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PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe et al.

Gijs

Senior Member
Messages
690
There was certainly something unpleasant in the tone of the article to which Wilshire et al are responding. There is also something unpleasant in the tone of the reviewer's comments. There was something unpleasant about White's presentation in Bristol at the CMRC. There is something very unpleasant about PACE supporters ringing up the employers of PACE critics, presumably in an attempt to dislodge them from their employment. There is no doubt where the unpleasantness lies. The obsession is on the part of those trying to defend a very bad study come what may. And that would not be an obsession in the psychiatric sense because in the psychiatric sense there is by definition a sense of guilt with it.

You nailed it again! :)

I really start to think what drives people like White, Wessely, Chalder e.a. what are their intensions?
Is it fame? Is it money? Is it prestige? Is it arrogance? Or are they really delusional? Their flaws in the Pace study are so obvious. I come to the conclusion that these people are very dangerous for science and the health community.
 

CCC

Senior Member
Messages
457
My belief is that White et al. are driven by this:
  1. Get 5 million pounds to do a study (about AUD10-15 million at the time!) - it probably took years of lobbying to get funding like that in the modern research funding climate.
  2. Start to see it won't deliver certain results
  3. Panic
  4. Redefine study outcomes so there is something to show for all that money
  5. Publish carefully and selectively - it would be humiliating to admit failure at this point
  6. Believe their own propoganda and push down any nagging doubt about their own positions.
  7. Fight any and all opposition through ridicule and suppressing data release.
  8. Panic - a rational person would stop digging the hole deeper about now
  9. But they keep digging
  10. The criticism keeps coming in and they seem powerless to stop it.
  11. Circle the wagons.
  12. Fight to the death.
We're now somewhere between 11 and 12.

I feel a bit sorry for them in the sense that I've seen it before, but with less money and lower stakes. External funds for research always put on a lot of pressure for certain results. In real science, getting a 'no' is just as good as getting a 'yes', but not when so much money and with it, reputation, are involved.

How would you like to get so much funding to prove something works, and then find you can't deliver?
 

Molly98

Senior Member
Messages
576
I find it very weird particularly the bottom paragraph of the reviewer.

Some people do have severe mental health conditions where irrational fears become completely disabling. I don't think anyone is disputing that, nor are they questioning the reality of living with such a condition or the level of disability or distress those thoughts and fears can cause them. These people do need the help of a psychiatrist, psychotherapist and /or psychiatric medication.

But the idea that we have a fear of activity or exercise and that disables us is wrong. Not because we don't want to be labelled as having irrational fears or a mental health condition but pure and simply because it is wrong.

You can not say a small number of people are so severely disabled by their fears means therefore that any disability is a result of irrational fears. This is a truly nonsensical approach surely.

My own experience of this illness is that in the very early stages there were a lot of fears and anxiety because I did not know what was wrong, medical professionals did not know what was wrong and it was so severe in how it affected me that it felt something must be seriously wrong.

In my experience, as the years have gone by, I don't have fears around my illness. I used to fear not being able to work, losing my friends, my career, myself, my former life, these fears are gone now as the losses have already happened, sadness yes but fear no.

I do not have a fear of doing exercise and activity just a very pragmatic, realistic, common sense attitude that if I do this today it has this effect, therefore if I want to do this or manage that tomorrow or later in the week I need to limit or not do this activity or I will put myself out of action for 2 days. I avoid making myself more unwell, in the way someone with a peanut allergy avoids eating peanuts or someone with lung disease chooses to stop smoking, they don't want to make themselves worse, they want to give themselves every chance to improve. I make a rational informed choice not to do aerobic activity or activity beyond my limits, not fear based at all, common sense given what we know of research and our own bodies and this illness.

I personally am getting very tired of this continual play by Wessely and co to spin our attitude as being anti-psychiatry and hostile and judgemental to those suffering from mental health conditions, I find this ugly and distasteful.

Having PTSD I have no problem in accepting I have difficulties with my emotional, psychological health, I have had therapy of various kinds and take medication to manage it. If I can accept this diagnosis, it wouldn't really make sense that I refuse to believe ME is psychologically based disorder.... except because it is not and that is why I resist this interpretation, because it is pure and simply wrong.

