BMJ: Pressure grows on Lancet to review “flawed” PACE trial

EzzieD said:
Spot-on. As someone who acquired ME in 1983 defined by Ramsay's description back before 'CFS' was invented, and taken seriously as a physical illness by the doctors who did believe it was 'real' (some didn't, but many did), I hear you 100%. As well as Ramsay ME, so many unfortunate people with other varying fatigue-related diseases have been swept under this 'CFS' umbrella since then, that it will indeed now be hard to sort everyone out into sub-groups. It's a mess, and one that was invented by some self-serving folks in order to 'disappear' a condition that I guess they thought was short-lived and would just go away. Unfortunately, it hasn't.
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Thanks, EzzieD. I also just wish to make clear I don't wish to diminish what CFS is, people can clearly be ill with many different poorly understood conditions (perhaps both physical and psychological - the Oxford Criteria caused chaos) when they get a CFS diagnosis nowadays, but my frame of reference is postviral Ramsay ME - it is the one Behan consultant neurologist used to diagnose me in 1983/4. And it is the illness that has screwed my life up, so that is naturally the illness I want researched. The conflation of ME and fatigue helps no one except perhaps for PACE researchers and their disciples. Although Michael Sharpe seems pretty confused about which illness PACE was actually targeting. He tells us now - expediently - it wasn't ME but CFS. Or chronic fatigue syndromes plural, even!
 
Keela Too said:
Would a Pharma body be a useful, respected, arbitrator in judging PACE (and similar) trials?

Sure the BPSers will say their trials can’t be judged to the same criteria as Pharma trials. Yet, despite obvious difficulties with blinding and so on, there seem to be so many features of a fair test that PACE wilfully ignored.
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The relevant body would be the Medicines Control Agency, or current equivalent, which decides drugs are safe and effective enough to licence. But their remit is to do just that, not to make general comments about quality of science. The quality of the science anyone can comment on and it is not good. If there is no licensing process for these therapies then the MCA would almost certainly prefer not to comment. They will have had Simon Wessely breathing down their necks before they even read the request.

All trials have to be judged by the same criteria because these criteria are simply what a reasonable person in possession of all relevant facts would conclude based on rational argument. The question is whether the evidence is likely to be reliable and whether something is likely to be reliable has nothing to do with how easy it is to gather reliable evidence. It is a matter of what the reality is. And, yes, the PACE authors failed to make use of all sorts of things they could have done to make the results more likely to be reliable.

The problem is purely one of politics and stupidity. People in charge of organisations that make these sorts of decisions - Royal Colleges and things like NICE - are quite often pretty dim. Intelligent people tend to be treated as troublemakers and not asked to apply.
 
Jonathan Edwards said:
The question is whether the evidence is likely to be reliable and whether something is likely to be reliable has nothing to do with how easy it is to gather reliable evidence. It is a matter of what the reality is.
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Yes. Just because your favourite therapy relies on evidence that pigs can fly, but that evidence is notoriously hard to gather reliably, this hardly then means your therapy will instead be OK if you merely fantasize that pigs can fly. You have to step back and ponder if you are simply on the wrong track somehow.
 
adambeyoncelowe said:
I dunno. That last characterisation worries me. Perhaps patients 'won't admit' to psychiatric problems because they don't have them? In my experience, those whose fatigue is caused by psychiatric problems are quite happy to embrace that causality and say so. Hence why those who claim to be cured by LP, Gupta, etc, also talk a lot about 'stress'.
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Yes made me think of this thread you posted @adambeyoncelowe which talks about people with “illusory mental health”https://www.s4me.info/threads/cfs-a...ental-health-to-address-the-controversy.5540/
 
I get a little bit frustrated when we throw unsubstantiated generalisations around about clinics that no one has any real data on and often protagonists have never visited.

