PACE data request FS50600710 (not the appeal case)

[Snow Leopard]

The PACE trial should be a lesson for all researchers doing controversial research - be open with your data from the start - publish all the facts and figures you claimed you would, so that this kind of controversy doesn't happen. Openly engage early with those who are criticising the research, try to see their point of view and try to be helpful and bridge the gap, not dismissive as these people have done.

Unfortunately, the trend towards lack of openness and discussion between psychiatrists in the UK and patients in the UK had already started before the PACE trial even begun. The gap can be bridged, but it looks like it will take a change of attitude and a lot of work if it were to happen.

 

[user9876]

The PACE trial should be a lesson for all researchers doing controversial research - be open with your data from the start - publish all the facts and figures you claimed you would, so that this kind of controversy doesn't happen. Openly engage early with those who are criticising the research, try to see their point of view and try to be helpful and bridge the gap, not dismissive as these people have done.

Unfortunately, the trend towards lack of openness and discussion between psychiatrists in the UK and patients in the UK had already started before the PACE trial even begun. The gap can be bridged, but it looks like it will take a change of attitude and a lot of work if it were to happen.

The PACE trial has made itself far more controversial by failing to publish results (as they defined) let alone by having a meaningful protocol. But additional controversy should come because it demonstrates that the UK establishment (universities, dept. of health, and the MRC) are not able to correct issues with research and properly manage a research contract. When concerns were raised those groups should have asked detailed questions about the protocol changes and particularly around the recovery changes which as far as I can tell were not approved. The reasons for the changes in general are so weak and meaningless they should have never been approved. So it should not just be a controversial trial due to the failed methodology and failure to publish results but it should be a controversial trial due to the way those in positions of authority have failed to take action. If a drug company had done this there would be headlines and an outcry by many in the medical community. But I wonder if that is more because of their desire to bash 'big pharma' than to see good science.

 

[Mrs Sowester]

Throughout QMUL's arguments they seem to be working on the assumption that it's immoral to challenge authority.

I recall this was the problem that faced disability rights campaigners. They came up with the slogan
Nothing About Us Without Us
is it worth us adopting this? It is a well recognised call for civil liberties that is apt. I was pondering whether
Nothing About M.E. Without ME
works as well?

 

[Esther12]

I don't think release of the data is all that important for us. We have two major arguments against PACE, 1) the follow up study show zero effect of their intervention, and 2) their unscientific refusal to release data. The winds are very much turning towards open data, and time is against these dinosaurs.

I really disagree. I think that they've done a really good job of smearing patients, at least amongst researchers in the UK. A lot of people will be left looking ridiculous if it's accepted that patients were right to be concerned about PACE, and the researchers did poor work. A lot of influential people will be bending over backwards to avoid that conclusion.

Also 1) interpreting the follow-up data is difficult as they broke their own randomisation and 2) a lot of researchers don't like the idea of being open to more scrutiny, and this can combine with the way patients have been smeared.

The problems with the PACE trial are already clear to those willing to spend a lot of time looking (vexatiously) at the details, but few are willing to do that. The release of PACE results of the trial's protocol defined outcomes will let us hold the PACE team to the standards that they set for themselves, and simply illustrate the impact of the way they spun results.

 

[Bob]

LOL at "there is even a hashtag on Twitter #PACEtrial" - is there no depravity to which they will not sink?!

lol, made me chuckle.

 

[panckage]

Despite the tiny chart with the appallingly inappropriate scale

I can't see anything wrong with the chart. If you look at the error bars every single measurement is the same within error. It clearly demonstrates that there is no difference between treatments or rather if there is a difference between treatments the study was not powerful enough to detect them

 

[Hutan]

I can't see anything wrong with the chart. If you look at the error bars every single measurement is the same within error. It clearly demonstrates that there is no difference between treatments or rather if there is a difference between treatments the study was not powerful enough to detect them

Yes, fair enough. Some context may help.

In the report, the chart was buried in a bank of small charts, most of which presented the results of subjective measures. As one of the few objective measures, it deserved more prominence and discussion.

All of the data points fall between 1.5 and 2.5 and the only y axis label in that range is '2' with the result that it is difficult to see what is going on, especially if just casually reading the paper. If the researchers weren't trying to hide the null-to-negative result for CBT/GET, the scale could have been changed or the y axis could have been taller with more labels (e.g. 1.0, 1.25, 1.5, 1.75, 2.0 etc).

All those problems would not have been so important if the report authors had provided the aggregated data that the charts used in an appendix so others could make their own charts.

 

[CFS_for_19_years]

Reading the PR comments they quoted as evidence of a campaign against them makes me think that they would have been better off on a reality show like Real Housewives of Wherever, fervently discussing why they think Whoever doesn´t like them, rather than in the scientific world, where an ego that a eight-year old would think was a bit delicate (they keep calling me names!) is somewhat of a disadvantage.

I really hope this makes their next list of quotes.

I hope they quote this (wait for it):

 

[Bob]

SpoonSeeker's take (blog) on the ICO decision notice...

Closing the Door on Freedom
spoonseekerdotcom
Posted on May 1, 2016 by mrspoonseeker

This is extraordinary stuff. It suggests that if patients write letters to medical journals, it somehow invalidates their right to make FOI requests. And there was me thinking this was simply exercising freedom of speech. If a doctor writes in to criticise a paper, is that also vexatious, I wonder? Or are we patients ‘getting above ourselves’? Is that the problem?

