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

[char47]

@Jonathan Edwards @Tom Kindlon @charles shepherd .. et al .. and to all at JHP & Sage Pub too...

I cried when i read these pieces. I just cried.
With gratitude.
And with hope.
It really might all be going to turn around eventually. It really might.
I just cant believe it's true, there might actually be reason to hope
God bless the lot of you

 

[Sandman00747]

Are Wessely, White, Chalder, and crew also closet members of the " Flat Earth Society?" From my view over in the states this entire debacle seems more like it should have come out of North Korea or Libya, not a country so advanced and civilized as Great Britain! It is so preposterous! I guess Wessely has now assumed what we in the states call " The O.J. defense. Lie 'til you die." Pathetic. But, sadly, it's worked for O.J. for a long, long time!

 

[BurnA]

But, sadly, it's worked for O.J. for a long, long time!

If Wessely ends up like OJ I'll be happy.

 

[Jan]

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’.

Very very creepy. I'm sorry but I don't believe you. I don't believe you care at all.

I don't believe any one of you actually want to help ME patients. You refuse to listen, how can you learn if you don't hear our stories, and there is so much still to learn about this disease? Our decades of suffering remain unheard, we tell you exercise makes us worse but still you insist on your GET.

Why do you refuse to acknowledge all biomedical research, why do you refuse to attend research conferences? You know nothing about this illness due to continued willful ignorance, yet you state your beliefs as facts and have torture treatments forced onto us to try to prove your point. You must be right at any cost. You have harmed thousands of us, many permanently.

You've known for a long time that it's harming us, but what have you done to protect further patients, including children from harm? Anything, nothing? Can you really look yourself in the mirror and say you've done your best, you really cared, you stopped the harm?

I hope your God is forgiving.

 

[dangermouse]

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

Why can the PACE authors not just admit that they got it wrong. I don't understand how they can justify defending PACE. Surely patients should come first in any caring profession? A huge number of very ill patients who have ME just want to be feeling better, to reclaim their life (imagine that). I just don't understand why these people (PACE) can't step aside and allow research and funding to go where it is so desperately needed.

 

[Barry53]

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.

I have encountered plenty such people (as no doubt many other good folk here have) and it strongly indicates a deeply unpleasant personality type. I think these people should have undergone some sort of personality profiling before being let loose on safety critical research. Oh ... wait a minute ... they would do their own personality profiling of course. No doubt would collect the data, but then murder it to show what sweet little innocents they all are, and butter wouldn't melt in their mouths (well it probably wouldn't melt in their hearts).

 

[Barry53]

I don't see how you could be a tenured professor of psychiatry and not know basic things like this.

I think they must know - they just don't give a sh*t.

 

[Barry53]

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?

I have a home spun theory about such people (but please note it is purely my own conjecture, derived from experience and lots of navel gazing).

Our minds cannot directly engage with the real world, so I think that each and every one of us must hold in our minds an operating model of what we perceive the real world to be ... and it is that which our minds interact with. Most people's model holds the concept of truth and therefore lies, and their actions are strongly driven by this, including those who maybe lie more than most would like.

But I think there is another operating model that certain personality types have, which is quite alien to most of us. I do not think this model includes the notion of truth, and thereby also not the concept of untruth. Instead I believe their strong motivational drivers are based on cause and effect - what actions must they do in order to achieve an effect they wish to achieve. Sometimes such actions will coincide with what we see as the truth, at other times with what we see as lies. But I do not think these people sense the world like this, it is just about cause and effect; I think the concept of truth and therefore lies is completely alien to them.

 

[daisybell]

@Barry53 I had a boss like that once- she is one of the few amoral people I have ever met.... she lied about me to my potential new employer when I left her employment, whilst telling me I had her blessing - then cried when I called her out on it... people like that lie, cheat, steal etc without any compunction just because it suits them, and they genuinely don't seem to see the problem.

 

[Barry53]

@Barry53 I had a boss like that once- she is one of the few amoral people I have ever met.... she lied about me to my potential new employer when I left her employment, whilst telling me I had her blessing - then cried when I called her out on it... people like that lie, cheat, steal etc without any compunction just because it suits them, and they genuinely don't seem to see the problem.

There is another tactic they are extremely good at - playing the victim. The PACE crew play that part to perfection also.

 

[Sandman00747]

I have a home spun theory about such people (but please note it is purely my own conjecture, derived from experience and lots of navel gazing).

