - "welcome to a permanent attack on the present"

Yeah, because you should always judge the justice of any group's claims by the most extreme comments you can find about it on Twitter.

Doh! You're reply is better than mine, and you got in first.

 

[TiredSam]

Excellent and accurate assessment.

Also a great sound byte.

Well thank you. For the avoidance of any doubt I would be honoured if anyone wanted to use it for any purpose they see fit when commenting for the cause.

 

[Yogi]

Lewandowsky trying to reinvent the wheel..........................

Dr. Stephan Lewandowsky, a cognitive scientist at the University of Bristol, says patients who request research data aren’t subject to the same rules or controls that professional scientists are. He 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.

.....That will be the Information Comissioners Office
https://ico.org.uk/

 

[Esther12]

I'd missed this on a first read:

Queen Mary University declined to make the Pace investigators available for an interview.

 

[Never Give Up]

Anyone care to share some of the more interesting WSJ comments here? I can't see them.

 

[TiredSam]

Only one new one since the troll, split into 5 posts:

I was a participant on the PACE Trial, at King's randomised onto the CBT strand.
I had initially been significantly affected by ME/CFS back in 2001 when exhaustion had prevented me from being promoted and led to me working as a part time consultant thereafter.

I took the whole of 2006 as a sabbatical. This proved ineffective and led to my referral for investigations. By the time I reached King's CFS Unit I was desperate. Trudy Chalder was the first person to acknowledge I was ill and offered me hope.

The Trial was presented as a way to help others and myself: there would be no magic bullet but I should be able to stabilise and improve my activity level as a moderately affected person.

What happened? I gave up everything outside work and cut my work hours. My repeat six minute walking test acheived around half the distance of the initial one. I never reached a baseline but the grinding exhaustion eased slightly. In 2013 other medical issues pushed me into being severely affected (cont).

(cont2) One day I was unable to drive, then to climb stairs. Then unable to get and drink a glass of water, I could only crawl. That 'descent' was terrifying. It wasn't a relapse. I'd never experienced anything like it. I'd been told the illness wasn't progressive, I couldn't possibly end up in a wheelchair (my biggest fear back in 2007).

None of the techniques for CBT that I'd continued to use since the PACE Trial worked. My GP could only offer me painkillers and anti depressants. There is NO treatment. NO cure. Since then basic old fashioned convalesence has me staggering around cruising the furniture, able to use the internet, but housebound and

On balance I went into the Trial hoping for a cure, hoping my participation would help others. The CBT has helped me cope with the shock of being ill, taught me to be patient with the convalescence, helped me with the grief of becoming someone else, lesser, virtually non-existant. But no more than that. (cont)

(cont3) And my feelings on the PACE Trial? Honestly, if biomedical research came along that had a success rate for recovery of under 10%? I'd be thrilled for the 10% it helped!

So why am I not thrilled by the 10% results of the PACE Trial? Because the goalposts were moved. Maybe for good reasons, maybe not. I'm not a scientist, I don't want to know the ins and outs, I just want to be fixed. I want everyone carrying the ME/CFS label to be fixed. I want my life back, I want to be able to just walk to the loo without wondering if I'm wearing enough clothes to get there and back without turning into a block of ice lying on the floor until my energy trickles back half way. I want to be able to work. I want to be able to go to the corner shop, to the end of my (tiny) garden, to not have the half mile to my parents' house feel like it's on the moon.

In that context - as a PACE Trial participant there's a couple of things I want: (cont)

(cont4)
What do I want from the PACE Trial?

1. I want the data they hold to be rerun using the original protocols (wrong word?). To see how the numbers would crunch if they hadn't moved the goals half way through. The data was consistently collected all the way through. It's how it was handled afterwards that changed. If you don't understand that, have a look at David Tuller's work referred to above.

2. I want the data underlying the papers published in reputable journals to be released so that professionals can objectively assess if it holds up. I want to be able to trust the results published. There are significant factual issues with the way the results have been presented (again see David Tuller).

3. I want the objective data, the walking and the stairs and the monitor as well as the 'how do you feel' data collected, suitably anonymised, released for other researchers to use. It's valid. It exists. There's so little research money, let's not waste what's already been spent!

(cont 5) There's probably other things I want. But writing this has used up all the energy I own today. I'm having trouble staying awake now. I hope the glimpse into how one of the 640 odd patient's lives has turned out adds a bit of humanity to the debate. We are people. People who are ill. Not just lazy or deconditioned. What we need is less arguing, and more best practice and professionality from those who are supposed to be fixing us!

Thankyou.

 

[Never Give Up]

Thank you, @TiredSam, great comment!

@Sasha, did you make a comment?

 

[Sasha]

@Sasha, did you make a comment?[/QUOTE]

Yes, but I assume it's held in moderation. I hope lots are and will soon be released into the wild!