David Tuller - Trial By Error: A Post About Andrew Lloyd

[Hutan]

in a way that shows that he understands exactly what the pitfalls are in a method

In most cases it is clunking through tired old ideas without understanding them. In a few cases like Lloyd you can tell that he sees right through the muddle

My memory of the address that Lloyd gave to the ME/CFS group is that he seemed to be not understanding the pitfalls of a method and was, at the very least, allowing the whole machinery he has built around him to keep clunking through tired old ideas.

He was not doing any long term followup of patients in his clinic. Instead there was just a questionnaire at the end of the 12 week program, with all of the problems that that involves (e.g. not wanting to displease the clinicians; self-delusion that the effort made has helped; gratitude at being understood and meeting others with the same illness).

The patients that were wheeled out to say how wonderful the clinics were clearly could not point to any real effect of the treatments other than that coming from learning how to pace, how to live within their limitations - something that most of us figure out sooner or later anyway. And these patients presumably were the clinic's success stories.

I would have thought that a person of real intellect would have challenged his own thinking more.

 

[dave30th]

Ok, can we calm down here? On a positive note, I'm now on a flight from Melbourne to Adelaide--who knew Qantas has free wifi? What a cool surprise! Anyway, I'm used to criticism so it's not a big deal for me, and I've been called much worse than "asshole." I listen when people criticize me and think about whether I can do it better next time, so I appreciate Bill's concerns and think I have tried to explain my position in a reasonable way. Bill disagrees with my reasoning. I agreed I could have presented the point in a different way but I wrote that "I guess one could call it an ad hominem attack." That's not really agreeing that it's an ad hominem attack--it's saying I can see from your perspective why you might perceive it that way. I disagree that I engaged in "character assassination" or "hurling insults." (I also don't really see much difference between "don't act like an asshole" and "you're an asshole," and replacing "hole" with "hat" doesn't make a difference.)

I explained why I felt his arrogance was relevant. This arrogance, which includes referring to himself as a "leading light" and "science-splaining" to me, goes to the heart of the problem that Jonathan describes--he has backed bad science and now won't cop to it. Instead, he pretends he can't remember whether he even cited PACE. That statement is a real insult--to me and especially to the patient community--because it is so obviously ridiculous. I gave him a mixed review and wrote positive as well as negative things. Lloyd made it very clear to me that he was unphased by criticism outside the scientific literature and that he wouldn't respond to any criticism outside that realm. He knew when I contacted him that I was likely to criticize him and spoke to me anyway. Again, I think my description of our conversation was a fair rendition. He did not respond to my last e-mail seeking more information. I have more to write about it that I will not go into here. So I hope we can table this discussion without further rancor.

 

[Sasha]

I can understand @Bill's reaction to, and concerns about, the critical description of Dr Lloyd's demeanour. I can also understand the point of view of people who think it fair game.

I must admit that the material surprised me somewhat, and it didn't sit comfortably with me because it seemed to be setting Dr Lloyd up for an unfavourable reading (though I don't think that was @dave30th's intention), without presenting any of his arguments, and it didn't feel appropriate to be commenting unfavourably on his character before he'd had a chance to speak.

But David is a journalist, and he's reporting on a scientist who is taking a hard-to-justify view in a huge controversy in which you'd expect him to be on the other side. As a reader, I would like to know if anything in Dr Lloyd's behaviour or attitude indicates why this is so. Because if we can understand him and others like him, perhaps it will help us to deal with the extremely serious problem that they present.

So I'm interested in Dr Lloyd's character, I'm used to seeing journalists in interviews include their observations of their subjects' behaviour, and I welcome this information about Dr Lloyd but I'd rather have seen it either after the interview (which is still to appear) or blended in with it. I think that would have made it more clearly appear as reportage rather than an ad hominem attack.

But I realise that there's a lot of material that you have to present, @dave30th, and that these are judgement calls.

So thanks again for the terrific work that you're doing in Australia - and thanks to @Bill for raising what seemed to me a fair concern and one worth talking about.

 

[Sasha]

So I hope we can table this discussion without further rancor.

We crossed.

