Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

[Cheshire]

AAArghghg!! Better for those who want to make money from claiming expertise over patients maybe? Shouldn't patients have a say over what is 'better' though?

Thanks for contacting him.

I can't stand anymore these patronising morons who think they have the right to not tell the truth, supposedly for the sake of the patient, in fact to avoid to appear ignorant.

If they just listened to the patients they'd know which answer they prefer.

Makes me really angry, I concur with your AAArghghg!!

 

[Snow Leopard]

how it is better to have something to recommend rather than admitting you do not know what is best...

Let me guess, this was the last argument he put forward (and likely the real reason why he has taken a pro-PACE position). It seems the position that these people are taking is not about the facts, it's about deliberately providing false hope for treatment for a condition that has no worthwhile treatments so far. It's about the feelings of the physicians, not the patients...

He probably doesn't know that the changes in outcomes were made because the authors were very worried they were going to get a null result, after the "sister trial" FINE had a null result.

 

[Molly98]

Even when 1000s of patients are complaining it is harming and disabling them? What happened to do no harm? Or did he forget about that? Ethics and morals appear to go out the window when it comes to ME patients, or at least ego takes priority.

 

[dangermouse]

Even when 1000s of patients are complaining it is harming and disabling them? What happened to do no harm? Or did he forget about that? Ethics and morals appear to go out the window when it comes to ME patients, or at least ego takes priority.

It is disgraceful.

 

[Stewart]

Sorry to disappoint MEMum but I did contact him and he is all bright breezy on gunning for PACE which he knows every detail about and still thinks is the best evidence available. He came out with a whole lot of irrelevant stuff about how difficult it was to do studies, how it is better to have something to recommend rather than admitting you do not know what is best... It seems that his inaugural is just spin. It is easy to appear to be an energetic new broom sweeping things clear. Just read out what the textbook says on what not to do. Then go home and do it all over again. The lecture title makes me think of one the words used by James beginning with H.

To be fair to Prof McCleod, you did put him in an extremely difficult decision with your pointed questions Jonathan. On the one hand, there's his publicly-stated and passionately-held commitment to rigorous, unbiased evidence-based research. On the other.... well, apparently his wife used to have an office very close to Michael Sharpe's.

I think we can all appreciate the long and sleepless nights he must have experienced as he tried to weigh up which of these two conflicting - but apparently both deeply consequential - considerations was of paramount importance to him.

 

[Quilp]

The Wessely school are determined to convince that CBT and GET will cure us.........even if it kills us.

 

[Large Donner]

You don't need to know what the data says to know that relaxing the outcome criteria is going to improve the outcome from that data.

Wessely knows that, he even said that's why they did it.

 

[Jonathan Edwards]

Let me guess, this was the last argument he put forward (and likely the real reason why he has taken a pro-PACE position). It seems the position that these people are taking is not about the facts, it's about deliberately providing false hope for treatment for a condition that has no worthwhile treatments so far. It's about the feelings of the physicians, not the patients...

He probably doesn't know that the changes in outcomes were made because the authors were very worried they were going to get a null result, after the "sister trial", FINE had a null result.

I think it was probably the last.
I was struck by the naivety of it really. The alternatives seemed to be to send the patient to a therapist or to send them off home to try to cope in the knowledge that the doctor did not really know what was best.

In the old days there was a third option - which present day NHS physicians may never have come across. You told the patient you did not know what was best but suggested seeing how things went with some suggestions discussed but not prescribed, THEN you saw them again and listened again to see if anything new suggested a change of plan or more tests and discussed some more things and repeated the process and THEN went on doing the same thing on a regular basis for 20 years; and with luck after 5 years it turned out that things really had changed and for whatever reason the problem was brought under control. And this on the basis that even if one did not know what to do one was rather more likely to have a sensible idea having got to know the person and having studied the illness in detail than a therapist just out of college with no idea of anything much.

How do you learn about an illness if you never follow patients up over a long period? How do you ever discover that what they prefer is honesty?

 

[Barry53]

... PACE which he knows every detail about and still thinks is the best evidence available.

It amazes me, that "intelligent" people think this is something worth claiming. "The best evidence available" is a completely meaningless claim, and for PACE is an indictment not an endorsement. If all other evidence is incredibly weak, then the "best evidence" can still be ridiculously weak, down in the noise, effectively confirming how weak a claim is.

... how it is better to have something to recommend rather than admitting you do not know what is best...

This has bugged me for years, and I rather think doctors haven't cottoned onto the fact that patients are more savvy to their ways than in days of yore. I do understand there is a doctor/patient confidence issue a doctor may sometimes have to consider, but that is a million miles away from a formulaic approach that unconditionally presumes to effectively con a patient and pretend knowledge/expertise that is non-existent. I appreciate a doctor has no choice but to play God sometimes, and make critical decisions on behalf of their patients, but it is a choice they should never abuse, and they should always be aware of and understand that. Anything else is morally bankrupt as I see it.

