Cochrane ME/CFS GET review temporarily withdrawn

[adambeyoncelowe]

(bolding and italics added)

Where do you learn those things?

So doctors should be sociopaths? This is very concerning.

 

[Jonathan Edwards]

dr’s have to be treated as such (infallible etc). It’s the Unconscious collusion b’wn us & p’ts. Without it we get anxious Dr’s, mistrust & poor care. Few understand the need for these defences & why without them we have more anxiety, more tests, less patient satsifaction.

How can a trained UK doctor talk such pernicious gibberish?
Medicine is about medicine, not potty training and inferiority complexes.

 

[Mithriel]

She has no concern about doctors with ME, has she? In the days before CFS doctors were seen as particularly at risk.

 

[Sean]

Maybe

Or the cynic in me says if the strategy was (Sharpe style) to try draw out a lot of horrible tweets from the nasty activists and it didn’t work then you try to make yourself look a bit less of an idiot by a tactical apology

Yeah, excuse me if have my cynical hat on.

Also, if that was her aim then she clearly learnt nothing from Sharpe coming off second best and empty handed with his Twitter trawling.

I know what a bore I am , but this meme about collusion goes back a long way. This is Goldberg in 1991

"In colluding with one another, patient and doctor both achieve short term gains-but the patient is left trapped by his symptoms, while the doctor is trapped on an endless merry-go-round of physical investigations, which will, in the long term confirm the patient in the sick-role."

Seems like the thinking has not evolved much.

It is a one-trick act.

 

[Sean]

Medicine is about medicine, not potty training and inferiority complexes.

Her comments tell us more about what goes on in her mind than in her patients'.

 

[Barry]

I doubt Cochrane are very impressed by having the narrative ripped from them by the BPS crew and being made to look as though they've caved in to pressure rather than done what they said and responded to methodological issues.

I hope Cochrane's eyes have just been opened to what's been going on. This could play in our favour not just now but in the longer term.

Quite. It is in fact a perfect example of BPS responses whenever their science is challenged. Some deep rooted reflex seems to kick in, and they resort to the only defence they know - smear campaigning. The fact they are actually doing this to Cochrane now (if only they could really see themselves!) ... if Cochrane have a shred of scientific integrity (and I think and hope they must), then they will surely see through this BPS blustering for what it is - inability to actually provide any sound scientific responses.

 

[Sasha]

Quite. It is in fact a perfect example of BPS responses whenever their science is challenged. Some deep rooted reflex seems to kick in, and they resort to the only defence they know - smear campaigning. The fact they are actually doing this to Cochrane now (if only they could really see themselves!) ... if Cochrane have a shred of scientific integrity (and I think and hope they must), then they will surely see through this BPS blustering for what it is - inability to actually provide any sound scientific responses.

Yes - it's one thing to do this to patients but quite another to do it to another medical institution - and such an influential one. I really think that the core defenders of this review have been extremely stupid.

 

[Jim001]

(bolding and italics added)

Where do you learn those things?

This is beyond the pale. So it's YOUR "intense fatigue" that's most important here?? What a thing to say to a patient population of millions whose lives have been left in rubble by a lack of energy.

 

[Sasha]

It's shocking that Clare Gerada, a recent chairperson of the Council of the Royal College of General Practitioners, is, in 2018, saying that doctors need to be seen as infallible.

Patients certainly don't need this. We're not children and we're not stupid. We know full well that nobody is infallible and I'd far rather have a doctor say, 'I don't know' or 'medical science hasn't advanced far enough to tell us' than to have them pretend to knowledge or certainty that they don't have.

Indeed, plenty of doctors tell me that they don't know something and seem perfectly comfortable and confident doing so. This week, a GP I'd never met before told me, during our first consultation, that he didn't know what doctors did before Google was invented. And that's fine by me.

 

[Roy S]

I wonder if she 'played the victim' before she met Wessely or if she got that from him. He does it better.

 

[SallyC]

I'm not normally a conspiracy theorist but...

This may all be well known to you, I'm new to all these names but a bit of googling this tweeter (see picture)

brought up this

http://www.lobbywatch.org/lm_watch.html

Read the list of names. This feels a bit like SPECTRE!

His twitter timeline certainly fits with what the website page says, what the heck is going on with the SMC?

Apologies for the poor formatting of this post. And apologies if I've totally grabbed the wrong end of the stick.

 

[Jonathan Edwards]

what the heck is going on with the SMC?

Right end of stick. Some of us have been aware of the connection for a good while, going back to a former planet/forum but AW is a new name to me. The SMC is connected to a group of nutcases, that is for sure.

 

[Jonathan Edwards]

Yes - it's one thing to do this to patients but quite another to do it to another medical institution - and such an influential one. I really think that the core defenders of this review have been extremely stupid.