Our minds cannot directly engage with the real world, so I think that each and every one of us must hold in our minds an operating model of what we perceive the real world to be ... and it is that which our minds interact with. Most people's model holds the concept of truth and therefore lies, and their actions are strongly driven by this, including those who maybe lie more than most would like.

But I think there is another operating model that certain personality types have, which is quite alien to most of us. I do not think this model includes the notion of truth, and thereby also not the concept of untruth. Instead I believe their strong motivational drivers are based on cause and effect - what actions must they do in order to achieve an effect they wish to achieve. Sometimes such actions will coincide with what we see as the truth, at other times with what we see as lies. But I do not think these people sense the world like this, it is just about cause and effect; I think the concept of truth and therefore lies is completely alien to them.

That's very astute @Barry53. I tend to call this kind of thinking sociopathic!

 

[lilpink]

There is another tactic they are extremely good at - playing the victim. The PACE crew play that part to perfection also.

I'd change places to be that sort of 'victim': the healthy sort . I hope I'd use my time on this planet more wisely however.

 

[Barry53]

I tend to call this kind of thinking sociopathic!

Quite so

 

[Barry53]

Its here
PACE team response shows a disregard for the principles of science


Jonathan Edwards
http://journals.sagepub.com/doi/full/10.1177/1359105317700886

This PACE analysis hits some very important spots that other papers have come close to, but not quite highlighted. And it is written in a way that will click with a wide demographic, helping people see the wood despite the trees, and not getting bogged down by minutiae. Normal rational people cannot help but see the truth and immutable logic in here.

Much of the overall problem is that there are many very decent responsible professionals and influential decision makers, who have been completely taken in by the PACE authors and similar. Good decent people often are prey to such influence, because these predatory people are incredibly convincing to those not fully in the picture. And there is a sort of hysteresis effect - once fully convinced, it then needs a disproportionately greater influence the other way to sway these decent people out of the spell-like belief that has become embedded into them.

I think this paper is a really important contributor to help break the spell, and I really believe it needs to get seen by as many people and organisations as possible. I really do.

Congratulations @Jonathan Edwards.

 

[arewenearlythereyet]

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.

I'm not sure but when I was at school the people who studied sociology were people who did well in the humanities rather than hard science. It would be interesting to see what A levels these people did before going to university

I learnt about experimental design when I went to school and the importance of bias but I took biology, chemistry and geology? I think the rot starts at the faculty in the university though rather than at school.

 

[Barry53]

I'm not sure but when I was at school the people who studied sociology were people who did well in the humanities rather than hard science. It would be interesting to see what A levels these people did before going to university

I learnt about experimental design when I went to school and the importance of bias but I took biology, chemistry and geology? I think the rot starts at the faculty in the university though rather than at school.

I also suspect that to some degree psychiatry may have developed its rules as it has gone along, self-fulfilling prophesies playing their part.

I find myself having somewhat dichotomous feelings about psychiatry. I know for sure there are some brilliant professionals out there, who help people through terribly difficult times. These people are very dedicated and have great integrity. But I also feel psychiatry has, in some ways, a very middle ages mind set. Completely up themselves in their arrogance of how right they must be, almost perceiving their discipline akin to a religion.

 

[arewenearlythereyet]

I also suspect that to some degree psychiatry may have developed its rules as it has gone along, self-fulfilling prophesies playing their part.

I find myself having somewhat dichotomous feelings about psychiatry. I know for sure there are some brilliant professionals out there, who help people through terribly difficult times. These people are very dedicated and have great integrity. But I also feel psychiatry has, in some ways, a very middle ages mind set. Completely up themselves in their arrogance of how right they must be, almost perceiving their discipline akin to a religion.

I couldn't agree more.

One things for sure, the seriousness of this episode means we need better practice in psychiatry to help people in need.

I think the irony is we are talking about bias in experimental design, a large part of which comes from the power of suggestion/human behaviour. The authors of pace clearly understand this bias since they deploy techniques to utilise it to get their way.

I wonder whether this lack of scientific discipline is born out of the teaching being too theoretical/philosophical. Theory is always a little detached from reality and professions that look at humans under the microscope are always going to detach themselves from the patient.

Perhaps there should be more balance by putting more influence on teaching patient care and objective based therapy and insisting that they have scientific method taught at colleges.

