The PACE trial [pro]: It’s time to broaden perceptions and move on. Keith Petrie, John Weinman

[Jonathan Edwards]

Time to collect more data on effective treatments is an interesting phrase. So presumably you decide which are effective treatments and collect more data to confirm that. There is no suggestion that you might have to collect data on treatments that might or might not be effective to see if they are.

With friends like this who needs enemies?

 

[user9876]

These issues and other points raised have been responded to by the PACE authors in detail in this journal (White et al., 2016). They have also previously answered a number of similar rounds of critiques (Sharpe et al., 2016; Wessely, 2015; White et al., 2016).t

I find it interesting how there is a repeated claim that the points have been addressed and quoting papers/letters where they are not addressed. If the claims are addressed why not put forward the arguments and how they are addressed. But they cannot do this because they have never been addressed.

I do wonder if the people quoting these have read the criticisms and the answers and genuinely think they have been answered or if they just haven't bothered. Or more concerning is if they intentionally are misleading people.

 

[user9876]

The unfortunate outcome of the continued controversy about the PACE trial and intimidation of researchers in the CFS field has increased the likelihood of deterring quality researchers from working in the area. Who would want to set up a scientific base camp in an area where you will get continuously attacked should your research findings or clinical trials support an unpopular treatment? The opportunity cost of continuous criticism of the PACE trial over 6 years ago is likely to be a considerable reduction in researchers wanting to research to further understand CFS or do further treatment trials.

I think they really do live in their own little bubble. The only researchers who appear to have been genuinely intimidated have been those who have stepped out of line and criticized the PACE trial and by those involved in the PACE trial. Since PACE we seem to have an increasing number of quality researchers involved particularly in the US where funding is becoming more available. Patients have backed researchers and raised funds for research.

Some poor quality researchers may feel intimidated by the idea that they will need to justify and be held accountable for their poor quality work. But making the accountable is a good thing. Perhaps they were attracted to ME in the first place because they didn't have the necessary skills to compete in other fields; or they thought others were poor quality and had the misplaced arrogance to think they would shine even without doing anything significant.

 

[Barry53]

This is what I assume to be the Cochrane review in question ...

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub6/full

Looking at the Moderate quality of evidence studies (there are no High, and the Low and Very Low would seem only to have been included so they can be sensibly ignored), they all share the same toxic-science combination that @Jonathan Edwards highlighted that PACE did: unblinded trials with (highly) subjective outcome measures.

Also, for each study the review only reports (in the table) a single outcome measure. Did each of these studies really only provide a single outcome measure? Or did they report multiple measures, and the reviewers just cherry-pick the ones they liked?

The review feels like a subjective interpretation of studies that were themselves highly prone to subjectivity in their reported outcomes.

 

[user9876]

It is time to move on and time for researchers to continue adding to the evidence base in order to increase our understanding of the condition and the most effective treatments.

The idea of moving on seems unethical. Clearly we want more research although I think what they mean by more research is to fund their friends doing more poor quality studies.

But moving on without addressing the failings of PACE is unethical. It is simply saying it is ok to lie to patients and lets pretend there are not problems but it is not. The failings of the PACE trial need to be challenged because it is influencial and leading to the recommendation of treatments that the results don't support - ones that are potentially harmful. It also needs addressing because we need to up the standard of research and make sure all research (bio and psych) has good methodology. The psych research is particularly vulnerable and new research is still happening with the same fundamental flaws as PACE - the results will be meaningless but probably show slight improvements on subjective measures but the real result will be the wasting of research money.

 

[user9876]

This is what I assume to be the Cochrane review in question ...

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub6/full

Looking at the Moderate quality of evidence studies (there are no High, and the Low and Very Low would seem only to have been included so they can be sensibly ignored), they all share the same toxic-science combination that @Jonathan Edwards highlighted that PACE did: unblinded trials with (highly) subjective outcome measures.

Also, for each study the review only reports a single outcome measure. Did each of these studies really only provide a single outcome measure? Or did they report multiple measures, and the reviewers just cherry-pick the ones they liked?

The review feels like a subjective interpretation of studies that were themselves highly prone to subjectivity in their reported outcomes.

They changed their protocol and didn't follow the normal way of reporting. They also rated PACE as highly as they could as an open label trial failing to take account of the outcome switching. Robert Courtney and Tom Kindlon wrote excellent commentaries but their responses were poor and particularly dismissive of Courtney's comments probably as they had no coherent defense.

 

[Barry53]

So saying Cochrane published a review does not provide any form of coherent defense against the failures of PACE yet this is the strongest argument they put forward.

The simple truth is they have no sane, coherent defence. So they keep falling back on the only thing they know - insane, incoherent defence.

 

[Murph]

Well! That piece is barely up to the quality of a comment on a blog post. It reads as if it were written between 11.30pm and midnight whilst finishing a bottle of Shiraz.

If this is the final stand for PACE defenders, the study is in a piteous condition!

 

[Wolfiness]

Le sigh.

This is basically PACE supporters clinging to that specious Schopenhauer meme in a world where we're arguing whether my "ineffective" is your "unpopular" or vice versa.

