Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

Let me rephrase this bit:
a significant challenge for patientscientist-led research is that it is often (understandably) underpinned by “cognitive passions”—that is, deeply-held, emotionally-charged perspectives on a condition. While such passions give energy and focus to a patientscientist-led research agenda, they may mean that patientsscientists find it difficult to approach research into their own condition with the equipoise expected in science.
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There! Makes just as much sense.

Of course there are patients strongly biased towards a favourite hypothesis. The same applies to scientists.

There are also patients who do their very best to be as unbiased as humanly possible. The same applies to scientists.

It's the latter patients and scientists we need to get to work together for best results (while the patients and scientists in the first category should be sentenced to a lengthy time-out).
 
It is strange that she seeks to distinguish ME from all other conditions without proffering any analysis, or suggesting any reason for the "negative tension". There are people who like to start a fight and walk away, leaving others to get on with it.

I suppose that word "equipoise" gives the game away. We have heard it before.
 
EzzieD said:
That's...rather insulting, as well as surprisingly ill-informed. She's seriously saying there have never been any 'negative tension generating' conflicts as regards HIV/AIDS or mental health? I seem to recall there being many back when HIV/AIDS wasn't being taken seriously, and still ongoing in the mental health sphere. Is she another of the SMC and/or PACE bunch perpetuating their invented narrative of 'ME/CFS patients vs scientists' rather than the reality of ME/CFS patients vs bad science? Can't understand why she would specifically single out ME/CFS patients as she did there, unless that was the case.
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She's mates with Wessley. Worked together at Queen Mary?? Check this awful article out https://academic.oup.com/bmb/article/69/1/197/523356
 
rvallee said:
I see no way of doing a response so I used the commenting system. Could have been better, my mind is pretty foggy today, but here goes in case it's censored:
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Update: my comment was censored.

Let's unpack this. On an article promoting a new model of increased patient engagement, misleadingly citing as example of failed patient engagement a maligned disease whose failure to achieve any progress in 3 decades rests mainly on having failed to engage with patients at all, a comment by a patient mentioning that this failure is precisely refusing to engage was censored.

Bravo. That is right up there with conferences on patient engagement where no patients are present. Which is a common thing.

I personally applaud this mobius strip of multidimensional mediocrity, it truly transcends into a perfect ideal of failure. Could not have made a better case for failure to engage with a patient community. It would make sublime satire if it weren't real and with tragic consequences.


Edit: I can actually check in Disqus the status of my comment and it says "pending" so maybe it will be approved later on. Still, 24h+. I'm pretty sure I was polite and straight enough.
 
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rvallee said:
Update: my comment was censored.

Let's unpack this. On an article promoting a new model of increased patient engagement, misleadingly citing as example of failed patient engagement a maligned disease whose failure to achieve any progress in 3 decades rests mainly on having failed to engage with patients at all, a comment by a patient mentioning that this failure is precisely refusing to engage was censored.

Bravo. That is right up there with conferences on patient engagement where no patients are present. Which is a common thing.

I personally applaud this mobius strip of multidimensional mediocrity, it truly transcends into a perfect ideal of failure. Could not have made a better case for failure to engage with a patient community. It would make sublime satire if it weren't real and with tragic consequences.


Edit: I can actually check in Disqus the status of my comment and it says "pending" so maybe it will be approved later on. Still, 24h+. I'm pretty sure I was polite and straight enough.
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Update: still "pending". No other comments have been either made or approved.

Not sure why it should take this long. Did I make people reflect on things? *gasp* Probably not...
 
Lucibee said:
Haven't we had this problem with BMJ Blogs before...?
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Rings a bell but I think it was for an "official" response, not the Disqus comments below? I saw no other way to make a comment or response so maybe it's in a different part of the platform since this was an opinion piece, not a peer-reviewed paper.
 
Lucibee said:
I've had another look - and I have a suspicion that they censor all comments on their blogs (and their FB page seems suspiciously free of comment too). Rapid responses are another thing entirely.

However, there's nothing to stop anyone linking a comment below their Twitter post...

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They are clearly not interested so I'll just let my comment on this thread stand as my contribution and leave them to their bubble and fantasies about patient-engagement-without-any-actual-patients. The one I left is a bit too long for twitter anyway.

It's still pending so I guess that's one way of not censoring while still censoring. The irony of this being an article on patient engagement is impressive.
 
I have not looked at the comments thread but Disqus can do strange things; when the Virology Blog used Disqus it would sometimes swallow longer comments and comments with links, and once it had swallowed one of your comments it then was more predisposed to treat subsequent comments by the same person as spam. This was a factor in the Virology Blog switching to a different comments facility.

I don’t usually now bother to comment on anything using Disqus, and always keep a copy if I do. It is much less likely to happen if the administrators designate you as a trusted person with Disqus, so it can be that associates of the admins ‘accidentally’ end up with privileged access to commenting.

This does not guarantee the missing comments were not deliberately blocked, but it make be worth emailing the administrators a screen shot of the ‘pending’ comments, before deciding if this is the case or not.
 
Peter Trewhitt said:
I have not looked at the comments thread but Disqus can do strange things; when the Virology Blog used Disqus it would sometimes swallow longer comments and comments with links, and once it had swallowed one of your comments it then was more predisposed to treat subsequent comments by the same person as spam. This was a factor in the Virology Blog switching to a different comments facility.

I don’t usually now bother to comment on anything using Disqus, and always keep a copy if I do. It is much less likely to happen if the administrators designate you as a trusted person with Disqus, so it can be that associates of the admins ‘accidentally’ end up with privileged access to commenting.

This does not guarantee the missing comments were not deliberately blocked, but it make be worth emailing the administrators a screen shot of the ‘pending’ comments, before deciding if this is the case or not.
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In better health I would bother but seeing as there are no other comments I think it's just that no one is assigned to it and it was kind of forgotten that this commenting system is even there. BMJ is huge and comments from the public are probably not on anyone's radar.
 
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