I'm speculating, but perhaps less on the history of psychiatry? I studied biology at university in the 80's including genetics but there was no mention of Darwin or even Mendelian genetics since things had moved on (molecular biology, cell biochemistry etc). All of which is probably well out of date today since the mapping of the human genome.

I suspect that psychiatry dwells on outdated theory and their syllabus doesn't change much over the decades.

 

[Tom Kindlon]

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.

Thank you very much. Lots of people have played a part over the years.

 

[Karen Kirke]

I’d like to shake the hand of the person who had the idea to ask you to advise on research strategies for ME/CFS.


Bits I really like:


“the central problem…the combination of lack of blinding and subjective outcome measures” (p.2, italics in original)


“it makes no sense to say that if you cannot work out how to do a reliable study then an unreliable study can be taken as reliable” (p.2)


“the irony is that what appears least understood by the defenders of PACE is that its problems stem from what one might call human nature, or in jargon terms ‘psychology’” (p.2)


“Whenever bias can creep in, it will. The only solution is to design it out of the study from the outset.” (p.3)


“I think it is a matter of concern that White et al. (2017) reject out of hand the possibility that the ‘actions [of the PACE authors] have arguably caused distress to patients’. They have. Distress is very evidence among the patient community, as much as anything in terms of the insult to their intelligence made by insisting that seriously flawed research is in their interest.” (p.3)


“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.” (p.4)


I think there’s a general problem with health professionals assuming, perhaps because of their good intentions, that their treatment can only help or not help, but that it could not harm, if done ‘right’, and resisting evidence to the contrary. I saw this from the health professional side in my work, and quite spectacularly from the patient side too. It leads to not building safeguards (sometimes any, sometimes adequate) into practice or research to catch that harm, and so not finding that harm, and so reinforcing the false belief that harm is not possible. This blindspot is then reinforced by the traditional patient’s assumptions that the health professional who is caring for them is dispensing an effective treatment and would never prescribe something that would be harmful (i.e. not just a temporary unpleasant side effect).


I think this is a source of alienation within the health professional-patient relationship – the patient has to draw back for their own safety when they realise that the health professional not only sometimes does harm, but can’t accept that reality. I think when a health professional inadvertently does harm and owns it, the relationship is preserved.



I remember a concept that was introduced during my training (as a Speech and Language Therapist) – it was “unconscious incompetence”. The idea was that when, as a health professional, you don’t know that you don’t know, you’re dangerous. The other permutations are safe – conscious competence, conscious incompetence, unconscious competence. It was really hammered home to us to be mindful of that blindspot. But a bit of humility would do the same job, just knowing that, like other humans, you will make mistakes, that even when your intentions are good, you can do harm, and that you won’t necessarily be aware of that harm.



Believing the patient would also work. Maybe the problem for some is that you can't believe a patient who you believe to have false beliefs. To do that, you'd have to be open to the possibility that your own belief might not be the truth, the whole truth and nothing but the truth.

 

[Sean]

The real problem for them is not actually PACE, though that it is what will bring them down.

The real problem for them, the thing that is really going to finish them off, is that they went in way too hard, way too early, starting back in the late 80s, long before their hypothesis had been tested properly, or even tested at all.

PACE, the "definitive" test of that hypothesis, was only set in motion around the mid-2000s, about 15 years after they first started making their bold unambiguous claim, and started ruthlessly and effectively inserting it into the core of clinical, educational, media, and policy advice at every opportunity. Furthermore, PACE did not start reporting outcomes until 2011, which extends the lack of results from adequate hypothesis testing out to nearly 25 years.

They also used ME/CFS/FM, etc, as a Trojan horse to widen their claim to cover all of society, and encouraged it to be used by government and commercial interests to justify some very dodgy and nasty policies and practices indeed, that not only continue to this day, but are rapidly getting worse (and exactly the same thing is now happening in Australia, a straight copy of how the UK has been doing it).

From the start they were absolutely sure that they were right, and that the evidence would eventually catch up and confirm their hypothesis, and make heroes of them.

The evidence caught up alright, but it didn't confirm it. Indeed, the evidence is increasingly disproving it.

And all along the way there were patients, and others, clearly pointing out the problems with their approach, and warning of the consequences. But they just kept doubling down and charging on even harder and blinder.

All this is on the formal and informal public record.

They, and their enablers and clients, are going to have to answer for it. Sooner is better.