Cochrane ME/CFS GET review temporarily withdrawn

Sasha said:
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.
Click to expand...

Yes, noticeable in the local news here (East Anglia) "activist" is usually used positively; relating to battles against injustice be it health care inequalities, social care, community issues, in education, with the DWP etc.
 
Daisy said:
Yes, noticeable in the local news here (East Anglia) "activist" is usually used positively; relating to battles against injustice be it health care inequalities, social care, community issues, in education, with the DWP etc.
Click to expand...
For those it suits, they like to brand "activists" as being militants, so that when people read/hear "activist" they will think "militant".
 
I tweeted Sinéad Conneely‏... Not sure if I can get the Twittery stuff to work other than as copy and paste. :oops:

Sinéad Conneely‏ @phrenohead
Prof Wessely liked two of my tweets. Scoping out my profile and page? I’m hardly a big hitter. I see his wife’s incredibly awful attacks on patients have been deleted. I hope these have been screenshot by many.

1:13 PM - 20 Oct 2018

2 replies4 retweets30 likes


EIHIfuh4_normal.jpg
Tweet text






    1. New conversation

    2. Maggie W‏ @ladycatlover 11m11 minutes ago
      Replying to @phrenohead
      You might like to take a look at Science for ME, https://www.s4me.info/ (and it would be great if you considered joining), specifically this thread: https://www.s4me.info/threads/cochrane-me-cfs-get-review-temporarily-withdrawn.6225/ … (Folks there have screenshot some of the missing tweets!)

      1 reply0 retweets1 like

    3. Sinéad Conneely‏ @phrenohead 10m10 minutes ago
      Thanks Maggie!

      0 replies0 retweets1 like
 
Sasha said:
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.
Click to expand...

I think in the medical context it’s regarded as distasteful for supposedly ignorent patients to try to influence science or medicine. We should be in our place and let the learned decide, but ofcourse that has its own problems as clear with ME/CFS when the learned are biased and self serving
. That distaste isn’t there in politics. This might be why clare gerada was pro people marching to influence on Brexit, fake horrified at “the people” influencing cochrane,
We ourselves use the term “patient advocates” which is much more positive. Their use of language is deliberate and essentially puts us in the same. camp as dangerous, anti science, animal rights “activists”.

Clare Fox is awful. She often speaks rubbish whilst believing herself to be some sort of spokeswoman for the rational.
 
andypants said:
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.
Click to expand...

I will write a letter to the Reuters editor. Not sure how long it will take but will try to have it done quickly. I will put it here for feedback when I have a first draft.

The reporter and editor of this story need to provide evidence of their claims. We know there aren't any so they need to come clean with this. I have already addressed Kelland on this and will press her further on the angry mob she has irresponsibly set against us.

Right now we are being judged as guilty as charged of imagined crimes that are not even defined. This is clearly a well-coordinated campaign. It does not need much, just a send-off from Wessely capitalizing on years of alleged abuse and harassment that are taken at face value.

We have been accused, without evidence, of disturbing behavior of which total strangers declare us guilty and in need of censure. This has to end. Many articles on these fabricated claims have been published over the years and they never provided evidence because there isn't any.

In her Twitter thread, Dr Gerada repeated those claims and when asked to provide evidence she desisted. We have to repeat those demands. Those fabricated allegations are a smear campaign that have been published without any kind of fact-checking. They are going way too far with this and need to be challenged to either provide something, anything, or retract those claims.

If anyone wants to help, I will need to track down tweets that are accusing us of indeterminate crimes and slights. I will summarize to the Reuters editor that this inflammatory article has manufactured outrage over baseless accusations, for which neither the reporter nor the editor did any fact-checking. This is journalism malpractice and will not stand.


Barry said:
Ha! So we are a 'sect' now are we :rofl:. The BPS crowd are clearly calling in the reserves.

ETA: It's as if they consciously are gunning for Cochrane as well.
Click to expand...

They are indeed going after Cochrane. It's pretty obvious by now. The talking point is that this "caving" now makes Cochrane a trash journal. They are trying to intimidate Tovey into caving to them. Huge gamble that will have long-term repercussions on the organisation whichever way they go.

If they cave now, they will later face enormous credibility issues for having done so when sober analysis of the research shows it is indeed fatally flawed and that the concerns were indeed raised over many years by academics. If they don't cave they will continue being attacked as having lost all credibility.

They are backing Tovey in a corner when he by now understands the facts are indisputable. I think they are going too far with this but we will see if Cochrane makes an official statement. For now it's remarkable that all of this happened based entirely on preempting the story and shifting the narrative to fabricated claims of implied violence from fiercely aggressive activists.
 
@andypants and @rvallee
I have seen it had inpact on Facebook users too, a lot of prejudice coming to the surface. I was trying to stop/argue the worst misinterpretations, but got blocked and muted. This is on Norwegians FB pages. I don’t know if any of that could be used anywhere; but I have seen for example people saying that we all are narcissists.
 
obeat said:
Hopefully some of the press officers/ communication people from the charities are going to write as well?
Click to expand...

The SMC have clearly failed in their responsibilities as a charity here. Of course we can't know that without peering into internal discussions but leading a smear campaign as a distraction to legitimate concerns of flawed research is not in the public good. Wessely is clearly abusing his authority and the SMC need to be held accountable.
 
You must log in or register to reply here.
Back
Top Bottom