Michael Sharpe skewered by @JohntheJack on Twitter

[Indigophoton]

Does he think patients like to spend days in bed?

The trouble is....I think he does. We are .....well I'm speechless. How can he think that?
These tweets are proving very illuminating.

I think he really genuinely does still think ME is just a belief and its consequences.

But it doesn't follow that the conclusion then is that subjective reports are more reliable than objective measures: if ME were a belief that CBT and GET could modify in the direction of improved health, then actigraphs would show exactly that - the improved, right-thinking patients would behave more normally, ie, do more.

The tweet really seems to suggest that he doesn't understand what an objective measure is/how it works.

 

[Jonathan Edwards]

This seems really confused. It's not clear that he understands what objective means.

Strictly speaking he is right. Activity is not an objective measure of some underlying change in an illness presumed to underly its symptoms and signs. That must be true if you can persuade ill people to be more active, which is the whole point of GET and CBT for ME. (i.e. the presumption is that you can bias activity)

But CBT for ME consists of explaining to people that there is no such underlying change. In which case all you are looking for is the increase in activity that the therapist explains is being limited by false beliefs. If there is no increase in activity at least we can say that the content of the CBT is untrue - it isn't that activity is just limited by beliefs that can be changed by CBT.

So that takes away any credibility of the idea that CBT has s specific effect relating to what is explained to the patient. It seems much more likely that what it does has nothing to do with its content - just the therapist-patient relationship. So aromatherapy would probably be as good.

Sharpe cannot claim that PACE is not about testing a theory because the treatment is supposed to work because it explains a 'correct theory' of illness to the patient. If it does not do that goodness knows what the results mean.

 

[TiredSam]

Presumably, you also choose how ill to be.

I think that is exactly what he means. ME patients are really able to do as much or as little as they choose, because their illness is just an illusion. And even if CBT relieves them of that illusion, it doesn't mean the patients will be more active, because the buggers just do what they want anyway. We all know what these people are like, right?

 

[Alvin]

Strictly speaking he is right. Activity is not an objective measure of some underlying change in an illness presumed to underly its symptoms and signs. That must be true if you can persuade ill people to be more active, which is the whole point of GET and CBT for ME. (i.e. the presumption is that you can bias activity)

But CBT for ME consists of explaining to people that there is no such underlying change. In which case all you are looking for is the increase in activity that the therapist explains is being limited by false beliefs. If there is no increase in activity at least we can say that the content of the CBT is untrue - it isn't that activity is just limited by beliefs that can be changed by CBT.

So that takes away any credibility of the idea that CBT has s specific effect relating to what is explained to the patient. It seems much more likely that what it does has nothing to do with its content - just the therapist-patient relationship. So aromatherapy would probably be as good.

Sharpe cannot claim that PACE is not about testing a theory because the treatment is supposed to work because it explains a 'correct theory' of illness to the patient. If it does not do that goodness knows what the results mean.

I think my head is going to explode
Since the real goal was to get people back to work and activity was a proxy for ability to work hence measuring it would indicate their recovery from this "terrible mindset" though i think they are/had to rewrite history in order to cover for reality punching them in the gut.
However if this is all a philosophical construct "by design" then we might as well replace Schrodinger's cat with ME/CFS patients, which one could argue is what they actually did by claiming people were disabled and cured at the same time

Finally if improvement is meant to be subjective then convincing people they are werewolves could be a valid endpoint for such a trial by his logic, a stupid endeavour but if convincing people of lies is the goal why not pick something more definable.

In the end i think he is trying to run us in circles till we collapse, divide and conquer as it were.

I am sleep deprived so my apologies if i am making no sense.

 

[Allele]

we might as well replace Schrodinger's cat with ME/CFS patients, which one could argue is what they actually did by claiming people were disabled and cured at the same time

I feel the title of the next ME/CFS history book coming on....

 

[Alvin]

I feel the title of the next ME/CFS history book coming on....

Indeed, sometimes being overtired makes me think more creatively (if garbled)
Also if a great writer wants to steal that line they is most welcome to it

 

[Daisymay]

'But it is not objective - you choose how active to be.''

And people chose how far to walk in the 6 minute walking test and how many steps to take in the step test so they're not objective? So why did he use those results?

