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

fivetowns said:
This the 'pathetic ego driven games' one:



Considering it was a reply on a completely unrelated post by Wessely there's more credence to it being online abuse (it's certainly not mildly worded). But if this was (presumably) one of the worst 'attacks' on Wessely it doesn't say much for the 'relentless online trolls' narrative.
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Wessely at least has a good taste in music! Perhaps the ME community should adopt this as their new mantra?

Think (My bold)

Aretha Franklin
You better think (think)
Think about what you're trying to do to ME
Think (think, think)
Let your mind go, let yourself be free
Let's go back, let's go back
Let's go way on, way back when
I didn't even know you
You couldn't have been too much more than ten (just a child)
I ain't no psychiatrist, I ain't no doctor with degrees
But, it don't take too much high IQ's
To see what you're doing to ME
You better think (think)
Think about what you're trying to do to ME
Yeah, think (think, think)
Let your mind go, let yourself be free
Oh, freedom (freedom), freedom (freedom)
Oh, freedom, yeah, freedom
Freedom (freedom), oh oh freedom (freedom)
Freedom, oh freedom
Hey, think about it, think about it
There ain't nothing you could ask
I could answer you but I won't (I won't)
But I was gonna change, but I'm not
If you keep doing things I don't
You better think (think)
Think about what you're trying to do to ME
Think (think)
Let your mind go, let yourself be free
People walking around everyday
Playing games, taking scores
Trying to make other people lose their minds
Ah, be careful you don't lose yours, oh
Think (think)
Think about what you're trying to do to me, ooh
Think (think)
Let your mind go, let yourself be free
You need ME (need ME)
And I need you (don't you know)
Without each other there ain't nothing people can do, oh
Think about it, baby (What are you trying to do ME)
Yeah, oh baby, think about it now, yeah
(Think about, forgiveness, dream about forgiveness)
To the ball, forgiveness
Think about it baby
To the ball, forgiveness
To the ball, forgiveness
Songwriters: Aretha Franklin / Ted White
Think lyrics © Sony/ATV Music Publishing LLC, Springtime Music Inc
 
Suffolkres said:
Wessely at least has a good taste in music! Perhaps the ME community should adopt this as their new mantra?

Think (My bold)

Aretha Franklin
You better think (think)
Think about what you're trying to do to ME
Think (think, think)
Let your mind go, let yourself be free........

Now listen to this exquisite track to calm those frayed nerves......Django /?fbclid=IwAR1oCnhgkRdCyk2gdIX3FyLSQAikn3uJgk2bh6syK0LujxerzvqWeRfGO5k
A remarkble young vibraphonist in the Milt Jackson tradition. Dave Gelly (Observer)
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Miles Davis described "Django" as one of the best compositions ever, and in their book Clawing at the Limits of Cool, Salim Washington and Farah Griffin said,

"It is almost like a poem in its economy and poignancy. With remarkable restraint and almost no concessions to the extroverted tendencies of jazz, the slow and dirgelike 'Django' sustains an intensity and pathos made all the more beautiful through restraint."[7
 
Lucibee said:
I've been struggling to understand what this is all about really. If Sharpe is really "sick and tired" of all the "complaints to the GMC", is lashing out about "online trolls on Twitter" in the national and international press a proportionate response? To me it seems to be a huge abuse of power. He knows the power of the mainstream media and social media, and how that plays into readers' own stigmas and ideologies.

And if the clinic is so satisfying to Wessely, why doesn't he use that in a way that people actually want him to?

The only reason it has become about the "cap badge of the interventions and the researchers" is because they have refused to listen to what people have been telling them over the past 30 years. If their approach worked, the badge wouldn't matter. That's what's so sad.

And ultimately, it is all about the science, because they have been blind to what the science has been telling them all these years.
And that really is sad for everyone.
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Yeah, I feel the same. Wessely's tweets seemed boarderline incomprehensible on first reading.

"It's about the cap badge of the interventions and researchers." Is that why patients with peptic ulcers, MS, Parkinson's disease, Diabetes, Tuberculosis, etc. no longer congregate to psychiatry then? No, it's not. I'm not a psychiatrist myself and so one hesitates to comment, however, it appears SW might be projecting his contempt for patients with the label ME/CFS here... right?