I have not come across one person on this forum or within the ME community that has EVER treated me differently, unkindly or formed judgements about me because of my mental health condition. Quite the opposite, and far less than mainstream society. Perhaps because ME patients suffer themselves they are generally more acutely attuned to the suffering of others, in the same way, that they have been on the receiving end of prejudice they are more aware not to inflict it on others.

This idea of Wessley and co that they seem intent to keep repeating until it sticks, that ME patients have a problem with accepting a mental health diagnosis because they have a prejudice against people with mental health problems. Along with the desire ( Wessely and co) to portray themselves as the heroes and protectors of mental health patients ( and those ME sufferers prepared to submit and accept the psychological nature of their ME) and therefore the compassionate understanding ones who need to stand up for people with mental health conditions against the prejudice of ME suffers, quite frankly makes me sick and repulses me.
 

CCC

Senior Member
Messages
457
@Molly98 They're circling the wagons and ready to fight their last stand. Even if they manage to survive long enough to flee to a rocky outcrop, they're still putting off the inevitable.

The pressure now should all be on The Lancet to withdraw the paper - through letters, publications in rival journals etc.

In Australia, we'd be having MPs from all sides to make statements to get the whole thing documented in Hansard. A good question on notice, if the UK has those, would be to ask the Minister for Health what steps he is taking to investigate ... a whole heap of things to do with PACE. Does he consider it effective and efficient use of public funds? Has the Department (or agency in the portfolio) reviewed the guidelines for treatment as a result of recent publications? And so on.
 

Molly98

Senior Member
Messages
576
@Molly98 , would have 'liked' that post 100 times if I could have, you put it brilliantly. By the way, love the new pic too!
Aww thank you @SamanthaJ . While I am far less glamorous than Holly Golightly /Audrey Hepburn,( with my unkempt hair and comfy pj's) I am often to be found in bed with eye mask on with one cat or other ( we have 3, one being ginger) perched on my back, tummy or side so the image seemed quite appropriate :)
 

Art Vandelay

Senior Member
Messages
470
Location
Australia

Words fail me. I thought scientists were supposed to be rational, dispassionate and objective?

This just reinforces my observation that we are not dealing with science. We are in fact up against a pseudo-scientific cult which will not accept any challenge to its belief system.

This (un-named) reviewer should be ashamed of themselves.
 

anciendaze

Senior Member
Messages
1,841
The elephant in the room which defenders of PACE continue to try to ignore is that this trial, which was said to be showing a way to deal with a public health problem, never came close to showing any of the changes for which it was funded in the vast majority of patients referred for treatment. It scarcely matters if you can choose a handful of patients from 3158 who might (or might not) have benefited from proposed therapies. In terms of solving the problem for which they were funded they failed abjectly. They can't show the return to work the DWP would like. They can't show the reduction in the need for care the NHS would like, even in their study cohort. From a purely economic standpoint this was a categorical failure.

The only way I can imagine to continue to argue for these interventions is to claim the patients they did not study would be more likely to benefit than those in their cohort. The fact that this would undermine their claim to diagnostic acuity is a problem for them. They claim to have carefully selected the patients best suited to proving their hypothesis, which would then be extended to treat the entire intake of "CFS" patients in the U.K. Their basis for claims of diagnostic uniformity of the condition called "CFS" looks remarkably weak to me. However, if we extend their results to the entire national cohort of patients diagnosed with "CFS" by NHS doctors we would quickly see the treatment results are not worth the cost. Even subjective treatment results are transitory, the illness is not. You don't even need to use subtle points of statistical reasoning to reach conclusions about costs to society of most interest to governments.

This entire argument is independent of concern for "those damned patients" who say they are made worse by exercise, and does not require looking at work by American researchers who measure abnormal metabolic changes in patients.
 

anciendaze

Senior Member
Messages
1,841
I just came back to finish the post above, and found people had already read and "liked" it. For that reason this is a separate post, which they may or may not "like".

