Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues

[worldbackwards]

How I've missed these!

http://www.virology.ws/2016/01/04/t...estions-for-dr-white-and-his-pace-colleagues/

I had noticed the kinds of non-responsive responses Dr. White and his colleagues provided in journal correspondence and other venues whenever patients made cogent and incontrovertible points. They appeared to excel at avoiding hard questions, ignoring inconvenient facts, and misstating key details. I was surprised and perplexed that smart journal editors, public health officials, reporters and others accepted their replies without pointing out glaring methodological problems

More from Big Dave. One of the things I really hate about White's responses to anyone is how he obfuscates over minor questions and avoids the big ones altogether, so this is a great topic.

 

[Gijs]

very, very good and legitimate questions.

 

[Marco]

Don't you feel he's being a little too 'nitpicking'?

 

[Jonathan Edwards]

 

[jimells]

I have just one question for the HMS PACE crew:

How long can you tread water?

 

[Sean]

One of the things I really hate about White's responses to anyone is how he obfuscates over minor questions and avoids the big ones altogether, so this is a great topic.

It is really important that not only is their 'science' technically refuted, but also that their highly manipulative and deceitful propagandistic approach is fully exposed.

This one really does go way past just some minor spat in a remote corner of science, and all the way to the core of power in this modern world.

 

[Sean]

This one really does go way past just some minor spat in a remote corner of science, and all the way to the core of power in this modern world.

Including to the critical and urgent question of how much formal power and influence should psychiatry be granted, given the typically poor quality science upon which their claim to authority is based.

 

[Tom Kindlon]

Comment I posted underneath:

On question 17, they actually once published a "clarification" in the Lancet on a fairly minor point (see: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60267-0/fulltext ). This shows they know the possibility is there to correct the record.

17) In your response to correspondence in the Lancet, you acknowledged a mistake in describing the Bowling sample as a “working age” rather than “adult” population–a mistake that changes the interpretation of the findings. Comparing the PACE participants to a sicker group but mislabeling it a healthier one makes the PACE results look better than they were; the percentage of participants scoring “within normal range” would clearly have been even lower had they actually been compared to the real “working age” population rather than the larger and more debilitated “adult” population. Yet the Lancet paper itself has not been corrected, so current readers are provided with misinformation about the measurement and interpretation of one of the study’s two primary outcomes.

Why hasn’t the paper been corrected? Do you believe that everyone who reads the paper also reads the correspondence, making it unnecessary to correct the paper itself? Or do you think the mistake is insignificant and so does not warrant a correction in the paper itself? Lancet policy calls for corrections–not mentions in correspondence–for mistakes that affect interpretation or replicability. Do you disagree that this mistake affects interpretation or replicability?

 

[sarah darwins]

Including to the critical and urgent question of how much formal power and influence should psychiatry be granted, given the typically poor quality science upon which their claim to authority is based.

I think that should be "psychiatry and psychology", especially in the UK. It feels like the two disciplines are mounting a backdoor coup in frontline healthcare here.

It occurs to me that Danny Boyle left something out of his big NHS set piece in the opening ceremony of the London Olympics. There should have been a chorus line of psychologists administering CBT to dancing MUS patients.

 

[worldbackwards]

It occurs to me that Danny Boyle left something out of his big NHS set piece in the opening ceremony of the London Olympics. There should have been a chorus line of psychologists administering CBT to dancing MUS patients.

I'm seeing a tableau representing the history of faith in Britain by combining past and present - Ken Branagh as Jesus, resurrecting Lazarus by getting him to redefine his sickness beliefs, then blaming him for being such a miserable old lazybones in the first place.

This could be the start of a whole new genre! I'm going to take a song and dance adaptation of the DSM V to Broadway and no-one can stop me!

 

[Sean]

I think that should be "psychiatry and psychology",...

Yep.

 

[snowathlete]

Very good. You could write a very long article focusing entirely on their avoidance and misrepresentation of questions. Needs more exposure in my opinion because it is easy to get away with only so long as you control the information that might be used to tackle it. Which is exactly what they are doing, they know the information if shared would trump their propaganda.

 

[Cheshire]

Which is exactly what they are doing, they know the information if shared would trump their propaganda.

Yeh, propaganda really IS the right word:

Propaganda is a form of communication, often biased or misleading in nature, aimed at influencing and altering the attitude of a population toward some cause, position or political agenda in an effort to form a consensus to a standard set of belief patterns.

Propaganda is information that is not impartial and used primarily to influence an audience and further an agenda, often by presenting facts selectively (perhaps lying by omission) to encourage a particular synthesis, or using loaded messages to produce an emotional rather than a rational response to the information presented.

https://en.wikipedia.org/wiki/Propaganda

 

[jimells]

It is really important that not only is their 'science' technically refuted, but also that their highly manipulative and deceitful propagandistic approach is fully exposed.

This one really does go way past just some minor spat in a remote corner of science, and all the way to the core of power in this modern world.

I think they read Herman and Chomsky's "Manufacturing of Consent" and decided it was an instruction manual.

 

[soti]

If you're interested in propaganda, there's a new book out by a philosopher: http://press.princeton.edu/titles/10448.html. Likely to be relevant here.

 

[anniekim]

Very good. I have one question though about Tuller's question 18. He writes 'the CDC obviously requires “fatigue,” but not that it be the primary symptom, and patients can present with post-exertional malaise or cognitive problems as being their “primary” complaint.)' I thought fatigue with the CDC criteria had to be the primary complaint? Have I misunderstood? Thank you

 

[Valentijn]

I thought fatigue with the CDC criteria had to be the primary complaint? Have I misunderstood?

It's Oxford which has to be primarily about fatigue. Fukuda requires chronic fatigue + 4 symptoms from a list of 8.

 

[anniekim]

Thanks @Valentijn I know Oxford the primary complaint is fatigue but I understood, possibly wrongly, CDC must have fatigue as primary complaint and then four other symptoms out of a list of 8, I.e if you said you had post exertional malaise and cognitive function but no fatigue you wouldn't meet the CDC criteria? Thank you

 

[Valentijn]

I.e if you said you had post exertional malaise and cognitive function but no fatigue you wouldn't meet the CDC criteria? Thank you

Not really. I think they're largely considering PEM to be a specific type of fatigue. I don't think "fatigue" is incorrect so much as it is non-specific to the point of being useless. It doesn't help select ME patients, but doesn't necessarily interfere either - unless it is required to be the most prominent symptom, a la Oxford.

The much bigger problem is the omission of PEM as a mandatory symptom.

 

[anniekim]

Ok, thank you. I of course agree the omission of PEM as a mandatory symptom is a huge problem