 

[A.B.]

How do you learn about an illness if you never follow patients up over a long period? How do you ever discover that what they prefer is honesty?

On a purely intellectual level honesty is clearly better because only by acknowleding reality can we move forward. Unfortunately it seems that on an emotional level patients and doctors both tend to find the reality of ME/CFS and similar illnesses unbearable and place their faith into treatments that do not make any sense. That's CBT/GET for some and coffee enemas for others.

Paradoxically, a good reason the situation is hopeless is because the ongoing attitude of denial or wishful thinking prevents basic things such as doctor education, epidemiology, timely diagnoses, sensible advice, awareness of the illness within society from being made available. Even with no treatment whatsoever things could be a lot better. And there are probably a number of abnormalities in the illness that are easy and inexpensive to treat. And patients could be much more hopeful if there was a clear committment to research with the goal of actually solving the problem.

 

[Snowdrop]

I'm reading a lot of confusion.

I think it's all about the money (or mostly -- followed by I've got your back even if it costs me my integrity).

 

[user9876]

I think it was probably the last.
I was struck by the naivety of it really. The alternatives seemed to be to send the patient to a therapist or to send them off home to try to cope in the knowledge that the doctor did not really know what was best.

I wonder if he really has read enough to understand the details of the CBT being used. This is not simply about giving the patient a therapist but it is about telling a patient that they could be cured if they change their beliefs about the illness. Thus in doing so and following PACE a doctor is misleading their patients about the likely success. Also by telling patients to push the therapists run the risk of harming patients who may relapse with additional exertion.

I can see that someone could thing oh its not too bad there is nothing we can do so why not help someone cope by getting them to talk to a therapist and hence covering for bad research. But when considering what the therapy entails and the potential harm this position then moves from one of 'well lets do something' to one of potentially doing harm.

 

[NelliePledge]

The Wessely school are determined to convince that CBT and GET will cure us.........even if it kills us.

lets face it the psychs dont have a good history - saw a documentary on TV the other day about the appalling treatment they meeted out to gay men in the 1950s and 60s to "cure" them

 

[HowToEscape?]

The Wessely school are determined to convince that CBT and GET will cure us.........even if it kills us.

That would rid the patient of their disease, would it not?

 

[Forbin]

"If you substitute ‘CFS’ for ‘autism’ and ‘PACE trial’ for ‘vaccination’ you see a familiar pattern…”

What if you substitute "peptic ulcer" for "CFS" and "psychoanalysis" for "PACE trial"? Does that seem like a familiar pattern, too?

 

[Snow Leopard]

In the old days there was a third option - which present day NHS physicians may never have come across. You told the patient you did not know what was best but suggested seeing how things went with some suggestions discussed but not prescribed, THEN you saw them again and listened again to see if anything new suggested a change of plan or more tests and discussed some more things and repeated the process and THEN went on doing the same thing on a regular basis for 20 years; and with luck after 5 years it turned out that things really had changed and for whatever reason the problem was brought under control. And this on the basis that even if one did not know what to do one was rather more likely to have a sensible idea having got to know the person and having studied the illness in detail than a therapist just out of college with no idea of anything much.

Nowadays the option seems to be to write a scholarly article that is a disguised complaint about the "overutilisation" of NHS resources by MUS patients. Explicitly discussing how much money we could save if only they stopped turning up and telling doctors that their needs aren't being met and they want more tests or treatments.

 

[Jonathan Edwards]

I wonder if he really has read enough to understand the details of the CBT being used. This is not simply about giving the patient a therapist but it is about telling a patient that they could be cured if they change their beliefs about the illness. Thus in doing so and following PACE a doctor is misleading their patients about the likely success. Also by telling patients to push the therapists run the risk of harming patients who may relapse with additional exertion.

I can see that someone could thing oh its not too bad there is nothing we can do so why not help someone cope by getting them to talk to a therapist and hence covering for bad research. But when considering what the therapy entails and the potential harm this position then moves from one of 'well lets do something' to one of potentially doing harm.

My impression is that he treats people with ME so is very aware of what is going on.

 

[Barry53]

This is not simply about giving the patient a therapist but it is about telling a patient that they could be cured if they change their beliefs about the illness.

A.k.a. brainwashing.

 

[Barry53]

That would rid the patient of their disease, would it not?

Indeed. Purging someone's medical condition is not of itself difficult; the problem is doing it without killing or seriously harming the patient!

 

[Lou Corsius]

Just seconds ago, Jim Faas posted this tweet. Jim Faas is Insurance physician and lawyer. He is a column writer in Medisch Contact, the Dutch professional Magazine for physicians. He is rather influencial since he was president of the association of Insurance physicians and he is medical advisor to the board of directors of UWV, the Dutch institute for social security.

https://twitter.com/i/web/status/893014075642347524