Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

[taniaaust1]

Simon Wessely, president of the UK Royal College of Psychiatrists, defended the trial in an email exchange with me. He argued that some patients did improve with the help of cognitive behavior therapy or exercise, and noted that the improvement data, unlike the recovery data, was statistically significant. “The message remains unchanged,” he wrote, calling both treatments “modestly effective.”

Wessely declined to comment on the lack of recovery. He summarized his overall reaction to the new analysis this way: “OK folks, nothing to see here, move along please.” /

of course Wessely wants everyone to "move along" and not take a look at the true PACE results as after all built his carer on GET and CBT and even got a knighthood for pushing these therapies onto us when we knew they dont work and make many of us worst.

 

[Kati]

Or perhaps there is a special kind of denial when confronted with the fact that your life's mission was a lie.

The psychiatry society or SMC may have a special bravery prize for White and all of the authors 'bullied by the patients'- making their work so much harder and on top of that they were sent all these vexatious FOI requests. Total hardship, I tell you.(dripping sarcasm)

 

[Sidereal]

I expect knighthood for White after all this is said and done.

 

[taniaaust1]

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I was on the Trial CBT. I asked for the SMC several times cos I wanted to discuss things like symptoms I had and how to deal with them like pain. Never got it. Ended up thinking the signoff to the Trial session was the SMC, it wasn't. The person running that session was the SMC person so tried to help but it was a bit of a muddle. Bascially he said 'try to take fewer pain killers' in response to my 'why aren't the pain killers working? is the pain real? are they the wrong ones? (basic paracetamol).

Oh I also got given a book before I went on the Trial that the Centre Director said SMC people were given.

So as far as I can see SMC was pretty much 'real world' in that no-one bloody listened or had any useful input! Not sure what was supposed to happen though.

Nothing at all is probably standard care for up to half of us.

As those CBT and GET proponents believe this illness is mostly in our heads, it makes sense their standard treatment would be try to cut you down on meds such as painkillers (though I personally do not think that in itself is standard care as standard care usually would encourage pain killers if needed).

But if they had encouraged pain killers for pain etc rather then trying to get people off their meds, maybe their standard care results would of then proved to be much better then the CBT and GET (but gee they couldnt have had that happen could they!), so it makes sense too for them to do poor standard care so the CBT and GET would look better.

 

[Kati]

I expect knighthood for White after all this is said and done.

Was wondering about that, and wondering whether it would be before or after they have to reimbourse the UK the 5,000,000 £ and 250,000£ in legal fees.

 

[taniaaust1]

This is so disgraceful that it must surely guarantee White a knighthood.

Now what about Esther and the children.....??????

I nominate White for the toilet award. We need an award for shit studies

 

[taniaaust1]

does it look like a fraud or is it just incompetence?

Definately fraud, why change all the things they did otherwise and fight as hard as they did to try to make sure it couldnt be reanalysed. In my eyes they proved, they had something to hide by this.

 

[Sean]

The PACE authors are likely so invested in the explanatory power of their hypothesis (the BPS model) that they turn to methodological factors to explain their null result. Somehow, in their minds, the applied methodology failed to extract the "truth" from the data, and so their methods of statistical analysis needs refining.

They are now in the bargaining phase, with the depression and acceptance phases to still get through.

 

[taniaaust1]

But that level of incompetence is really just as damning as deliberate fraud would be. In either case, it shows that the PACE authors weren't capable of behaving as trustworthy scientists. And in either case, all of their research (and other publications) needs to be closely scrutinized.

good point. I hadnt thought of that and if they were as willing as they were to mislead in such a big way, how many other of their papers have they been deceptive on. Time to have all their papers carefully reanalysed

 

[taniaaust1]

Also, I'm curious what the implications are as the the psychiatric treatment of fatigue in general. It seems clear that a significant proportion of patients included in PACE had unexplained chronic fatigue type disorders, but we can no longer put any success rates down to their own response, because there is no success rate.

Does this mean that Chronic Fatigue as a disorder is simply untreatable?

I guess it just means that a lot of chronic fatigue isnt treatable like that, which to me does make sense as I dont think people who are chronically fatigued are like that for no reason at all.

To me chronic fatigue is an indication that something is actually wrong with their health which needs to be fixed and of cause if it isnt something like depression it can only be something physically wrong eg obesity, nutritional issues, a different missed medical issue etc etc. So giving them talk therapy and exercise wont fix maybe even most just chronic fatigue cases (not refering to even CFS)

That patient group when the day comes that ME is being used and clearly defined, they could use this bad CFS study to help support not to get these therapies pushed onto them.

This must so suck to the CBT and GET proponents to have a study using poorly defined CFS patients not make their treatments look good.