An unstated reason for MRC and DWP to fund this study was to silence critics. The fact that we are still having this debate shows how badly that failed. I would advise those in the corridors of power to be cautious about listening to people who got millions of pounds to create the current situation.

While there was interest from the very beginning in the study of distortions in cognitive processes of patients, there has been remarkably little concern for the cognitive processes of researchers. For those who are perplexed about how anyone can defend their mess I offer a simple hypothetical thought: "those patients should get better, and if they don't it is their own fault."

When this attitude meets actual data, the response is best characterized by the immortal words of Rhett Butler: "Frankly, my dear, I don't give a damn."
 

Cheesus

Senior Member
Messages
1,292
Location
UK
You nailed it again! :)

I really start to think what drives people like White, Wessely, Chalder e.a. what are their intensions?
Is it fame? Is it money? Is it prestige? Is it arrogance? Or are they really delusional? Their flaws in the Pace study are so obvious. I come to the conclusion that these people are very dangerous for science and the health community.

As Upton Sinclair writes: "It is difficult to get a man to understand something when his salary depends on his not understanding it."
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
While there was interest from the very beginning in the study of distortions in cognitive processes of patients, there has been remarkably little concern for the cognitive processes of researchers.
Write a satirical paper on this. From the POV of magnanimity towards these poor beleaguered souls. I think the right piece of satire could be very effective at this point.
 

Large Donner

Senior Member
Messages
866
Can anyone enlighten me as to what a "fearful cognition" might be, and how it might be distinguished from "fear"?

Fear is what one might show in their shaking hands if they nearly got run over by a train. "Fearful cognition" is what one might invent with a show of hands if they were part of the APA gravy train.
 
Messages
3,263
My belief is that White et al. are driven by this:
  1. Get 5 million pounds to do a study (about AUD10-15 million at the time!) - it probably took years of lobbying to get funding like that in the modern research funding climate.
  2. Start to see it won't deliver certain results
  3. Panic
  4. Redefine study outcomes so there is something to show for all that money
  5. Publish carefully and selectively - it would be humiliating to admit failure at this point
  6. Believe their own propoganda and push down any nagging doubt about their own positions.
  7. Fight any and all opposition through ridicule and suppressing data release.
  8. Panic - a rational person would stop digging the hole deeper about now
  9. But they keep digging
  10. The criticism keeps coming in and they seem powerless to stop it.
  11. Circle the wagons.
  12. Fight to the death.
We're now somewhere between 11 and 12.

Think that just about sums it up nicely, @CCC! I have to admit that I have sometimes even felt a little sorry for the PACE authors. But when they do the old cloak-and-dagger trick to hide the real problems being identified, that feeling pretty much goes away.

Certainly, there are a few fearful cognitions flying about amongst BPS apologists now, and they sure were leaking through in that journal review.
 

A.B.

Senior Member
Messages
3,780
Hopefully we can expose the entire story, not just PACE. The entire story is that they've been terrorizing patients for 25 years with their bizarre views, political games and bad science.

They need to removed from any positions where they can continue to hurt patients.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
All of the very good comments here just have me scratching my head about one particular thing though.
All of this is reasonable and CCC's description likely true. So why oh why would Sir SW at this late date haul out the old terrorist line of ME sufferers? Surely at this late stage it seems less murderous on our part and more suicidal on his.

The only possible explanation I can imagine so far is that HE really hates us that much for not conforming to the BSP premise of why we're sick.
 
Messages
1,478
All of the very good comments here just have me scratching my head about one particular thing though.
All of this is reasonable and CCC's description likely true. So why oh why would Sir SW at this late date haul out the old terrorist line of ME sufferers? Surely at this late stage it seems less murderous on our part and more suicidal on his.

The only possible explanation I can imagine so far is that HE really hates us that much for not conforming to the BSP premise of why we're sick.
Desperate people do desperate things. The fact that he has a position of authority and is clearly a sociopath means he can't do anything other than fight on until it's done. He knows he is circling the drain, but his own ego won't let him truly admit it. It will take someone else to give him the final push I think.