I also hope we can table this discussion without further rancour! We're (almost) all patients here, and we can surely discuss things without insulting and goading each other.

 

[TiredSam]

You are confused with the differences between statements like "don't act like an ass-hat" and "you are an ass-hat?"

I feel this is a dishonest mischaracterization of my confusion. What you actually wrote was:

Being an ME advocate is not an excuse to behave like an ass-hat.

This was written after you had complained about David Tuller stooping to make ad hominem attacks, not sticking to the science, insulting, and compounding the insult, and before you stated that you felt embarrassed-by-association.

I therefore assumed that you were saying that you considered David Tuller, the ME advocate you were complaining about, to have behaved like an ass-hat.

If I am confused, and your statement about behaving like an ass-hat referred to someone else not mentioned in your post about David Tuller, I apologize unreservedly.

 

[TiredSam]

I wrote my above post before reading to the end of the thread. I shall table this discussion without further rancour.

EDIT: The above statement is not an admission of having been rancorous.

 

[Jonathan Edwards]

I would have thought that a person of real intellect would have challenged his own thinking more.

I agree, this is the puzzle. Maybe all of us apportion our intellectual powers unevenly. But sometimes it is surprising.

 

[Trish]

He was not doing any long term followup of patients in his clinic. Instead there was just a questionnaire at the end of the 12 week program,

I agree, this is the puzzle. Maybe all of us apportion our intellectual powers unevenly. But sometimes it is surprising.

I think @Hutan's post goes a long way to explaining why Prof. Lloyd supports GET - he is not looking at the long term consequences, only at the early stage where patients are learning to slow down and pace themselves carefully.

I think that's how people like Crawley convince themselves they are doing good. They all start by slowing patients down and getting them monitoring their activity with diaries and/or pedometers which is basically pacing, and helpful. This makes the patients believe that the treatment program really is good, along with the personal support they get.

Then they introduce these now fully compliant and convinced patients to directive CBT/GET approach of incremental increases in activity. By the time they sign them off and/or get them to fill in feedback forms, they will probably not have even reached their pre-treatment level of activity, so will be feeling the beneficial effect of pacing meaning fewer episodes of PEM/crashes.

They are told to go on increasing activity, and that's when the trouble kicks in, as well described by the patient who filled in David Tuller's questionnaire. Increasing activity, in however small increments, will inevitably eventually hit that patient's ceiling, and if they go on pushing through as they are told to do, they end up a whole lot worse off, not only sicker, but blaming themselves for somehow doing it wrong. But by then Prof Lloyd's clinic has got their positive feedback and signed them off as recovered and moved on to the next batch of victims.

 

[Lidia]

I had never heard of Andrew Lloyd. I didn’t find the article unsympathetic in the slightest.

 

[Barry]

He [Andrew Lloyd] dismisses the deconditioning hypothesis and appears to believe patients have a physiological disorder linked to aberrant neurological responses in the central nervous system. He hypothesizes that this phenomenon could be causing a form of hyper-sensitivity to stimuli. He thinks that a biomarker related to microglial activity in the brain could eventually be found but that investigations of blood in other parts of the body will ultimately prove fruitless.

Given you believe Andrew Lloyd is a very good scientist, and noting he has a significantly different opinion to the PACE authors of what underlies ME, I would be really interested to hear your take on the above @Jonathan Edwards.

This is a genuine question please note, not oblique sarcasm in any way.

 

[dave30th]

He cites the theory of "central sensitization," as do his recent papers. He acknowledges that this concept is a hypothesis. The purported mechanism through which GET is presumed to work is that it "desensitizes" people to exertion by gradually increasing it.

 

[Trish]

The purported mechanism through which GET is presumed to work is that it "desensitizes" people to exertion by gradually increasing it.

Sounds as logical as desensitising diabetics to sugar by gradually increasing sugar intake...

 

[lansbergen]

Sounds as logical as desensitising diabetics to sugar by gradually increasing sugar intake...

 

[Barry]

He cites the theory of "central sensitization," as do his recent papers. He acknowledges that this concept is a hypothesis. The purported mechanism through which GET is presumed to work is that it "desensitizes" people to exertion by gradually increasing it.

