The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

JemPD said:
I read Sharpe's tweet about patients being too ill to do FOIs etc, as a sly way of suggesting that they cant be that ill if they're going to all this trouble
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That's what he was implying for sure, and 'sly' is the word. But he is falling into a trap of his own making, because one day all this is going to come back and be cited as evidence I think. These tweets over the months reveal so much about his mind set and his disturbing perceptions of patients, especially his profound lack of insight into what it is like to have ME, or even to be any sort of patient. I begin to wonder if others (SW etc) can see a fall coming, and might be happy for MS to be the fall guy, being as he seems to have such an aptitude for it. Maybe he is being told behind the scenes what a great job he is doing, and not to give up, while others hope the sh*t flies past them one day?! He's not someone I can feel sorry for.
 
Patients would surely be to ill to produce so many complaints and FoI requests to journals, funders and universities.
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Clearly, he doesn't understand that Work = Power * time.

That is, even with low available power, much can sometimes be achieved if the work can be carried out in small increments and/or over much more than the usual amount of time.


It's the sort of thing that would be obvious to a physicist.

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JemPD said:
they not as ill as they say
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that is what the whole benefits system revolves around; 'if they can do x,y,z,....get to a testing centre miles away, climb stairs, fill out massive forms' etc etc. But what is not taken into account is the effort involved to comply and the cost to health as a result, and of course the fact that there is no alternative.
catch-22
 
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Sly Saint said:
that is what the whole benefits system revolves around; 'if they can do x,y,z,....get to a testing centre miles away, climb stairs, fill out questionnaires' etc etc. But what is not taken into account is the effort involved to comply and the cost to health as a result, and of course the fact that there is no alternative.
catch-22
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My emphasis

Yes, one wonders what MS thinks happens to the people who need benefits in order to live, and who have a disease like Motor Neurone Disease, which is a "respectable" one that people like him (I'm guessing here) do actually believe in. Are they supposed to "do the decent thing" and just die, if they can't get to a testing centre?
 
I did write to Ian Sample, and commented that many "patients" were or even are still skilled professionals, and that I would be happy to help him understand the problems with the trial and with the Cochrane analysis. I even gave him a link to the first PACE video.

I have not yet had a reply, even an acknowledgement.
 
Graham said:
I did write to Ian Sample, and commented that many "patients" were or even are still skilled professionals, and that I would be happy to help him understand the problems with the trial and with the Cochrane analysis. I even gave him a link to the first PACE video.

I have not yet had a reply, even an acknowledgement.
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Oh dear Graham, I didn't know you were capable of such vicious harassment.
 
Lucibee said:
I've posted the essence of my letter to The Guardian's Science Weekly team on my blog: https://lucibee.wordpress.com/2018/11/07/the-guardians-science-weekly-podcast-on-2-november-2018/
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That is very good @Lucibee. I especially like:
Lucibee said:
This cannot continue. We need the help of a scientifically literate media to help explain what is going on here to the wider world. Which is why it is so disappointing that journalists at The Guardian who trained as scientists, like Ian Sample (and others), have so badly misrepresented this issue.
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Arnie Pye said:
My emphasis

Yes, one wonders what MS thinks happens to the people who need benefits in order to live, and who have a disease like Motor Neurone Disease, which is a "respectable" one that people like him (I'm guessing here) do actually believe in. Are they supposed to "do the decent thing" and just die, if they can't get to a testing centre?
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This attitude is surprisingly common and seeing Sharpe's general contempt for us, I'd say yes, absolutely. Very Malthusian, I'm sure they rationalize that it's just the right thing to do.

This is also one of the reasons why UBI will be so revolutionary. Not enough people understand how widespread being unable to work is and how it leads to abject poverty. Out of sight, out of mind. There seems to be a perception that disability is a problem we have largely taken care of. Reality is very far from this.
 
rvallee said:
This is also one of the reasons why UBI will be so revolutionary. Not enough people understand how widespread being unable to work is and how it leads to abject poverty.
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Poverty maims and kills like no other. Hard to think of any single thing that would improve overall health more than eliminating poverty. Greatest public health issue of all time.
 
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