Presumably the press release from Larun was thought to be 'whistleblowing'. However, Larun was totally aware that the 'feedback and complaints' cited as the reason for withdrawal included a body of peer review from disinterested scientists who said that the review was unacceptable. It is not a good idea to 'whistleblow' on the basis that you have been found despatching substandard goods.

 

[Hoopoe]

Whatever their reasons, the network of people that Wessely and Fiona Fox belong to is highly motivated to shape public perception and politics surrounding ME/CFS.

The Reuters reported seems to have ties to the SMC, that journalist who wrote the Forbes article was part of that network, and I think there are other examples where someone from within the network is hired to attack patients. On Twitter, some tweets expressing shock and outrage about the decision to pull the review were also associated with this network.

Amusingly, they could be accurately described as a small vocal group of activists. Unlike us, they're actually well organized.

Is the hand that pulls the strings ultimately the health insurance industry? Or is it a case of some deluded people that have decided CFS is immoral laziness and malingering that must be fought against?

 

[Snowdrop]

Whatever their reasons, the network of people that Wessely and Fiona Fox belong to is highly motivated to shape public perception and politics surrounding ME/CFS.

The Reuters reported seems to have ties to the SMC, that journalist who wrote the Forbes article was part of that network, and I think there are other examples where someone from within the network is hired to attack patients. On Twitter, some tweets expressing shock and outrage about the decision to pull the review were also associated with this network.

Amusingly, they could be accurately described as a small vocal group of activists. Unlike us, they're actually well organized.

Is the hand that pulls the strings ultimately the health insurance industry? Or is it a case of some deluded people that have decided CFS is immoral laziness and malingering that must be fought against?

My guess is that they think people should mind there place in the scheme of things. Not accepting what you are told by people who tell you they are experts is very naughty indeed. And not to be tolerated. We must be put down. Uppitiness is a scourge that will lead who knows where.

 

[rvallee]

Maybe

Or the cynic in me says if the strategy was (Sharpe style) to try draw out a lot of horrible tweets from the nasty activists and it didn’t work then you try to make yourself look a bit less of an idiot by a tactical apology

They are far from tactical geniuses. They are only reacting to a situation that has spiraled out of their control, something they are not used to. The parallels with Trump are amazing. Sometimes heavy-handed overreaction is just that and there is nothing deeper to it.

I doubt Cochrane are very impressed by having the narrative ripped from them by the BPS crew and being made to look as though they've caved in to pressure rather than done what they said and responded to methodological issues.

I hope Cochrane's eyes have just been opened to what's been going on. This could play in our favour not just now but in the longer term.

Good point. It's clear they tried to pre-empt this but if Cochrane is actually serious about their long-term reputation this will massively backfire as in controlling the messaging they made Cochrane seem foolish and appearing to have caved in the face of violent extremist, barely ambulant, activists, which could not be further from the truth.

They clearly have enormous influence, being able to place favorable coverage at BBC, Reuters and other outlets, but in doing so they are placing organisations who are supposed to be independent and objective in a very tough situation. Political influence only goes so far. When it starts being more embarrassing than saying no, it rarely goes back to the way things were.

I'm getting curious about what the precedent for this is anyway. Retractions are a reality in science, but when has an influential paper ever been retracted by activist pressure only to have been found correct later? Has that ever happened? Meanwhile the opposite, flawed research being pulled off for legitimate issues, is a fundamental process in science. Bad research happens, it is found to be flawed, it gets retracted. Really weird to see the framing of "activist" being taken at face value.

 

[Barry]

All deleting her tweet did was remove my response to her from her twitter record too, so her followers won't see my protest.

Your tweet doubtless hit home then, because she clearly didn't want her followers to see the exchange. Maybe someone close by is urging some caution? Possibly beginning to realise the smear campaigning could be an own goal?

 

[sea]

Is being a patient a 'role' we can step in and out of?

Absolutely she believes being a patient is a role. That’s why they don’t want to see patients given disability support or useful aids because it reinforces the “role”
The cure obviously is to stop believing you’re ill, stop “acting” as a sick person

 

[sea]

By the way, if anyone can help me get the unsavoury image of Sir Simon whispering into Clare's ear whilst she tweets out of my mind I would be most grateful. It came unbidden, and now I can't get rid of it.

There’s CBT for that.

 

[rvallee]

Your tweet doubtless hit home then, because she clearly didn't want her followers to see the exchange. Maybe someone close by is urging some caution? Possibly beginning to realise the smear campaigning could be an own goal?

Gerada repeated many of the baseless tropes and some reminded her that as a very high-profile public figure and medical professional she cannot make wild accusations and conspiracy theories without consequences.

Fitting that in that thread she talked about power needing accountability. Fortunately the Internet does not forget. For people of influence (and affluence) talking bullshit carelessly can become a problem.

They certainly won some solid points with that preempted SMC-Reuters disinformation. The reaction has been largely negative from the framing of raging activists. But that will be short-lived. Bullshit walks but it inevitably petrifies.