Correcting the record

[rvallee]

To put it simply: we are falsely accused of unspecified misconduct. The vast majority of advocacy we do revolves about us BEGGING FOR HELP and pleading those responsible to understand what happens in real life. That we are accused of being fake patients, cultists, deranged lunatics, fascists trolls is absolute madness and a direct product of the researchers who make those accusations. This is wrong in so many ways.

We need to correct the record. The version that is being sent out is wrong and we can correct it on record. Not in the media like cowards do but in proper form. This means peer-reviewed research so we need an academic roster for it to have an impact. I have laid out a rough outline in the thread on the "sPEciAl rEPoRt" about how silenced the poor sods are. I'll copy it below because it's a starting point.

I think this is worth doing. The goal is to produce a piece of peer-reviewed research that analyzes recent years of advocacy (maybe the last 2?) from ME patients and our allies. In the simplest possible way. I don't know how to go about that. I can do parts of it but I know we can do this together and that it's worth it.

A court has already ruled them to be gross exaggerators. Let's build on that and correct the record.

 

[rvallee]

(copied from https://www.s4me.info/threads/speci...y-reuters-march-2019.8557/page-18#post-151382)

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.

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":


Not expecting any of the PACE ideologues to correct that.

Some more good examples of a bit of everything (fascists, sect):


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.

 

[Hutan]

I think there is certainly something in this idea @rvallee. We've seen how academic papers can make a big difference.

There's this institute at University of California Berkeley. I mention it because perhaps @dave30th knows someone there who could be interested in the idea.


But there must be academics in lots of institutes around the world who might like to look at how a small group of influential people have controlled the narrative around a fairly common illness, painting patients as deluded, aggressive and anti-science.

 

[rvallee]

This thread of references (https://www.s4me.info/threads/the-harassment-campaign-references.661/) highlights the difference in claims from previous campaigns. ME "activists" went from being more dangerous than two war zones and making death threats to being mean on the Internet.

Previous campaigns (2009-2012):

• Torrent of abuse
• Vicious campaign
• Death threats
• Intimidation and abuse
• Safer to insult the prophet Mohammed
• Zealots terrorize
• Persecution
• Commendation for standing up to "militants"

Contrast this with the current campaign:

• Study to be withdrawn
• Online activists "silencing", not clear how
• People are mean on the Internet

This is likely in large part to the Mathees tribunal case that made the exaggerated claims impossible to maintain.

It should not be possible to go from "these zealot militant terrorists are more dangerous than two war zones" to "some people are mean on the Internet" without a proper explanation. This is a massive failure on the part of newspapers that published every variation without seeing any problem with the massive change in narrative.

It's also pretty obvious that those PR blitzes are coordinated, thanks to the SMC. Far from being silenced, they work from a privileged position where their words are taken at face value, even when they differ from previous claims they made with equal confidence. Wessely and Sharpe had clearly moved on from the "definitive trial" while Chalder and Crawley are still doing well-funded research. Nobody is being silenced, this is as weak a claim as it gets.

News coverage could be an alternative source to analyzing advocacy. It contains bits of everything. It clearly shows this is as typical an advocacy effort as it goes, made by sick people who are pleading for the bare minimum. One thing is clear is that former claims have been simply abandoned without explanation despite being serious accusations that are miles apart from reality.

 

[rvallee]

Isn't Twitter great? Totally forgot about this: https://www.researchgate.net/public...tant_Patient_Protest_in_a_Medical_Controversy.

Are ME/CFS Patient Organizations “Militant”?: Patient Protest in a Medical Controversy

We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.

 

[Snowdrop]

Hi @rvallee

IIRC you may have missed one of the earlier accusations against us. I think I remember seeing us compared to violent animal rights activists.

 

[rvallee]

Hi @rvallee

IIRC you may have missed one of the earlier accusations against us. I think I remember seeing us compared to violent animal rights activists.

I think that was a special report from the SMC. The implication was clearly that of the militant kind, implying but not quite voicing "eco-terrorist".

We have been called far worse by friends and allies of the PACE ideologues than the examples they dug up. There is way more stuff out there, I only took from the list of references in the thread and it still amounted to highly inflammatory abuse from a small sample alone.

A full review would be very illuminating, especially how the narrative evolved over time and had its inflection point from the Mathees tribunal decision that cleaned the slate of all their past claims (except the weak claim by Wessely that he has his mail scanned, which clearly projects the idea of poisons or mail bombs).

 

[rvallee]

In an interesting twist, Sharpe and Wessely have taken the liberty to address some of the conclusions every reader on the Internet have jumped to based on innuendo and the heavy bias in coverage.

Sharpe: "it's not really the trolling", which was half of the outrage
Wessely: "it's certainly not about militant patients either", which was the other half

Indeed the implication from most articles is that patients demanding redress on a systemic injustice were mere trolls, deranged lunatics who were attacking respectable scientists. Of course Sharpe and Wessely know these people are actual patients and as such do not qualify as trolls, merely as aggrieved parties suffering from the consequences of their work and raising genuine concerns.

This was obviously unsustainable and I commend Wessely and Sharpe for correcting the record on this matter. It does, however, undercut the entire premise of the current PR campaign, which is entirely based on the premise that militant patients are hindering their work. That is nothing of the sort and this misrepresentation has been corrected.

This correction should be reflected in the coverage. How do we do that? Straight at the SMC? Or at the first shot at Reuters? It's already out there in multiple variations so that becomes a problem because now incorrect media coverage is causing grief and angry mobs to insult a sick population with legitimate grievances.