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

well, I guess I said "should" be able to see through it, I didn't say they all would! But the editor in charge of making decisions about wire stories is working on a different level than an editor working with the reporter on a story. It's understandable that one would assume a story was well-edited. Who knows if the wire editor even read the piece.

 

I noticed that as well.

 

Does anyone know if the NY Times has an ethics board or ombudsman?

 

Now that Kelland and Reuters have provided a degree of international notoriety for @Paul Watton and Anton Mayer one wonders whether detailed examination of the tweets is called for with a view to possibly demanding redress from all the outlets which have published the article uncritically. Any reasonable person reading the article would infer that they are the most culpable of all those who have communicated with Sharpe. Why would the less culpable be held to account and others ignored? It is implied that their messages are not only abusive, but intimidating, although the only evidence for intimidation seems to be Sharpe's claim that he is withdrawing from the field. There could be any number of reasons for that-if indeed it occurs.

It might be time to consider the full tweets and the context of the words quoted, comparing them to any other known messages tweeted at Sharpe, which might be considered comparable or worse. One has also to wonder whether there has been fair representation of Paul's position, given the lengthy telephone conversation for which contemporaneous notes apparently exist, and whether that is in compliance with Reuters' supposed codes.

 

It has to be said, he's Scottish and hes a psychiatrist, surely he's heard the C word before.

If scientific critique from his peers wherby they try to explain to him that his claims require objective evidence devised by adhering to the scientific method and an alleged patient dropping the C bomb is enough for him to run off into the night and find a new field one has to wonder if psychiatry was ever a good choice for him.

 

@JemPD,
ME advocate Eileen Holderman who was a voting member of the CFSAC shares in this tweet thread the many times Unger has wrongly treated ME as having a large psychological component. I only just read today that Unger was co author with Reeves of his dreadful Reeves criteria. I doubt Kelland did have to do much splicing of quotes by Unger. Unger has said before that the CDC only dropped GET and CBT as patients misunderstood the terms not because they are based on false science.

https://twitter.com/user/status/1106322297252704256

 

... says the man who recently requested retractions ...

https://www.s4me.info/threads/trial-by-error-professor-sharpe’s-retraction-requests.8230/

... but I guess it's different when he does it.

 

Bizarre, presumably then such activities are still on the CDC recommendations list and are referred to as, "the treatments that shall not be named yet are based on sound science"?

 

Soooo....

https://twitter.com/user/status/1105879083123179520


He's calling several people liars. Is it worth pointing that out?

At this point it gets official and it's very sticky to deal with and yadiyadida but he's making ridiculous claims that basically run the whole list of logical fallacies.

Nobody cares about Michael's Sharpe reputation. It could have been a spaceship from the future or Hogwarts' sorting hat that published the PACE papers and others in the same vein and the response would have been the same. Hell, it could have been an injured unicorn with puppy eyes the size of a dinner plate begging for the welfare of its crippled orphans, and also strangely to not retract the PACE papers, that the response would have been the same.

And the point is not to get papers retracted but to address flaws in published research. Publishing a paper is not a final statement that prohibits criticism, especially when its conclusions are applied in real life, where they absolutely fail to show any measurable progress. The research is flawed and must be downgraded to the tier it belongs to: entirely subjective, unblinded, non-controlled and clearly contradicted by objective reality.

They were warned that their ideas were wrong. They can't say they didn't know it could be this controversial after leaving a hollow shell as protocol and moved the goalposts wherever after having fashioned the whole thing to maximize their effect. The exact things that they were warned about turned out to be entirely correct, that they relied too much on flawed assumptions and would just fail to deliver anything because they just made the assumptions up.

I've seen pathetic but this is really high up there, close to the top. Millions of people have suffered from their incompetence and they whine that they are the victims. Unbelievable.

 

Ha! Famously, no.

Following criticism of how bad their coverage was for the 2016 election, the NYT editor decided to just eliminate the position of public editor.

It was pretty controversial and remains but basically: they don't care what anyone thinks. And it shows.

Anyway this would be down to Reuters. NYT chose to just publish as is.

 

Well, we started as more dangerous than two war zones so I guess that's pretty good progress.

 

https://twitter.com/user/status/1105992125227958272

 

Worth giving a shot. The only issue is whether we could publish something useful. This would go hand-in-hand with what I suggested in another comment, that it could be worth gathering a sampling of typical tweets sent to the researchers. We know that overall most of them are trying to reason with them and/or beg them to understand what happens in real life.

Even the accounts they chose as smear basically paint the exact picture of someone who is sick, begging for help and pleading with someone who is responsible for their misery to see reason but is met by stubborn denial of reality.

It could go like this:

• Put relevant accounts' relevant tweets in a spreadsheet
• Label the tweets based on a general theme
• Generate graphs that show the themes from various facets
• Take samplings of common themes (even the bad ones)

The biggest task is with filtering down to relevant tweets. It's also possible there are existing web apps that can do something like this far easier.

Basically: the researchers allege abuse from patients, we can show it's false, that most of the interactions patients had with them were pleading for help and trying to reason with them, in many cases reporting harm. We can show on record that their version is false. We've seen from the Mathees information tribunal decision that they can't continue making disproven allegations. Well, we can disprove this latest batch once again.

Our tormentors just made a big splash with false allegations, we can judo them into the ditch. They cherry-picked the hell out of the things we tell them. This is something we can correct in a way they can't refute. The evidence speaks for itself and it would be a perfect response.

And it's worth pointing out that we get quite the bit of abusive language ourselves. Maybe that adds up to too much work but many of the attacks we get are far more demeaning than "I hope these bad researchers retire in shame".

Right here, "you not patients, you're a cult":
https://twitter.com/user/status/1106690167102980098


Not expecting any of the PACE ideologues to correct that.

Some more good examples of a bit of everything (fascists, sect):
https://twitter.com/user/status/1106692602244546566


The simple truth is that interactions from patients to psychosocial ideologues are far more civil than what they speak about or to us or from their allies. Remember Blanchflower? The guy called all of us lunatics. He's White's friend. What White told him about us lead him to call us deranged lunatics who just refuse to get out of bed or whatever. Whiners, he liked to call us.

And they dare whine that they are silenced and trolled when we beg for mercy? To hell with that. It's time to correct the record.

 

I should make clear it is me who filled in the words ‘not based on false science’. All I remember is Unger in the past didn’t say GET and CBT were taken down because science has shown them not to be effective. She just used some nonsense wording that didn’t really make sense if I recall. Googling again I found a blog post in 2017 on Jennifer Spotila’s OccupyME blog which said Unger told David Tuller that though CDC took down blanket recommendations for GET and CBT they still believe exercise can help some people with the illness. When I last looked at the CDC site it still mentioned that the long term aim was to do aerobic activity and referred to activity increases. I didnt feel it was a wholesale rejection of GET.

 

Someday someone is going to make a big book filled with all those tweets PwME have been collecting, I can’t wait.

 

This person is irrational.

 

Well, I couldn't help but point out that Sharpe himself tried to silence Julie Rehmeyer. I imagine his response (if there is one) will be to say that STAT and Rehmeyer are lying.

https://twitter.com/user/status/1106696042584535040

 

Who has said he has contacted the institutions of researchers who have had critical reviews of the PACE trial published, to complain about them?

I've seen it claimed that he has contacted publications, but that's different.

Maybe I missed something, but it would be good to have the exact quotes lined up to make sure that there is a discrepancy. It's always important to get the facts exactly right.