Hmmm ... maybe I could try that with alcohol. Might work up to a point maybe ... but ...

 

[Sly Saint]

He cites the theory of "central sensitization," as do his recent papers. He acknowledges that this concept is a hypothesis. The purported mechanism through which GET is presumed to work is that it "desensitizes" people to exertion by gradually increasing it.

This is the Mayo clinics approach also
"Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen."

https://www.mayoclinic.org/diseases...gue-syndrome/diagnosis-treatment/drc-20360510

 

[Sly Saint]

I had never heard of Andrew Lloyd

I thought he wrote some good musicals...........

 

[Cheshire]

This is the Mayo clinics approach also
"Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen."

https://www.mayoclinic.org/diseases...gue-syndrome/diagnosis-treatment/drc-20360510

Except that in shots to gradually reduce an allergy to nuts, the syringe is not full of nuts... So another groundless analogy which fells flat.

 

[chrisb]

One suspects that the term "hypersenstivity" may have a number of uses and may not be used consistently.

 

[Bill]

Ok, can we calm down here? On a positive note, I'm now on a flight from Melbourne to Adelaide--who knew Qantas has free wifi? What a cool surprise! Anyway, I'm used to criticism so it's not a big deal for me, and I've been called much worse than "asshole." I listen when people criticize me and think about whether I can do it better next time, so I appreciate Bill's concerns and think I have tried to explain my position in a reasonable way. Bill disagrees with my reasoning. I agreed I could have presented the point in a different way but I wrote that "I guess one could call it an ad hominem attack." That's not really agreeing that it's an ad hominem attack--it's saying I can see from your perspective why you might perceive it that way. I disagree that I engaged in "character assassination" or "hurling insults." (I also don't really see much difference between "don't act like an asshole" and "you're an asshole," and replacing "hole" with "hat" doesn't make a difference.)

I explained why I felt his arrogance was relevant. This arrogance, which includes referring to himself as a "leading light" and "science-splaining" to me, goes to the heart of the problem that Jonathan describes--he has backed bad science and now won't cop to it. Instead, he pretends he can't remember whether he even cited PACE. That statement is a real insult--to me and especially to the patient community--because it is so obviously ridiculous. I gave him a mixed review and wrote positive as well as negative things. Lloyd made it very clear to me that he was unphased by criticism outside the scientific literature and that he wouldn't respond to any criticism outside that realm. He knew when I contacted him that I was likely to criticize him and spoke to me anyway. Again, I think my description of our conversation was a fair rendition. He did not respond to my last e-mail seeking more information. I have more to write about it that I will not go into here. So I hope we can table this discussion without further rancor.

David, before exiting the conversation let me say I appreciate your work in exposing the scientific deficiencies of PACE, GET/CBT and the BPS approach generally. It is rubbish science that deserves to be knocked down and I'm appreciative that we who are ill have allies such as yourself who have the energy to take on the job.

I didn't intend to be guilty of making the same sort of personal remarks that I criticised. I am sorry if in any way you felt personal insult as a result of what I wrote. It was not my intention and I hope we can move forward without feelings of ill will. My objections to the blog post remain.

I wish you a safe and fruitful journey.

And GO BEARS!!!

Bill

 

[Jonathan Edwards]

Given you believe Andrew Lloyd is a very good scientist, and noting he has a significantly different opinion to the PACE authors of what underlies ME, I would be really interested to hear your take on the above @Jonathan Edwards.

I agree with the others. Lloyd is using a central sensitisation approach. There are animal experiments that might give some credence to that but I am not over enamoured of animal experiments. The real problem, as everyone is pointing out is that desensitisation with stimulus seems to be totally ungrounded in this context. I have not heard that the rats get better if you keep giving them even more electric shocks. I think the human hypothesis relates to the sort of work that was done in Richard Edwards's department and I don't think it adds up. I am putting all this in my notebook. One day I will let you know what is going to happen to the notebook but not just yet.

Edit: so to clarify there is the central sensitisation theory and there is the desensitisation theory based on elite training muscle physiology and I don't see any convincing link between the two.