 

[Hutan]

Thanks Bob, the blog is well worth a read.

Closing the Door on Freedom
spoonseekerdotcom

One does wonder how many pages of social media activity they had to plough through to find that quote, and how much burden QMUL placed upon themselves by deciding to trawl through the conversations of patients in that way: a strange thing for an organisation apparently under such a distressing administrative burden to take upon themselves.

 

[Daisymay]

SpoonSeeker's take (blog) on the ICO decision notice...

Closing the Door on Freedom
spoonseekerdotcom
Posted on May 1, 2016 by mrspoonseeker

Excellent blog, thanks!

 

[GreyOwl]

Reading the PR comments they quoted as evidence of a campaign against them...

There is evidence of paranoia and a clear lack of insight.
They are in distress and may benefit from psychological care, though I am not hopeful of full clinical benefit.

 

[Snow Leopard]

If they wanted genuine communication with us (as part of the community), they'd sign up and discuss their point of view and hear our point of view.

Unless they engage and are willing to make concessions this rift is never going to go away.

 

[A.B.]

If they wanted genuine communication with us (as part of the community), they'd sign up and discuss their point of view and hear our point of view.

Unless they engage and are willing to make concessions this rift is never going to go away.

I suspect that this part of psychiatry is just pure bullshit. They have nothing that works and understand nothing, and their careers revolve around creating the illusion that they are experts with working treatments. Patients must be silenced and oppressed with diagnoses that suggest they're irrational or anyone listening to patients would quickly discover the enormous discrepancy between the patient experience and the rosy picture painted by these quacks.

So my prediction is that patients will be listend to around the same time they admit they got nothing, or when they are exposed, or when they drop the illness alltogheter and a difference branch of medicine takes responsibility.

 

[Valentijn]

If they wanted genuine communication with us (as part of the community), they'd sign up and discuss their point of view and hear our point of view.

Unless they engage and are willing to make concessions this rift is never going to go away.

PACE authors have repeatedly turned down any sort of opportunity to publicly engage in uncontrolled (unedited and not delayed) discourse even with other academics on the subject. There's no chance they'd discuss anything with mere patients in a forum where they can't demand that difficult questions not be allowed, and can't demand that they have the last word.

It's a bit sad really, since they're in the business of treating patients. You'd think that would involve some acceptance of the concept of interacting with people on equal terms, but apparently not.

Their accusation that they wouldn't be allowed to engage in a discussion here is pure speculation bordering on slander. And it's a truly perverse reversal of the actual situation: we'd love to have them involved in a format where we can respond to their typical non-answers by pointing out that they haven't answered any of the actual questions

 

[Scarecrow]

Unless they engage and are willing to make concessions this rift is never going to go away.

You're so right but it's far too late for that to happen.

Even patients who take opposing views to others are aggressively attacked on occasion. There's no way a civil open discussion would be allowed to happen with anyone associated with PACE. As fellow patients, we can understand the vitriol, even if we don't condone it, and we recognise that it stems from the very work of those who have psychologised the disease. But I don't think any of the PACE authors or their like minded colleagues will ever be able to take a long hard look at themselves and accept the role they have played in alienating patients.

Their accusation that they wouldn't be allowed to engage in a discussion here is pure speculation bordering on slander. And it's a truly perverse reversal of the actual situation: we'd love to have them involved in a format where we can respond to their typical non-answers by pointing out that they haven't answered any of the actual questions

I'd already written the above just as you posted. As you can see I disagree but where did they say that they wouldn't be allowed to engage in a discussion here? I'd love to see it happen but fear that a small minority of patients would not be able to restrain themselves.

 

[Mrs Sowester]

What strikes me is the inconsistency - loneliness is a killer we're told. Isolation is extremely damaging psychologically for mental and physical health. So we seek to remedy the isolation that is a direct result of our illness by connecting with others online. But what we say is monitored and used against us.

The QMUL team have the luxury of being able-bodied enough to meet face to face and have a discussion without being monitored, having to watch every word that is spoken or having remarks taken out of context and used as weapons against them.

Their tactics are designed to stifle criticism and silence the voices of PWME this amounts to divide and conquer techniques and is in effect discriminatory.
Housebound and bedridden PWME discussing their treatments online amounts to a conspiracy? Would they advocate trying the hands of deaf people behind their backs to stop them communicating by sign language? It sounds an extreme comparison, but it really isn't.

 

[seaturtle]

This elongated graph helps to show what's going on...

Timeframe = 0, 12, 24 & 52 weeks...

 

[ukxmrv]

Their friend Vincent Drreary joined one of the earlier UK internet groups. He didn't announce himself, just lurked until it all got too much for him.

I don't have his parting email but he refused to engage in any meaningful discussion and left in a huff. His last email was somewhere along the lines of us all being ungrateful for all the work that the psych lobby was doing "for us".

http://www.kcl.ac.uk/innovation/groups/projects/cfs/patients/history.aspx

 

[Snow Leopard]

This elongated graph helps to show what's going on...

Timeframe = 0, 12, 24 & 52 weeks...

Looks like a baseline + random noise to me.