I have a CFS diagnosis and went to a clinic ...and sat in a group therapy session of around 20 people...some of which couldn’t climb the stairs to get to the meeting room (I kid you not)

I couldn’t say whether 100% there had me/CFS , or 5% had some other diagnosis or 100% had nothing to do with ME (including myself)

We don’t have a biomarker so let’s not pretend we know who has really got ME ...I notice a lot of people like to bandy around the big 250k number when it suits them but in the same breath talk about all the misdiagnosed depression cases? The truth of the matter is to talk in this way is unscientific and emotive and gets us nowhere, because there is nothing to substantiate the claims.
 
Jonathan Edwards said:
And, yes, the PACE authors failed to make use of all sorts of things they could have done to make the results more likely to be reliable.
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One could of course argue that the results, as presented in the reanalysis paper, were in fact reliable as outcomes of the study. They showed that even with all the built-in bias from the study design, they didn't get decent reports of benefits.
 
dave30th said:
One could of course argue that the results, as presented in the reanalysis paper, were in fact reliable as outcomes of the study. They showed that even with all the built-in bias from the study design, they didn't get decent reports of benefits.
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I think there needs to be an important distinction between the data that comes out of a trial, versus the information that is determined from that data. You could potentially present a dozen different teams with the same set of data, and they might arrive at scarily different reporting of information from that data. The information content will inevitably be prone to a degree of interpretation I would think no matter how scientifically approached. And if the teams are not rigorously scientific with their approach, then this very interpretation process is going to be subject to the authors' bias. Results are not data, but an interpretation of the data ... I think?

I imagine that with truly good-science analyses of a trial's data, the information extracted will say as much about the trial's design and implementation integrity, as it will about the actual outcomes themselves. But my knowledge is way too insufficient to take that beyond an idle notion.

ETA: I did not mean to imply in the above, that the data itself is necessarily free of bias - that is clearly not the case in PACE for example. What I mean is that even after all the data is gathered, bias-laden or not, there is still a further phase of a trial where bias can be (further) introduced - the reporting of it.
 
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NelliePledge said:
I’m sure those pigs have an unhelpful belief and they just need a bit of Skype CBT into their pig styles and they will be fully recovered flying pigs just ask Trudy she’s probably got a training video on how to get your pig to fly
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I think you've cracked it! The truth clearly is that all pigs have unhelpful beliefs that they can't fly, and the only real issue is that their ears are severely deconditioned! They need to get on and do their GET, Graded Ear Therapy, so their lugs can return to the full functionality they clearly evolved for, swooping and soaring through the skies, to the delight of us ground based life forms.
 
Submitted to BMJ: PACE proponents, straw men and bricks.
After reading professor Sharpe’s letter to the Times on the PACE Trial, I have followed the BMJ comments submitted by learned and informed people. I am not learned, but as a carer for some 20 plus years, I am reasonably informed.

Perhaps it would be helpful to look at the divergence of opinion on PACE again, this time metaphorically?
What I see in the PACE proponents’ arguments are“strawmen’, “clutching at proverbial straws.”

Neither is the strawman approach helpful, nor clutching at straws advised.
Neither have have any place in reasoned scientific argument.


Finally, the "proof of the pudding is in the eating."
If PACE were to have been the "best thing since sliced bread", patients and their families would be embracing it, not rejecting it! No one wants to remain ill and most will do anything to improve their situation.

The only "benefits" coming out of the PACE trial are to the DWP and the Insurance Industry.

FYI

straw man

noun: straw man; plural noun: straw men; noun: strawman; plural noun: strawmen

1. 1.
an intentionally misrepresented proposition that is set up because it is easier to defeat than an opponent's real argument.

"her familiar procedure of creating a straw man by exaggerating their approach"

2. 2.
a person regarded as having no substance or integrity.


Clutching at Straws.......


“We drift down time, clutching at straws. But what good's a brick to a drowning man?”

Tom Stoppard, Rosencrantz and Guildenstern Are Dead

"Hamlet told from the worm's-eye view of two minor characters, bewildered Rosencrantz and Guildenstern. Echoes of Waiting for Godot resound, reality and illusion mix, and where fate leads heroes to a tragic but inevitable end.............."
 
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