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

From the podcast comments section
ZoLouJ
18h ago
I was sorry you didn't mention last year's study from the University of Bristol, which showed that The Lightning Process can be a successful treatment for ME/CFS. There are effective treatments out there as evaluated by scientists, just not necessarily developed by medics or psychologists.
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I supppose someone had to bring it up
 
Sharpe posting under a false name?

That is how misled patients have been by those claiming to advocate for them as it is not legitmate at all to claim PACE was a flawed trial. What would be the point in interviewing someone who would only misrepresent the issues and make false allegations and abusive comments towards researchers? All reasonable people with ME should be condemning that kind of campaigning that has only brought sufferers into disrepute and has done nothing at all to be of genuine help to sufferers.
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(from the Guardian podcast comments section)
 
strategist said:
Sharpe posting under a false name?

That is how misled patients have been by those claiming to advocate for them as it is not legitmate at all to claim PACE was a flawed trial. What would be the point in interviewing someone who would only misrepresent the issues and make false allegations and abusive comments towards researchers? All reasonable people with ME should be condemning that kind of campaigning that has only brought sufferers into disrepute and has done nothing at all to be of genuine help to sufferers.
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(from the Guardian podcast comments section)
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Don't think so. Here's a link to their comment profile: https://profile.theguardian.com/user/id/16774495?page=1
 
strategist said:
Sharpe posting under a false name?



(from the Guardian podcast comments section)
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Not enough typos to be Sharpe but definitely someone close to them. It takes a special kind of shamelessness and conflict of interest to argue that it is the patients causing harm to patients by working to retract harmful guidelines that have no objective evidence. Not sure what those false allegations and abusive comments are supposed to be, but to leave them implied without citing anything shows this was not in good faith.
 
rvallee said:
Not enough typos to be Sharpe but definitely someone close to them. It takes a special kind of shamelessness and conflict of interest to argue that it is the patients causing harm to patients by working to retract harmful guidelines that have no objective evidence. Not sure what those false allegations and abusive comments are supposed to be, but to leave them implied without citing anything shows this was not in good faith.
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Reads more like everyone's favourite concern troll from twitter.
 
it is not legitmate at all to claim PACE was a flawed trial.
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Of course it is, just the same as it is legitimate for the PACE proponents to refute such claims with solid scientific debate, which they do not because they cannot.
What would be the point in interviewing someone who would only misrepresent the issues and make false allegations and abusive comments towards researchers? All reasonable people with ME should be condemning that kind of campaigning that has only brought sufferers into disrepute and has done nothing at all to be of genuine help to sufferers.
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Good reporting never excludes interviewing people from an opposing viewpoint for such reasons! Attempts to suppress such reporting, by whatever means, says much about those who seek to do it.

All reasonable people, with or without ME, must surely be able to see through this rubbish.
 
Was just reading a Guardian article from link posted on another thread and at the end of it (usually there is a paragraph asking people to subscribe) it now says:

"Thanks to all the readers who have supported our independent, investigative journalism through contributions, membership or subscriptions, we are overcoming the perilous financial situation we faced."

"Sustained support from our readers enables us to continue pursuing difficult stories in challenging times of political upheaval, when factual reporting has never been more critical.

The Guardian is editorially independent – our journalism is free from commercial bias and not influenced by billionaire owners, politicians or shareholders. No one edits our editor.
No one steers our opinion. This is important because it enables us to give a voice to the voiceless, challenge the powerful and hold them to account. Readers’ support means we can continue bringing The Guardian’s independent journalism to the world."

really?
 
Sly Saint said:
No one steers our opinion. This is important because it enables us to give a voice to the voiceless, challenge the powerful and hold them to account. Readers’ support means we can continue bringing The Guardian’s independent journalism to the world."
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I am afraid with the new editor any pretence of independent investigative work has gone from the Guardian.
 
Prof Sharpe has just deleted his tweet where he said ME patients are surely too ill to produce so many complaints and FOI requests. So now in the many replies, his tweet is missing. A few folks had already screenshotted it, though, such as:


And also such as Lucibee's post #77 earlier in this thread https://www.s4me.info/threads/the-g...ublic-play-in-science.6474/page-4#post-118253.

Oops, cover-up attempt not entirely successful!
 
I don’t know if it’s been mentioned but the lady dr Kimberly interviewed is tweeting that she’s trying to get a research project off the ground with trudie Chalder and Rona Morris so right in the thick of CFS researchers with a huge interest in defending PACE and behavioral treatments
 
EzzieD said:
Prof Sharpe has just deleted his tweet where he said ME patients are surely too ill to produce so many complaints and FOI requests. So now in the many replies, his tweet is missing. A few folks had already screenshotted it, though, such as:


And also such as Lucibee's post #77 earlier in this thread https://www.s4me.info/threads/the-g...ublic-play-in-science.6474/page-4#post-118253.

Oops, cover-up attempt not entirely successful!
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Hubris breeds contempt.

Contempt only works as long as the target population remains vilified.

Once people understand how severe and disabling this disease, such public displays of contempt will be ridiculously damning. They managed to control the messaging for 2 decades but reality has a way of asserting itself. Often too late, but they are going way too far with the vilification. There is just too much public record that nothing they say about us is true.

Makes me think of Trump and his campaign to create fear and discord out of a small village of refugees weeks away. Punching down is always very ugly to watch when it is laid bare.
 
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 - a la Rod Liddle. We need to be careful that we dont play into it.
The unaware will not understand that a bedbound person spending an hr a day on the internet is only able to do that because they do it in 5-10 min chunks spread throughout the day & not only is it ALL they are able to do, but likely sacrifice having a wash (for example) to do so, because it is one way of feeling less hopeless in the face of suffering & powerlessness & therefore worth the sacrifice. He knows perfectly well that many of the online protesting patients are bedbound & would like to draw attention to it if you ask me - as a way to suggest that they not as ill as they say.
But the thing is that a person equivalently ill with an organically understood condition would have no need to fight, they are well looked after &relatively speaking entirely safe within the healthcare system.... so they have the luxury of being able to spend their limited energies on more enjoyable things that arguing/fighting against the BPS BS juggernaut, because it isnt crushing them
.
 
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