 

[Barry]

Strictly speaking he is right. Activity is not an objective measure of some underlying change in an illness presumed to underly its symptoms and signs. That must be true if you can persuade ill people to be more active, which is the whole point of GET and CBT for ME. (i.e. the presumption is that you can bias activity)

So in trying to get my head around this: I suppose it could be that someone with cancer might, for a while at least, be motivated to do more activity even if their underlying illness were not improving. So the change in activity would not in that case be an objective indication of underlying illness change.

It is so tricky, when the underlying illness really is about activity capability.

 

[Alvin]

I think we are falling into the same trap as mainstream media. They built a house of cards, in order to keep it from collapsing they are using any explanation they can come up with to either confuse us, keep us perpetually spinning our wheels or explain it away with concepts we can't refute. If argument A is unsuccessful there is argument B, C, D or as many as are required to keep the house of cards intact.
If we seriously consider everything they claim then they hope to come up with something that sticks, if we refuse to entertain their explanations then we are being unscientific or dismissing them (which is a basis to call us unscientific).

 

[Samuel]

if possible without the need to treat with drugs."

...

at the Ciba conference

interesting juxtaposition.

 

[Hoopoe]

I think we are falling into the same trap as mainstream media. They built a house of cards, in order to keep it from collapsing they are using any explanation they can come up with to either confuse us, keep us perpetually spinning our wheels or explain it away with concepts we can't refute.

Yes. Some patients on Twitter seem to be buying Sharpe's excuses. He is not giving any real answers to the bigger problems and just looking for ways to assume the "misunderstood reasonable researcher" role.

 

[Daisybell]

But - if we ‘choose how active to be’ - then surely the actometer results should mirror the CBT and GET results, given that those two treatments are specifically designed to help us ‘understand’ that we can be more active.....
So - by the rationale for PACE, it makes no sense to remove the actometer measures. They should have provided a nice back-up for the fatigue scales!

 

[large donner]

He doesn't trust the patients to walk to their full potential he just trusts them to say they could.

 

[Indigophoton]

Activity is not an objective measure of some underlying change in an illness presumed to underly its symptoms and signs. That must be true if you can persuade ill people to be more active, which is the whole point of GET and CBT for ME. (i.e. the presumption is that you can bias activity)

Yes, OK, agreed, something that is being actively influenced by the experimenter is not an objective measure/property of the thing being tested. (Hard to measure anything without coupling it to the environment, and thus interacting with/affecting it though, strictly speaking )

I'm pretty sure that's not the sense in which Sharpe means it though - he's already said that there is nothing that can be objectively measured in ME not because of the limitations caused by influence, but because there is nothing to ME but an idea. So I think his dismissal of actigraphs as objective stems from that perspective.

 

[Lucibee]

Do I win?

 

[Barry]

Strictly speaking he is right. Activity is not an objective measure of some underlying change in an illness presumed to underly its symptoms and signs. That must be true if you can persuade ill people to be more active, which is the whole point of GET and CBT for ME. (i.e. the presumption is that you can bias activity)

Interesting that if you were to apply this strategy to people with a long term persistent activity limiting illness, the odds are you might find minor improvements in the motivationally driven activity for a while, that would likely fade as the motivational effect hits its low ceiling, and reality once again kicks in as the physical activity limitation reasserts its dominance once more. Which feels familiar ground to me.

 

[Indigophoton]

 

[Barry]

But it is not objective - you choose how active to be.

This ignores the blindingly obvious. We all can choose how active to be within our individual physical limitations. If somebody has a severe heart condition, they cannot simply choose any activity level. Someone stupid might look at them and say, "Go on, get on with digging that allotment, it's your choice how much activity you can do."

It is yet another playing with words, sleight of mind; like some obsessive compulsion. Partial truths seemingly designed so listeners will inevitably infer an untruth. Yes we all have choice in our level of activity - the implied untruth being that PwME have complete control over their level of activity. The truth for everyone is that their level of activity will at any one point always have a physical upper bound, and their choice of activity will be bounded by that. PwME, with a severely restricted upper limit on their activity level, will be bounded by that, as PACE so very clearly showed.

Partial truth; implied untruth. Such a novelty with these folk - not!

 

[large donner]

Could England win the world cup playing in Russia in the summer by improving their performances using GET and CBT. No because they might not try, you choose how well play to play!

But, they could win the world cup by undergoing CBT and GET not going to the world cup and then at the end of the course being asked, did you win the world cup?

 

[Estherbot]

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