 

[Daisymay]

A quick google clearly shows Professor Keith Petrie and Professor Sir Simon Wessely have worked together repeatedly over the years, well I never, what a surprise.

eg:

http://www.bmj.com/content/324/7339/690

http://www.bmj.com/content/329/7480/1417.full.print

https://twitter.com/i/web/status/831983993096589313

http://forums.phoenixrising.me/inde...nection-to-simon-wessely-at-cfs-central.8763/

http://discovery.ucl.ac.uk/1367283/1/1.pdf

etc

 

[Murph]

"The unfortunate outcome of the continued controversy about the PACE trial and intimidation of researchers in the CFS field has increased the likelihood of deterring quality researchers from working in the area."

Luckily for us, the reverse is true. The more fuss there is about how the psychological model is so flawed, the more actual scientists sniff the chance of making a ground-breaking biomedical discovery in an under-explored frontier.

CFS is the Wild West, there's gold in them thar hills, and every article about the PACE kerfuffle is like an 19th century headline about nuggets sitting just below the surface. It sends bold pioneers to the blank areas of the map, where they believe they can make their fame and fortune.

Nobel Prizes are in the offing, and I reckon our norwegian friends are leading the race to get them at this stage. Prof Davis, however, may yet have a burst of speed to unleash...

 

[Snowdrop]

So these two would like to attach their careers to the sinking ship. Silly move.

And it's all academic to them. It's not their lives being affected by this religious belief called PACE.
They deal in abstractions. I'd like to know what they'd have to say to all the people who suffered from PACE treatments.
Some of them from the actual trial.

More gaslighting. Patient abuse becomes patient aggression etc etc.

But let's all just move on. Don't they wish. So many lives ruined as time ticks by -- oh but let's all just move on.

Need more data for effective treatments. <Cough>MEGA <Cough>. Likely what they mean.

 

[Woolie]

Time to collect more data on effective treatments is an interesting phrase. So presumably you decide which are effective treatments and collect more data to confirm that. There is no suggestion that you might have to collect data on treatments that might or might not be effective to see if they are.

Yes, If your psyc medicice study fails, you keep trying till you get the result you want. You see this in every discussion section: "further research is needed to confirm the role of X on Y and Z".

You never, ever take no for an answer! After all, that would be Cartesian dualism!

 

[Wolfiness]

In our experience as health psychologists, patients with other illnesses such as cancer, renal disease, heart disease or chronic respiratory problems are usually very keen to adopt psychological interventions that can reduce fatigue, improve functioning and well-being.

Patient beliefs about CFS and in particular causal beliefs about the illness are clearly important in understanding the reaction to the PACE trial.

Don't these statements sort of contradict each other's implications?

 

[deleder2k]

Absolutely. The difference is that patients with cancer, renal disease or heart disease actually gets a medicine to treat the condition. That is the primary treatment. We miss that. It seems like the author of this piece did miss it too.

 

[Snow Leopard]

Am I out of touch, is my science of poor quality? No it is the patients who are out of touch.

Seriously, why are they pushing the myth that patients believe in cartesian dualism? I don't know anyone who believes there is a separation of mind and body. Secondly, it is mainstream medical/psychiatric practise that pushes the dualism with the idea that there are "organic" vs "psychosomatic"/"medically unexplained" illnesses and only prescribing psychological therapy for the latter - in practise this is very dualistic. It is inherently dualistic to interpret "medically unexplained" as being of mind (psychological) origin and otherwise unmeasurable...

All they needed to do was download Simon Wessely's tweets and paste them together at random.

 

[Snow Leopard]

Absolutely. The difference is that patients with cancer, renal disease or heart disease actually gets a medicine to treat the condition. That is the primary treatment. We miss that. It seems like the author of this piece did miss it too.

Exactly. ME and CFS patients would not be so upset if psychological treatments were pushed as adjunct treatments just like those other illnesses. The problem is that these treatments are pushed as primary treatments, potentially leading to remission when the evidence has never supported this claim.

Who would want to set up a scientific base camp in an area where you will get continuously attacked should your research findings or clinical trials support an unpopular treatment? The opportunity cost of continuous criticism of the PACE trial over 6 years ago is likely to be a considerable reduction in researchers wanting to research to further understand CFS or do further treatment trials.

The above comment is missing the point. The lesson is not to conduct science with severe methodological limitations. If you are afraid of criticism of your poor quality methodology, get out of the laboratory! Enough with the double standards - unblinded trials with subjective outcomes are not considered sufficient evidence for pharmacological trials, so they should not be considered sufficient evidence for non-pharmacological trials. When the objective evidence of functioning contradicts the subjective self-reports, you know you have a problem. It is extremely poor practise to simply ignore the objective evidence and pretend the subjective questionnaire results is sufficient, especially when even this effect disappears at long term followup.

The fact is that some people, ie Ian Lipkin who had unpopular findings eg disproving the association of XMRV, instead of being pushed away due to angry patients, has become more deeply involved, including eating many hot chillis for us.

 

[alex3619]

Yes, I was speaking to a medical professional (who is fully aware of the many problems with PACE) about the problems with the Cochrane review and they were like: "Cochrane too?! But everyone just trusts them."

I was messaging with an academic in this area, and they too had a "Cochrane too?" reaction.

 

[alex3619]

they believe mind and body are linked

Which is Cartesian dualism. Bring on the monism!

 

[alex3619]

I believe there are three issues covered by "mental science". The first is the brain, the second its physical function, and the third what information it has learned. None of this is "mental". Misusing outdated and deceptive terminology is a big problem.