Special Report - Online activists are silencing us, scientists say Reuters March 2019

TiredSam said:
What a bland article written in a well-meaning but clueless tone.
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Exactly. He 'worries' about Sharpe's 'harassment' but actually never mentions the treatments Sharpe advocates as recommendations. He confusingly says that there is evidence for pacing which I'm sure Sharpe would dispute! It's a completely on the fence piece which comes across as written by someone who either doesn't know much about the condition (and therefore shouldn't be opining on it) or isn't willing to reveal their own allegiances.

There is no mention of testing for conditions like POTS/OI etc which a GP could actually try to treat and provide some relief for. He ultimately says that a diagnosis of ME (like you quote) is not helpful because no help can be offered which is utter nonsense. In what situation is telling someone what their illness is not helpful? People get given terminal diagnoses and I cannot imagine what that feels like but a doctor wouldn't stray away from it because there is nothing more they can do.

This is rambling and I'm not making my point very well but this is a complete non-article.
 
SallyC said:
Exactly. He 'worries' about Sharpe's 'harassment' but actually never mentions the treatments Sharpe advocates as recommendations. He confusingly says that there is evidence for pacing which I'm sure Sharpe would dispute! It's a completely on the fence piece which comes across as written by someone who either doesn't know much about the condition (and therefore shouldn't be opining on it) or isn't willing to reveal their own allegiances.

There is no mention of testing for conditions like POTS/OI etc which a GP could actually try to treat and provide some relief for. He ultimately says that a diagnosis of ME (like you quote) is not helpful because no help can be offered which is utter nonsense. In what situation is telling someone what their illness is not helpful? People get given terminal diagnoses and I cannot imagine what that feels like but a doctor wouldn't stray away from it because there is nothing more they can do.

This is rambling and I'm not making my point very well but this is a complete non-article.
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Sadly not a non article for those with no knowledge of the condition.
 
Skycloud said:
How are all these people so unaware, so satisfied with pontificating about subjects on which they can't even be bothered to find out more. And it's not about them and their thick skins or lack of them! Nobody, not one journalist has bothered to talk to anyone except Sharpe and people on his safe list.
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One wonders where George Monbiot and Frances Ryan are, or why they may decide to steer clear.
 
Depressing that it was due to the distortion and disruption of scientific research by a particular zealous cohort of intolerant, trolling campaigners (no doubt some of whom I am about to encounter)
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Poor Claire Fox, hoping in vain to be trolled so she can join Michael Sharpe's small gang of victims. I'm trying to imagine a sadder ambition in life, but I can't.

All it should take is one UK mainstream journalist to realise that Michael Sharpe's narrative is completely implausible. People don't leave their jobs because of trolls, they leave twitter. Stephen Fry didn't announce that he was leaving the entertainment business because of twitter, he announced that he was leaving twitter because it was crap and full of trolls. It will just take one journalist to say "MS can I see some evidence from that file on your computer", followed by "You have got to be kidding me - you call that harrassment?" and a long article about devious psychs making up social media trolling stories as a smokescreen when their appalling attempts at science are uncovered.
 
TiredSam said:
Poor Claire Fox, hoping in vain to be trolled so she can join Michael Sharpe's small gang of victims. I'm trying to imagine a sadder ambition in life, but I can't.

All it should take is one UK mainstream journalist to realise that Michael Sharpe's narrative is completely implausible. People don't leave their jobs because of trolls, they leave twitter. Stephen Fry didn't announce that he was leaving the entertainment business because of twitter, he announced that he was leaving twitter because it was crap and full of trolls. It will just take one journalist to say "MS can I see some evidence from that file on your computer", followed by "You have got to be kidding me - you call that harrassment?" and a long article about devious psychs making up social media trolling stories as a smokescreen when their appalling attempts at science are uncovered.
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Specially when he, in reality, has already left the field a few years ago, but just wants to be more dramatic by claiming he's leaving because of twitter harassment.
 
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Skycloud said:
Frances Ryan is expressing interest on Twitter
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chrisb said:
Presumably they are dependent upon their editors.
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Yes, I have emailed both of them.
George Monbiot has never seemed dependent on an editor when it comes to exposing bad practice.

I fear that it is all too easy for everyone to think:

They say people with ME are nuts, maybe they are.
It figures that they are angry and abusive because people are saying they are nuts.
So let's leave it.

The longer that the advocacy narrative is that Sharpe is wrong because ME is 'biological rather than mental' the longer this mindset will continue and Sharpe will get away with his only argument.

But it is interesting to look at it the other way around. It seems that tiny David T with a stone and a sling at Virology Blog is now totally outnumbered by all these media Goliaths. Yet this collection of Goliaths is only there to shout down David, and somehow they seem to need to go on and on shouting - because David is still there and shows no signs of being disarmed.
 
Skycloud said:
@Jonathan Edwards Should have added that according to Frances Ryan on Twitter the Guardian will be producing a piece soon
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And that is pretty worrying because if anyone at the Guardian is ever going to produce a piece that is any use they need to speak to someone like me. As Vincent Racaniello said to Kelland, she was not going to do an informed piece without contacting me.
 
ladycatlover said:
I may well be confused, but isn't this the sister that Fiona said had ME?
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We debated this before and I think there turned out to be two Claires, but this might still be the 'ME' one.

I cannot see how on earth anyone could call that interview brilliant. My wife pointed out that MK made it very clear that she had no interest and could not be bothered to raise the interview to a reasonable intellectual level - presumably because she was doing it because she had been told to.

The SMC line seems to be just keep shouting how wonderful your friends are and they will do the same.
 
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Jonathan Edwards said:
And that is pretty worrying because if anyone at the Guardian is ever going to produce a piece that is any use they need to speak to someone like me. As Vincent Racaniello said to Kelland, she was not going to do an informed piece without contacting me.
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I agree and think a piece produced 'soon' will likely rely heavily on Kelland's reuter's piece.
 
Jonathan Edwards said:
And that is pretty worrying because if anyone at the Guardian is ever going to produce a piece that is any use they need to speak to someone like me. As Vincent Racaniello said to Kelland, she was not going to do an informed piece without contacting me.
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Could some people who are on Twitter point out why it would be pretty ignorant for journalists working on ME to omit Jonathan Edwards' view on ME research? (Edit: And use polite wording if they do?)

Jonathan Edwards said:
Reuters contacted a dozen professors, doctors and researchers with experience of analyzing or testing potential treatments for chronic fatigue syndrome.[...]
Ms Kelland was specifically advised to contact me, as someone with expertise in the field, plus the useful, and rather unusual, quality of having no vested interest in any particular approach.

I had 'analysed potential treatments' in a paper in J Health Psychology.
I had analysed the analysis in a Cochrane review as a referee.
I was the only UK scientist to be recently asked to take part in an advisory board for the MRC on strategy in the context of inviting ME research proposals.
More generally I had been asked to advise, from an independent standpoint, in various ways, NIH, MRC, Wellcome, three ME charities, Cochrane, the UKME Biobank, etc. about the quality of ME research.

But it seems an independent view on research was not part of the agenda.
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https://www.s4me.info/threads/speci...ay-reuters-march-2019.8557/page-7#post-150530
 
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Jonathan Edwards said:
Yet Ryan's tweet sounded sympathetic to PWME.
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I'm assuming that a 'soon' piece may not be one produced by Ryan, but I could very well be wrong. I think anything by Ryan would be sympathetic and hopefully accurate, though she would need to speak to people Kelland avoided, such as yourself, to do the subject justice.

(I'm guessing at this of course, and probably haven't ordered my thoughts well in my comments.)
 
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