Trial By Error: Some Thoughts About an Upcoming Article

I was really meaning a more general complaint (perhaps to the RCPsych or the GMC) about the issues @Yvonne raised – ie, the unethical behaviour of publicising alleged threats and harassment.

 

Yes and I've referred to it more than once at this point.

 

Feilden must be mildly vexed. They fed him a story, and gave him a prize, but they failed to give him the scoop. How can he ever trust them again?

I think it worth mentioning that if JE's theory about the reasons for non disclosure are valid, the patient concerned could not have been one of his. He (SW) has often let it be known how happy his patients are with his treatments.

 

I also would like to mention the thing we're not discussing.

I just want to say I'm glad that Valerie Elliot Smith wrote about it. I like to know things rather than not know them. I disagreed with the form and conlusions, in which she made the information public, but I think writing about the info she had, was the right thing to do.

I also want to highlight that speculating about why BPSers haven't used this information before, is just speculating. We don't know why this video hasn't been mentioned before. So let's be careful in making conclusions about this.

 

Probably a waste of time as long as Wessely and Gerada have political influence. It would never be treated appropriately.

Inevitably it will look pretty bad with hindsight, but we're not there yet.

 

If we're on the topic, I noticed another interesting "story" from... Bentall? He was on the NICE trial and played some hokie with Blanchflower during his meltdown. He mentioned a car bomb threat. First I've heard of it. It probably came in the same envelope as Crawley's fake ransom note.

It would be interesting to get to the bottom of this whole violent borderline psychopaths militants threatening the downfall of civilization if we don't get our way narrative. It's such a bizarre aspect of this but it clearly has done its work of completely alienating ME advocates even after all this time.

It's an elaborate narrative but it's been incredibly successful and probably deserves a little more scrutiny, it seems to have created a real impact that still weighs on decisions today. The most successful aspect of it seems to be how it's completely indeterminate, people can fill the gaps with their imagination and think the worst, as we've seen from the Cochrane-Reuters report.

Quite a feat to paint the desperate pleas for help of a highly disabled population and turn it into a myth of barbarian hordes destroying everything in their paths and who may or may not be committing acts of cannibalism or other indeterminate acts of pure evil. Anthropologists will have a field day with this stuff in the future. So completely bizarre.

 

I presume you mean the FINE trial. (Yes, it was a nice, fine trial wasn't it!)

 

I really wonder how alleged spurious death threats justifies people can be declared to be ill enough to enter a trial and simultaneously declared recovered at the same time logical.

 

Completely agree. I'm probably repeating what others have said but this tactic allows all criticisms to be thrown aside as irrational shouting by ill-informed patients. The narcissism it must take to sustain this thought process is breath-taking; to be so confident/arrogant that you are correct that you simply will not hear of any evidence to the contrary.

I know it's just a film but Dallas Buyer's Club is a good example of when patients had to protest against authority to prove they were right, which ultimately led to much better treatment. I'm not condoning self-medication as safe in all circumstances though!

As stated by others it is so unprofessional to engage in this kind of smearing of patients. It must be highly unpleasant to be the target of criticism when you are part of a 'caring' profession and your motives are to help. I know this from personal experience, but whenever I received negative comments/complaints my first instinct was always what did I do wrong/what should I have done differently. Not to shout that I knew best and anyone complaining was simply disruptive.

I think the motives of the BPSers however are much more of a divine authority whose methods must never be questioned. To continue to dismiss the valid concerns of so many is unbelievable.

 

I was unable to complain at the time, however I did make a specific complaint to the GMC about the authors of a letter to The Independent in 2012 (sent as part of the SMC campaign) as part of a wider complaint about the PACE authors last year. I received the standard dismissive response which did not address this specific issue.

 

It's also chilling that they seem to know they are protected and can blatantly get away with junk science and propaganda simply because it suits a political narrative.

Its really shines a light on the lack of scrutiny on "evidence based medicine" and how appalling journalism is and that its success rate is largely based on the public being so dumbed down and docile until something of the like actually happens to them and they have to awake from their stupor.

One thing I often hear around ME is, "this is the biggest scandal of the last thirty years etc.

Its not, they are ten a penny.

Some of the other scandals are pure magicians tricks but people usually only understand the thing that directly affects them and learn to see the deep layers of propaganda involved whilst simultaneously denying it can be possibly happening in other situations because "someone would say something" or "they couldn't possibly get away with that".

They could and they do.