Then Wessely tweeted "And what's really depressing is that it's certainly not about militant patients either." Why is that depressing?... :confused:

Overall this appears to be a calculated attempt to appeal to any important or useful constituency and attempt to recruit them to his cause, while placating patients, or at least confusing them.
 
hinterland said:
I don't have sight of the phase III rituximab trial data, but I thought what was remarkable about the early work was that when patient reported improvement occurred, it had a distinct pattern to it, that, to me, suggested something more than a simple placebo effect was going on in a subgroup of patients. In that the improvement wasn't immediately associated with the dose of 'medicine', it followed a delayed repsonse curve correlating with b-cell depleation, and was actually completely unexpected in the early cases where the treatment was for cancer, not ME/CFS.
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The story is complicated. The first observations were on methotrexate leading to improvement of ME. Flag and Mella then guessed that this was because methotrexate targeted B cells and tried rituximab.

In the first ME phase 2 blinded study of ritumximab there was no distinct pattern to the time course of symptom changes. This was the thing that worried me most about it. I looked carefully at all the raw data, both on my own and with the Norwegians. Trends in symptoms wandered about in no standard fashion.

Within this was the observation that at 6 months those who had the drug seemed to be significantly better than controls.This was no good as a statistically significant endpoint because it was post-hoc. However, my feeling was that 6 months should have been the primary endpoint, rather than the 3 month endpoint chosen in advance. So I encouraged the Norwegians to do a phase 3 study.

In the interim the Norwegians continued to treat patients on an open label basis - many continuing from the phase 2 study. In this group the patterns of symptom responses were very consistent and seemed to parallel windows of B cell depletion. But note that this had not happened the blinded study - it looks as if these patterns were very much consistent with expectation bias.

Then when the case 3 study data were analysed there was no evidence of an effect of the drug.

Sadly, the beautiful patterns of response in the open label studies seem to show just how powerful subjective bias can be - not just pushing results to positive but making them look like consistent pharmacodynamic profiles. You find what you expect to find.
 
This is a link to the Reuters handbook of standards
handbook.reuters.com/index.php?title=Main_Page

These are the overall standards:

The 10 Absolutes of Reuters Journalism

Reuters journalists:

  • Always hold accuracy sacrosanct
  • Always correct an error openly
  • Always strive for balance and freedom from bias
  • Always reveal a conflict of interest to a manager
  • Always respect privileged information
  • Always protect their sources from the authorities
  • Always guard against putting their opinion in a news story
  • Never fabricate or plagiarise
  • Never alter a still or moving image beyond the requirements of normal image enhancement
  • Never pay for a story and never accept a bribe
and these are the detailed provisions on accuracy of quotes:

Quotes are sacrosanct. They must never be altered other than to delete a redundant word or clause, and then only if the deletion does not alter the sense of the quote in any way. Selective use of quotes can be unbalanced. Be sure that quotes you use are representative of what the speaker is saying and that you describe body language (a smile or a wink) that may affect the sense of what is being reported. When quoting an individual always give the context or circumstances of the quote.

These are the provisions concerning Freedom from Bias:


Take no side, tell all sides
As Reuters journalists, we never identify with any side in an issue, a conflict or a dispute. Our text and visual stories need to reflect all sides, not just one. This leads to better journalism because it requires us to stop at each stage of newsgathering and ask ourselves “What do I know?” and “What do I need to know?” In reporting a takeover bid, for example, it should be obvious that the target company must be given an opportunity to state their position. Similarly in a political dispute or military conflict, there are always at least two sides to consider and we risk being perceived as biased if we fail to give adequate space to the various parties.







 
CFS-tweet2.jpg


This then is the @Paul Watton tweet as shown in the edited version of the Reuters article. It is not clear whether all the outlets which took the syndicated story have made the modifications to include this. Fair, unbiased reporting might have pointed out that the claim of arrogance was not unreasonable. It was in response to Sharpe telling a doctor to read the papers. It is not clear how he knew that Allen Frances had not done so, or why doing so might make him draw different conclusions. In this context, which Reuters' journalists are required to give it is not obvious that the comments contained in the second paragraph are sufficient for an international news agency to vilify an individual.

