Cochrane ME/CFS GET review temporarily withdrawn

Trish said:
Except in our case we're trapped in a merry go round of psychobabble and patient blaming, and denied the physical investigation.
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Welcome to the BPS misery go round.
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.

Dr’s defences are fragile. Easily shattered by complaints, intense fatigue, shame. Without these defences (invincibility, detachment, denial of vulnerability) we get anxiety & fear & hopelessness. Patients then suffer.
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Anyone else suspect that when Clare says "Dr's" she actually means her husband? Does she really believe in Simon's infallibility, or is she merely unconsciously colluding with him lest his fragile defences are shattered by complaints, intense fatigue (you have to be absolutely shitting me), shame. After all, without his defences (invincibility, detachment, denial of vulnerability) they would get anxiety & fear & hopelessness. The wife then suffers.

I thought it was only the pope who claimed infallibility:

According to Catholic theology, there are several concepts important to the understanding of infallible, divine revelation: Sacred Scripture, Sacred Tradition, and the Sacred Magisterium (Teaching Authority). The infallible teachings of the Pope are part of the Sacred Magisterium, which also consists of ecumenical councils and the "ordinary and universal magisterium". In Catholic theology, papal infallibility is one of the channels of the infallibility of the Church. The infallible teachings of the Pope must be based on, or at least not contradict, Sacred Tradition and Sacred Scripture.
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He's a chancer that Sir Simon.
 
TiredSam said:
Welcome to the BPS misery go round.


Anyone else suspect that when Clare says "Dr's" she actually means her husband? Does she really believe in Simon's infallibility, or is she merely unconsciously colluding with him lest his fragile defences are shattered by complaints, intense fatigue (you have to be absolutely shitting me), shame. After all, without his defences (invincibility, detachment, denial of vulnerability) they would get anxiety & fear & hopelessness. The wife then suffers.

I thought it was only the pope who claimed infallibility:



He's a chancer that Sir Simon.
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Clare Gerada and Sir Simon Wessely


“Folie à Deux”
 
Here is the thing, if you analyze this whole thing, it all goes around the same one person if not 3 tops, so we need to point that out, and zero out on the real culprits of this debacle, the rest are just puppets, we need the puppeteer down.
 
So there's a lot of strongly negative reaction to the framing of the Reuters article. They sure did a good job of preempting and the irony is certainly not lost on them that as they have been bullying us for years, they managed to get other people to bully us by claiming we are bullying them. All without evidence. Which somehow should backfire if this were a normal situation.

Until there is a further statement from Cochrane this should continue. How do we address this? The article definitely falls short of Reuters' policies and fails at journalism 101, in addition to being inflammatory. And it's working amazingly well. We're fascist trolls, y'all! And we're also "nonsense", somehow.

I think we need at least to have Cochrane make some sort of statement to deny (further, since it's the initial article anyway) those claims of bullying because they are absolutely being taken at face value. Nothing more, but clearly "this is not about patient pressure" is... somehow... ambiguous or falls short of overruling confirmation bias anyway. It's getting a little bit out of hand, to be honest.

I think we'll need the journalist to address at least the lack of evidence and that these are mere allegations. No matter what her role in this she is responsible for publishing inflammatory accusations without evidence. It was a careless piece of reporting.

I don't think we can expect much from Reuters, it's just too big to get anything done for now. But this is baseless slander of an already stigmatized population. Surely there are some grounds to at least have some of the parties involved state the facts and that patient involvement in scientific publishing is not terrorism.
 
Sasha said:
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.
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Just three simple words would make all the difference: 'I don't know.'

sea said:
There’s CBT for that.
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Probably doesn't work. :whistle:
 
I get that it's a stressful job to see sick people all day but seeking comfort in an illusion isn't the answer.

One of the functions of psychosomatic diagnoses is creating the illusion that a problem is understood and managable when in reality it is neither.

Unfortunately this illusion prevents scientific progress, thereby ensuring that patients with such problems will continue to be frustrating.
 
SallyC said:
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.
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Sally, I would be interested to read the whole of Keith Geraghty's reply, is it possible at all? Only if you are up to it, of course.
 
rvallee said:
So there's a lot of strongly negative reaction to the framing of the Reuters article. They sure did a good job of preempting and the irony is certainly not lost on them that as they have been bullying us for years, they managed to get other people to bully us by claiming we are bullying them. All without evidence. Which somehow should backfire if this were a normal situation.

Until there is a further statement from Cochrane this should continue. How do we address this? The article definitely falls short of Reuters' policies and fails at journalism 101, in addition to being inflammatory. And it's working amazingly well. We're fascist trolls, y'all! And we're also "nonsense", somehow.

I think we need at least to have Cochrane make some sort of statement to deny (further, since it's the initial article anyway) those claims of bullying because they are absolutely being taken at face value. Nothing more, but clearly "this is not about patient pressure" is... somehow... ambiguous or falls short of overruling confirmation bias anyway. It's getting a little bit out of hand, to be honest.

I think we'll need the journalist to address at least the lack of evidence and that these are mere allegations. No matter what her role in this she is responsible for publishing inflammatory accusations without evidence. It was a careless piece of reporting.

I don't think we can expect much from Reuters, it's just too big to get anything done for now. But this is baseless slander of an already stigmatized population. Surely there are some grounds to at least have some of the parties involved state the facts and that patient involvement in scientific publishing is not terrorism.
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The decision, described by the scientists involved as “disproportionate and poorly justified”, is being seen as a victory for activists...
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Larun told Reuters she was “extremely concerned and disappointed” with the Cochrane editors’ actions. “I disagree with the decision and consider it to be disproportionate and poorly justified,” she said.
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[All bolding mine]


I believe that clearly makes it one scientist involved, speaking for herself, not scientists.
 
rvallee said:
I don't think we can expect much from Reuters, it's just too big to get anything done for now. But this is baseless slander of an already stigmatized population. Surely there are some grounds to at least have some of the parties involved state the facts and that patient involvement in scientific publishing is not terrorism.
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Is there any form of press ethics committee or something it could be reported to? This normally works well in Norway, but then of course we are a tiny nation and the amount of complaints are probably more manageable.

The simple fact that they have not asked for a comment from the patient organizations they accuse should be enough to flag it. All parties should have the option of answering allegations.
 
It's weird how 'activist' and 'lobbyist' are being used as pejorative terms in this debate when there's nothing wrong with being either.

An activist is a person who campaigns to bring about political or social change.

A lobbyist is a person who takes part in an organized attempt to influence legislators.

Of course, what is wrong is being a lobbyist and pretending to be impartial - as with the Science Media Centre.
 
Kalliope said:
Could someone let me in on what "Spiked" is all about? Have seen it popped up repeatedly in the Twitter debate about the Cochrane withdrawal.
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Might be better that you don't have to have it in your mind. I've been wading through the sewage of researching it since yesterday and it doesn't feel nice. It appears to be the most recent incarnation of a libertarian Marxist? group who want the right to say whatever offensive things they like without consequence. I'm simplifying it somewhat. It appears they are OK even with extremes like paedophilia to allow free speech.

There's also a group called Institute (Academy) of Ideas who are deeply involved by what I can tell. Run by Claire Fox, sister of Fiona Fox of the SMC.

This is my take on it.
 
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