 

This is an intentional strategy which has been very well planned and carried out by them which makes us look very bad in the public domain. And it seems that they plan to use the same means to discredit David Tuller himself . It is unlikely that they can attack the content of his work but by attacking the person they can discredit him so much more easily and in the eyes of so many . They know everything about playing the man and not the ball. And it is difficult to counter this in an effective way. How many people here have ever threatened a doctor or one of these scientists. We have been dealt a very bad hand by people who have not been honest. (in my opinion) they use their titles and society's respect for those titles to attain their grubby ends. I am angry .I hope everyone here is angry. It is what they call a righteous anger and and its objective is justice and truth and most important for us, good science. And it is not destructive. It is healthy. It seems that plans are afoot to deal a fatal blow to David Tuller with regard to his work. I so hope that it won't succeed. His work has been and is so crucial to our community. Im sure that work has been done at a high personal cost to him. I hope that the personal cost to him is not about to get too high and that whatever comes can be countered in a definitive way.

 

Damn. Yes. I lost track of my Orwellian acronyms.

 

Exactly.

There is far too much money / ego / career / reputation at stake for the BPS brigade not to double down to protect themselves. This was predictable. We should have a wager on what day the assault on David will be launched.

I predict the article won't just be reporting about David's approach to exposing fraudulent researchers, but will include reporting some sort of 'legal' attempt to have him silenced. They will be orchestrating a multi-pronged attack on David (and by extension, all people with ME) via media, social media and legal avenues to undermine, discredit and shut him down. I say only half-jokingly he should be wary of being 'sectioned' while on UK soil.

 

I think that it is possible to become overconcerned about future events, This will just be another article. It is hard to see how it can say much that has not been said before. No doubt there will be a journalistic requirement to reflect all sides, not just one.

If the journalist is watching this thread we may have made life a little more difficult. He or she will be aware that lazy peddling of the SMC line will be scrutinised - quotes from a usual source deleted. Mention of death threats will lead to enquiries regarding any videos produced to him/her. Any references unfairly at variance with @Paul Watton 's notes will be questioned. We can play at psyops as well as they can.

 

Glad we’re keeping hopeful

Hopefully you’re not correct.

 

They are in survival mode, their house of cards is under attack and to them its an attack on their value and even livelihoods

They believe themselves to be the real victims, they not only believe their own lies they think we are the problem and they are our saviours
Its delusional but they are desperate and desperate times (for them) call for desperate measures.
I hope in retrospect this will be known as the dead cat bounce for them because a biomarker and especially treatment will decimate their house of cards.

This is perhaps the best way believing owns own lies backfires, acting self destructively based on them. If they actually try this they would lose again in court. The media would not be able to easily protect them if they present a case made of obvious lies and personal attacks and lose. The biggest risk for us in such a strategy is the money needed for legal counsel and a sympathetic to them judge/jury who thinks their ends justify their behaviours. Its not likely but it does sometimes happen.

 

I don't think we can!

Personally, I think that questioning death threats etc is a bad idea in almost any situation. Even in cases like Crawley's claim that the Sunday Times cover was an e-mail sent to her threatening to cut her balls off, where we have the graphic designer who created the cover said this was not true, it's very difficult to raise concerns about that without sounding creepy and bad. If we know that we're talking to someone who cares about the details and will give plenty of time to explore the issue carefully then maybe that sort of thing can be raised, but in a normal context when we already face so many prejudices, I think that we're better off just trying to focus on the science.

It really wouldn't surprise me if some people had sent stupid, unpleasant and threatening messages. Just look at what politicians are sent on social media every day. If there's an attempt to use that to undermine or dismiss concerns about research like PACE, without engaging with the details of those concerns, then that needs to be pushed back against, but imo even legitimate countering of misleading claims about harassment can end up being counter-productive for advocacy efforts around work like PACE.

I think that some people may be underestimating how much we still have stacked against us. If PACE collapses it's going to be very embarrassing to a lot of institutions and people, so we're going against the self-interests of many of the people in the UK medical research who are meant to be in the position to provide independent scrutiny to medical research. There are also a lot of UK science journalists who do not like us, and are already on record tying their own reputations to the support of Wessely, etc. It's easy to see how lots of stories could be produced citing authoritative sources and ignoring the details of the dispute. Wessely, etc are in a much better position to play the propoganda campaign than us, so we need to be very careful and try to keep focusing on the substance, and keep working to make sure the concerns we raise are accurate and cautiously phrased.

 

I disagree
If humans were rational this would be a great method. But they are not, emotion overrides reality.
The reality deniers know this, they lie and bully their way to power. If we ignore this then we are putting on partial blinders and giving them an opening.
Science is an integral part of defeating them but if all it took was being right then Tuller's first article would have crushed PACE with its well explained analysis of their malfeasance. We need to not only be right but counter their bullying tactics and win the propaganda war to get to future scientific progress.

They have power and influence. We can either blinder that or we can find ways to defeat this advantage.