Cochrane ME/CFS GET review temporarily withdrawn

@ClareGerada: withdrawal decision sets a worrying precedent for scientific evidence being over-ridden by the opinions of activists. (Colin Blakemore). > sad we are entering an era of bullying scientists when lobby groups disagree with the results. https://uk.reuters.com/article/us-h...mid-patient-activist-complaints-idUKKCN1MR2PI

I still think Clare geradas tweet shocking. I unfortunately have missed the thread where she was challenged by another professional healthy. This whole way of dismissing patients as bullying Lobby groups is so out of order. Firstly I wish we were an effective lobby group , On this Cochrane issue we weren’t as a community lobbying enough imo, it’s just been a few amazing, persistent individuals.
Secondly I saw on the daily politics show yesterday Sarah vine say something about the trans ‘lobby” in a disparaging tone, as it is usually meant and used by the establishment and she was called up for being stigmatising of what is actually some of the most marginalised in society which I felt could apply to us


“They’re scared of the trans lobby “

“This very language of the trans lobby is iitself stigmatising and dehumanising and it’s totally over stating what is happening here, ...this is marginalised people trying to make their voices heard and get basic justice and you’re positioning it as if it’s some shadowy lobby that is bullying women .... “

Sorry slightly off topic but it just resonated. And not actually once in that tweet did she use the word “patients”, it was activists, lobby groups and bullying versus science, totally false presentation anyway . She might, to be fair have been ignorant of the facts and just responded to blakemores
Version and the journalists poor smc type language that I can’t imagine being applied to any other patient group .
 
I'm kinda taken aback there was an actual apology. Not something you see very often from this camp. Maybe if you start to realise you've spent all day tweeting nonesense about the defining work and sacrifice of an ME hero (and the ongoing heroic work of another one : @Tom Kindlon), you finally cross a line into something vaguely approaching humility.
 
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Matt (@DondochakkaB) said:
I'm kinda taken aback there was an actual apology. Not something you see very often from this camp. Maybe if you start to realise you've spent all day tweeting nonesense about the defining work and sacrifice of an ME hero (and the ongoing heroic work of another one : @Tom Kindlon), you finally cross a line into something vaguely approaching humility.
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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
 
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Cheshire said:
About the deleted tweet:

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It's not clear to whom she is apologising and for what.

That deleted tweet was addressed directly to me. She certainly hasn't apologised to me. All deleting her tweet did was remove my response to her from her twitter record too, so her followers won't see my protest.

I have just searched out the apology which didn't appear anywhere in my twitter feed as it wasn't addressed to me and didn't tag me. I have asked her to whom she was apologising and for what. I don't suppose she will answer me.

Edit: Don't know why I bothered really.
 
Snow Leopard said:
All the minus SD stuff is bullshit because the general population distribution is highly skewed with a prominent ceiling effect. The should be comparing to a population percentile. For the general population with demographics similar to the people in the PACE trial, a SF36 PF score of 60 is somewhere around the 10th percentile.
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What were their statisticians advising? This is pretty basic . Was their advice ignored? Or have we more incompetence from presumably MRC statisticians? Are they now involved in MAGENTA and FITNET? I'm not excusing the authors, it suited their purpose.
 
Clare Gerada's tweet: 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.
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Does she think she's god?

Unbelievable and dangerous tosh.
 
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.
 
chrisb said:
"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."
Click to expand...

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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