PACE trial commentaries in the Journal of Health Psychology to be made open access

[adreno]

I found so many favorite parts that I would have to quote the entire paper.

 

[Molly98]

Jonathan's paper points out the inability of the PACE authors to understand and reason about criticisms. I think their and Wessely's responses should be seen as a damning the British education system and its ability to teach critical thinking and logical thought.

I agree with all you say here.

However what I find most chilling is the inability by Wessely and White and Co to have empathy and put themselves in the patient's position and to see their humanity, this to me, is the most glaring contrast between the Likes of Wessely and White and Chalder etc and Jonathan Edwards, and I would add the most dangerous.

No matter how many times people point out the flaws in their works they are not only not going to concede they got it wrong but they are never going to develop empathy and compassion for patients because I think their actions until now are really those of someone who lacks this vital capacity.

It then has to be questioned as to how you can have people in this position who can cause such harm to patients and be unaware of the harm even when the evidence is provided and patients are for years screaming it from the rooftops so to speak. These people are a danger to patients and for god sake medical community WAKE UP, isn't one of your tenants to do no harm. Alarm bells should be ringing all over the place in the medical and health community.

 

[Sean]

Whenever bias can creep in it will. The only solution is to design it out of the study from the outset.

Core point in the paper for me.

Thank you, Prof Edwards.

 

[Art Vandelay]

Jonathan's paper points out the inability of the PACE authors to understand and reason about criticisms. I think their and Wessely's responses should be seen as a damning the British education system and its ability to teach critical thinking and logical thought.

'It is difficult to get a man to understand something, when his salary depends on his not understanding it.'

There's no way Sir Simon 'pseudo-science' Wessely and the others will admit that they were wrong because their whole stinking taxpayer-funded illusion (along with all the prestige and power that comes with it) will crumble.

The PACE trial was essentially a huge gamble to prove that their nonsensical theories were correct. However they ended up getting a null result, so they had to desperately spin and manipulate the results in order to keep the scam going.

They are starting to look pretty bad though, so it's possible that someone from the PACE team will crack and try to salvage their reputation by blaming the others for 'misleading' them.

 

[A.B.]

They are starting to look pretty bad though, so it's possible that someone from the PACE team will crack and try to salvage their reputation by blaming the others for 'misleading' them.

This could eventually happen.

 

[Art Vandelay]

This could eventually happen.

I hope so. I'd love to see them turn on one another.

 

[Jan]

This could eventually happen.

I couldn't find the praying emoji. I live in hope.

 

[Sidereal]

I think their and Wessely's responses should be seen as a damning the British education system and its ability to teach critical thinking and logical thought.

I can't speak for Britain but I wouldn't be quick to condemn the education system and would place the blame solely on the venality of the authors. I don't see how you could be a tenured professor of psychiatry and not know basic things like this. Granted they teach them nothing about statistics in medical schools but they are published authors with decades of research experience, you learn these things on the job and in graduate school. They also had access to professional statisticians who can help them interpret the data.

In this country we teach psychology undergraduates how to interpret trial designs like their follow-up study which the authors egregiously continue to claim showed that the treatment effects were 'maintained'. Why are they being allowed to say this & continue to say it even after it has been pointed out to them that it's NOT TRUE? Scenarios like this are the basic bread and butter of design of psychology experiments. You'd fail an exam as early as in second year of undergrad if in this scenario you interpreted the within group effect as indicating that the treatment worked when there was no significant difference between the treatment and the control group.

 

[Jonathan Edwards]

So he really doesn't understand does he. You can lead a horse to water.

 

[lilpink]

I hope so. I'd love to see them turn on one another.

That would be curious..and make a change to them attacking the people they claim they are trying to help.

 

[Gijs]

So he really doesn't understand does he. You can lead a horse to water.

I think it is time to lead Wessely, White, Chalder e.a. to a court or medical disciplinary tribunal. If possible, legal action should stop this madness otherwise they continue.

 

[adreno]

Why are they being allowed to say this & continue to say it even after it has been pointed out to them that it's NOT TRUE?

It boogles the mind.

 

[A.B.]

PACE criticism is now published in peer reviewed journals and open access too .

I'm sure the PACE authors will continue to pretend that the emperor's clothes are magnificent.

What will happen next?

Trying to get the PACE authors to acknowledge the problem with the trial is a waste of time. They already know CBT/GET doesn't work - that's why the changed the outcomes in the first place. We can now however maybe convince people that were not directly involved in PACE. Should we patients try to get medical guidelines changed?

 

[ladycatlover]

I think it is time to lead Wessely, White, Chalder e.a. to a court or medical disciplinary tribunal.

I first read that as saying a court of medieval disciplinary tribunal! For a moment I indulged in fantasies of "Off with their heads"... Then I re-read it, as I did actually think to myself "surely that's not what was written" and sadly I was right. Oh well, nice to dream!

 

[keenly]

'It is difficult to get a man to understand something, when his salary depends on his not understanding it.'