 

[Woolie]

Also, I'm curious what the implications are as the the psychiatric treatment of fatigue in general. It seems clear that a significant proportion of patients included in PACE had unexplained chronic fatigue type disorders, but we can no longer put any success rates down to their own response, because there is no success rate.

Does this mean that Chronic Fatigue as a disorder is simply untreatable? Or dies it perhaps mean that the behaviourist method of treating people like machines without having recourse to their personal circumstances is dying on its arse.

I think it means there are two forms of fatigue. One that is secondary to depression, and one that occurs independently of depression. Since the PACE study only looked at fatigue that didn't occur alongside depression - the second kind - the behavioural treatment wasn't effective.

I think this also means that fatigue, on its own, is a poor indicator of psychiatric illness (e.g., depression), because it can be a consequence of many things. It can be doubly misleading when the fatigue is so bad that the person is really distressed because of it. Easy to confuse cause and effect. I think fatigue as a symptom needs to be removed from all diagnostic criteria and scales for measuring depression because of this.

 

[A.B.]

PACE shows that patients with unexplained persistent fatigue (Oxford criteria) do not benefit from a psychobehavioural intervention that attempts to persuade them to think and act like a healthy person. The implication is that the fatigue is not due to psychobehavioural factors.

If psychiatry were honest they would attempt to better understand who will actually benefit from psychobehavioural interventions. Since they are not, they will continue to beat the dead hypothesis, err horse.

 

[chipmunk1]

I expect knighthood for White after all this is said and done.

I think at least in theory it would be possible that they could go to jail if it turns out the research they did was fraudulent.

It won't ever happen in the real world probably.

If you do knowingly publish misleading, grossly misleading research and use it to promote your ideas to influence health policy which results in millions of taxpayer funds being allocated to your cause while benefiting financially from it - Didn't they sell courses and run clinics? There were some rumors that they were getting funds from the insurance industry as well- you are essentially defrauding taxpayers and the government. We could be talking about millions.

People have gone to jail for less.

 

[Jill]

If this had been a drug study, the drug would be being recalled . The same should apply . Retraction is the only answer

 

[Sidereal]

PACE shows that patients with unexplained persistent fatigue (Oxford criteria) do not benefit from a psychobehavioural intervention that attempts to persuade them to think and act like a healthy person. The implication is that the fatigue is not due to psychobehavioural factors.

If psychiatry were honest they would attempt to better understand who will actually benefit from psychobehavioural interventions. Since they are not, they will continue to beat the dead hypothesis, err horse.

I've always thought that the critiques focusing on the Oxford case definition were the weakest arguments against PACE. If anything, this trial actually shows that CBT and exercise are ineffective for chronic fatigue of whatever aetiology. Even assuming that some of the participants in this study had depression, not ME/CFS, CBT and GET still didn't work. It only produced mild transient response bias on subjective questionnaires at one-year follow-up which did not persist at 2.5-year follow-up, no effect on objective outcomes, and no effect on recovery rates.

 

[Marky90]

Golden comment hahaha

 

[trishrhymes]

I've always thought that the critiques focusing on the Oxford case definition were the weakest arguments against PACE. If anything, this trial actually shows that CBT and exercise are ineffective for chronic fatigue of whatever aetiology. Even assuming that some of the participants in this study had depression, not ME/CFS, CBT and GET still didn't work. It only produced mild transient response bias on subjective questionnaires at one-year follow-up which did not persist at 2.5-year follow-up, no effect on objective outcomes, and no effect on recovery rates.

Good point. This surely means all their attempts to justify GET and CBT as treatments for any medically unexplained fatigue of whatever aetiology is dead in the water. This implies that the treatment was based on a FALSE model of illness, the biopsychosocial model, so they've killed off the whole goose that's been laying golden eggs for them for so long. They've cooked their goose, it's a dead goose, it is no more.

 

[Nielk]

Good point. This surely means all their attempts to justify GET and CBT as treatments for any medically unexplained fatigue of whatever aetiology is dead in the water. This implies that the treatment was based on a FALSE model of illness, the biopsychosocial model, so they've killed off the whole goose that's been laying golden eggs for them for so long. They've cooked their goose, it's a dead goose, it is no more.

Based on the fact that some patients were included in the cohort based on the Oxford criteria, there must have been patients who suffered from psychological or psychiatric reasons for their fatigue. It is surprising then that the results did not show a more remarked improvement for those patients.

 

[Large Donner]

@Woolie thanks for the explanation of the latest White et al drivel.

I do really wonder if they will now move onto "well its the fear avoidance that is stopping them from benefiting from CBT and GET and that's what we proved in the PACE Trial using our proven treatments. Treatments should now work on improving techniques to avoid fear avoidance".

 

[adreno]

They'll continue by designing future studies to show the outcome they want, by using their "refined" methodology. They've learned all the pitfalls to avoid from PACE. They won't make the same mistake twice.