Trial By Error: Crowdfunding, Week 2; and more Sharpe and Chalder

http://www.virology.ws/2019/04/15/trial-by-error-crowdfunding-week-2-and-more-sharpe-and-chalder/

 

“the authors of which included campaigners against any psychologically informed approach to the treatment of ME or CFS,”

These are the authors:

• Carolyn E. Wilshire
• Tom Kindlon,
• Robert Courtney,
• Alem Matthees,
• David Tuller,
• Keith Geraghty and
• Bruce Levin

Which of them is Sharpe claiming is a campaigner against any psychologically informed approach to the treatment of ME or CFS?

I couldn't see where to find Sharpe's response to the Annals piece - does anyone have a link?

Personally, I fear Tuller is being overly optimistic here as I don't see much remaining momentum: "It will not quell the momentum of this ongoing paradigm shift in how ME/CFS is viewed, researched and treated." If anything, amongst the people whose views will most affect us there seems to have been a reassertion of old prejudices, combined with an increase in ill-informed and over-confident patients posting silly things on the internet.

 

Well I have to say I'm taking somewhat of an international view here. And I prefer to put an optimistic spin on things when I can. In the UK, I would say things are still largely stuck at the establishment level, that's probably true. And I do get concerned in the UK that the IAPT/MUS movement could outweigh any advances on the ME front.

I'm going to post the link when I get sent it. I couldn't find it either but was sent a copy of the letter and know it was in fact officially exists in cyber-space somewhere.

 

:chef's kiss:

Sharpe's whole shtick is really limited to "I'm right because I said so". He seems incapable of any self-reflection and has a cartoonish understanding of human nature.

 

I can't tell if Sharpe is an idiot or if he's cynically promoting stupid views that serve his interests.

Could that phrasing re Kelland be a mistake - ie something that could be viewed/portrayed as a false claim that she had a paid position with the SMC, rather than a joke?

Everyone who has been following this issue will understand what was meant, but others probably will not. I don't know how much blogs should account for how they will be read by people unfamiliar with the details of the topic?

 

Has anyone been able to access the rituximab paper and Rowes editorial?

 

I appreciated the metaphor of IAPT as a metastising cancer.

Spot on as metaphors go.

 

Kelland's reporting on ME has 100% been PR to the personal benefit of Wessely and his colleagues. That's her choice and I don't see it as a joke. When a journalist chooses to do PR, they should be called out on it.

We can't censure ourselves because of how our words will be distorted. They will be no matter what, might as well be blunt about what the truth is. A physician who promotes pseudoscience is not doing medicine anymore than a reporter who moonlights as a PR representative is doing journalism. It's not about who they are, it's about what they choose to do. Kelland may do some actual reporting some of the time, but in this case she donned the PR hat of her own free will.

 

Kelland can fairly be described as a propagandist, but that sort of labelling can end up being viewed as just an empty insult to people who don't know the details. People familiar with the details will recognise that the labelling in this blog was a reference to Kelland's presenting Tuller as just an activist, but I don't know how many readers will not. Those sorts of insider references can make a blog more enjoyable for regular readers, but I can see how they could cause problems too. Seeing you just quote it out of context made me wonder if there were possible downsides.

It seems that the battle over PACE is now primarily a PR war, with the recent response to Wilshire, the Kelland piece, etc really ignoring the scientific issues. The PACE lot seem to think that this is the best tactic for them, and that they can get away with it thanks to their positions/allies within the media and science institutions. We probably need to adapt the way we do thing to account for their changing tactics but it's difficult to know exactly how to do this. The response to the Kelland piece shows that many people do view that sort of work as legitimate journalism and that we have work to do to persuade them otherwise.

 

It always was, at least in the last decade and I suspect for several decades. They practice medical politics a lot more than medical science. As I have said for years, its more about persuasive rhetoric than logic and evidence.

Clearly its not about good science. Its about who they can convince.

 

And calling it out is the only way to expose it and allow people the chance to educate themselves on yet another fake news item. They will use these tools regardless of whether we do or do not say anything. Saying nothing is to their advantage.

 

There is a lot at stake.
The methodology underpinning PACE underpins so much behavioural research that little would hold up to scrutiny. That simply cannot be permitted to happen for career reputations or political implications.

We have

changes to primary care in England paving the way for privatisation

IAPT as a sticking plaster wrapped in a cloth of respectability , run in some cases as private companies , whilst those with significant mental illnesses will struggle for treatment options

FND being rolled out as a catch all which will preclude further investigations. With its misogynistic bent it will do nicely in the current political climate.

CSS being bastardised to lend a biological veneer for psych theorising - keeps the grant funding stream going

FII as the option for families whose children who fail to respond in the " right way" to " treatment"

An increasingly Victorian outlook re work, deserving poor, definition of poverty , control of information , resurgent colonial attitudes, a public that really don't care much for things that don' t affect them , or that they don' t understand ( how much furore did the UN inspector' s report really kick up ) .

Inequality is expanding. The distraction of the Brexit mess is precluding proper scrutiny of much.
Bread and circuses are the order of the day.

When the s***t hits the fan, there will definitely be too much " product" to service. God help us .

 

It's a hard balance to strike because of the power asymmetry of eminence-based bullshit. Propaganda is always veiled in some interpretation of the truth, so no reason why the truth shouldn't shield itself a bit with creative use of language. The SMC actually (kinda) boasts about being a PR force to reckon with, but it's definitely not common knowledge that they do take it to 11 and sometimes just drop the pretense.

Meanwhile Sharpe continues to blatantly lie about this having anything to do with some imaginary butthurt against psychology, despite much of his own ire seemingly being directed at the JHP special edition and other psychologists who exposed him in peer-reviewed research. It's just weird.

There is an old Twilight zone episode in which a village is terrorized by a kid who has developed superpowers and everyone just tries to please him despite ridiculous demands and avoid his wrath. Feels familiar.

 

My thinking too.

 

"It's A Good Life" by Jerome Bixby. The original short story was written in 1953 and it has been anthologised, I would guess, dozens of times.

 

was that the one with Bill Mumy before he was on Lost in space?

 

Apparently it was. https://en.wikipedia.org/wiki/It's_a_Good_Life_(The_Twilight_Zone)#Cast

 

Oh, yes.. ...and there's the 1991 "Simpsons" version: Part One and Part Two.