There's no way Sir Simon 'pseudo-science' Wessely and the others will admit that they were wrong because their whole stinking taxpayer-funded illusion (along with all the prestige and power that comes with it) will crumble.

The PACE trial was essentially a huge gamble to prove that their nonsensical theories were correct. However they ended up getting a null result, so they had to desperately spin and manipulate the results in order to keep the scam going.

They are starting to look pretty bad though, so it's possible that someone from the PACE team will crack and try to salvage their reputation by blaming the others for 'misleading' them.

Wessely knows he is wrong. He is not stupid, he is a con man. He is a sociopath serving a corrupt system. Only a moron or a sinister, deranged individual acquiesces with the likes of him.

 

[Invisible Woman]

Well, we are but it's really slow going.

Charles Shepherd and the Countess of Mar and others have had chats with those who supposedly have a hand in these things but, in true bureaucratic style, the so and so's seem Teflon coated.

First they set up NICE - NICE was set up overview how appropriate and cost effective treatments are and sets the guidelines for the NHS in the UK. So in simple terms the NHS treats patients and NICE decides what treatments are appropriate and cost effective. A meeting was had with Prof Mark Baker, Clinical Director of NICE. Now he admitted the guidelines were not fit for purpose. Hurrah!!! Progress, but no....

There was a general election in the UK and the Parliamentary Group who was working on this had to be reformed.

Then came NHS England - Now NHS England oversees NICE and the NHS and any changes to guidelines have to go through NHS England. So you have to identify the right NHS England people and get them to agree to a meeting and start all over again.

I daresay as soon as we come close to getting somewhere they'll introduce another layer of pencil pushers.

In the meantime the good tax payers of the UK are wondering where all the money supposed to fund the NHS goes....

Game of "Whack - a -Mole" anyone?

 

[Invisible Woman]

I particularly liked this bit in Jonathon's paper:

"The patients have been aware of the problems for several years, and all credit to them for their detailed analyses. In my experience, most of the people with a deep understanding of the scientific questions associated with CFS/ME are patients or carers. To suggest that when these people voice their opinions they are doing a disservice to their peers seems to me inexcusable."

Words simply cannot express how grateful I am to the likes of Tom Kindlon and Alem Mathees and all the others who have kept going, in the face of ridicule, disbelief and outright lies. In the face of their condition their efforts and the sacrifices they have made are easily the equivalent of a trek to the pole, climbing the north face of the Eigar or winning Olympic gold medals in my eyes.

One day I would dearly love to see a great big shiny plaque outside the door, or in the entrance hall of the biggest medical education establishment in the land with the names of these guys on it. As a mark of gratitude from their fellow patients and as a reminder to medical students of the damage and injustice that can be done in the name of ignorance and intolerance and putting your own ego before the interests of your patients.

 

[Snow Leopard]

 

[Orla]

I loved this paper. So many brilliant parts. Some of my favourite quotes:

This is brilliant. As well as the quotes others have mentioned I really liked this:

"The defence that the trial was peer reviewed by the Medical Research Council is no argument; it appears just to indicate that ignorance of methodological principles is widespread in the British medical establishment (not to mention the editor of a high-profile journal)"

"The central problem is that it is very difficult to find therapists who have no prior commitment to the validity of certain techniques. White et al. argue that it would be inappropriate for trials to be performed by disinterested parties. Geraghty’s suggestion may be impractical, but I do not see it as misguided. White et al. argue that ‘The clinicians amongst us have dedicated their careers to care for thousands of patients with CFS/ME and we always want the best for them’. It is precisely this sort of emotionally laden justification of ‘those of us who know best’ that needs to be removed from trial design. The way that human nature creeps into the research environment is something all too well known to physicians and pharmacologists. It seems strange that it should be unfamiliar in psychological medicine."

And even though it has been quoted already, this was great:

"I think the claim that the effects of CBT and GET were maintained at two and a half years (Sharpe et al., 2015) is worth challenging again because it is not what any reasonably intelligent person would conclude."

 

[MEisnotMUPS]

Thank you prof. Edwards for a great article.

For those who have not seen how far in denial the PACE authors are, they (White, Sharpe, Chalder) are now even reacting to a local Dutch Maastricht University Magazine interview with prof. Cohen Tervaert (immunologist/internal medicine specialist). Prof. Cohen Tervaert is on the Dutch Health Council Committee writing an advisory report on ME (unfortunately so are many BPS proponents/Dutch PACE colleagues, which is why the Dutch started this petition: https://meisgeensolk.petities.nl/?locale=en)

David Tuller, Mark Vink (GP and severe ME patient, wrote 2 articles on PACE, one of them includes reanalysis of the data) and Carolyn Wilshire (lead author PACE reanalysis paper with Kindlon and McGrath, Matthees) all replied to the PACE authors ...see links below the article.

http://www.observantonline.nl/Home/...w/articleId/12101/Myth-busting-a-myth-busting