The case is eve more dubious in the case of the tweets posted above at https://www.s4me.info/threads/speci...y-reuters-march-2019.8557/page-36#post-153303

It would certainly seem that the individuals concerned have potential ground for complaint.
 
rvallee said:
I don't know who this Kristian guy is, but "everything I don't like is a conspiracy" is an impressive worldview. Impressively bad, that is.
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Edit: Just to make it clear - Kristian Gundersen is a Professor, section of physiology and cell biology, at the department of biosciences at the University of Oslo. He has his own research group.
https://www.mn.uio.no/ibv/english/people/aca/kgunder/index.html

--

Kristian Gundersen is an academic and sceptic - that have very high trust in institutions, and strongly opposes any patient involvement in research.

His argument against patients pointing out flaws in PACE etc have basically been - but Oxford/Lancet/Kings College etc. Also the research council made ME the first runner out in a program involving patients in suggesting what research is needed and wanted, and beeing part of prioritizing. He had real issues with that.

His voice is taken more seriously then Vogt, but still not really an important person in the ME-landcape here. His main interest in the ME-debate is the debate itself - his words - and the meta-debate about the debate. But - he is also an biologist and researcher, with his own team, in a field that could be of relevance to ME as well - muscle physiology. So far he haven't been convinced/interested.

https://www.mn.uio.no/ibv/english/research/sections/fyscell/groups/muscle-physiology-gundersen/

But - if you (the general you) come across Gundersen on twitter, it would be a mistake to think he haven't read the litterature, the NAM/IOM-report etc. He have.
 
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dave30th said:
I haven't listened to it yet. But did he really say this?? That the other scientists are part of the anti-science campaign?
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I don't think he said it directly...

From @Lucibee's transcript, this is what Sharpe said:

"These journals – journals like Health Psychology – are at liberty to publish campaigns against the treatment – because that’s effectively what it was – but it’s very important that science takes its course with peer review and replication, and we don’t have science bent by campaigning."

and

"That of course is not true, but I think that fuels the hate, frankly, behind these campaigns."
 
inox said:
Kristian Gundersen is an academic and sceptic - that have very high trust in institutions, and strongly opposes any patient involvement in research.


His voice is taken more seriously then Vogt, but still not really an important person in the ME-landcape here. His main interest in the ME-debate is the debate itself - his words - and the meta-debate about the debate. But - he is also an biologist and researcher, with his own team, in a field that could be of relevance to ME as well - muscle physiology. So far he haven't been convinced/interested.

https://www.mn.uio.no/ibv/english/research/sections/fyscell/groups/muscle-physiology-gundersen/

But - if you (the general you) come across Gundersen on twitter, it would be a mistake to think he haven't read the litterature, the NAM/IOM-report etc. He have.
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He's dismissed those as being the product of pressure from activists and activism, unambiguously stating that they are political, not scientific documents. This is a stance I hadn't previously seen anyone take except for Edward Shorter (and his piece on the IOM Report was so scathing that even Simon Wessely objected to it as 'offensive').

He's also the only person I've seen who demands strict standards in discussion i.e. 'I won't respond to anything but peer-reviewed literature,' which is fine...but then he also seems to have no problem with the Lightning Process.

He accused @dave30th of 'harassment,' ridiculously baselessly, and like others sees no conflict in the idea of exercise as therapy in patients shown to be intolerant of exercise, because somehow people who can't physically tolerate exercise actually benefit from it.

The irony in all of this is surpassed only in the unbelievability of a situation where nobody seems to call him on these conflicting positions. But I'd bet he'd be the first person to point a finger if someone dared use an argument that incorporated appeal to authority.
 
hinterland said:
These journals – journals like Health Psychology – are at liberty to publish campaigns against the treatment – because that’s effectively what it was – but it’s very important that science takes its course with peer review and replication, and we don’t have science bent by campaigning."
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Is it just my reading or is Sharpe trying to convey that the Health Psychology PACE issue articles were not peer reviewed? He knows that they were, but he, if not actually saying they were not, is saying something that would encourage people to believe something that is untrue?

The Journal should be calling him out on what is getting very near to slander.
 
Is the phrase "crowdfunded by a global band of CFS/ME sufferers...." strictly compliant with this anti-bias provision:

We must also be on guard against bias in our choice of words. Words like “claimed” or “according to” can suggest we doubt what is being said. Words like “fears” or “hopes” might suggest we are taking sides. Verbs like rebut or refute (which means to disprove) or like fail (as in failed to comment) can imply an editorial judgment and are best avoided. Thinking about language can only improve our writing and our journalism.

What come in "bands"? Pirates brigands. Are there benign uses, other than musical?

I think we can see where you're coming from, Kate.
 
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