Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

The long history of the BMJ's failings with CFS only really makes sense if their approach is shaped by bigotry.

That could play a role in another irritating thing about the BMJ submission to COPE:

Who is it that will misinterpret things? The people who keep making accurate criticisms of research?

Lets remember how the BMJ explained the results of PACE to its readers:

"Less than a third of patients were cured by either treatment (30% (44/148) after CBT and 28% (43/154) after graded exercise therapy)."

http://www.meassociation.org.uk/201...-coverage-of-the-pace-trial-23-february-2011/

Was that cure rate a bit of a misinterpretation?

Then Trish Groves followed this up with this sad tale from the Invest in ME Conference: "When I defended the PACE trial’s design and findings—albeit for a clearly defined, large subgroup of patients—and disclosed that I had a background in psychiatry, several people in the audience started shouting aggressively."

http://www.meassociation.org.uk/201...r-cfsme-british-medical-journal-22-june-2011/

Did they point out that you're not up to the job of interpreting research Trish? Was that a bit too aggressive for you?

 

I, like many, have the DVD of that presentation. Energy (and memory) permitting, I must try to revisit it. I can't remember witnessing any 'aggressive' shouting tbh. Is this another piece Crawley-esque over exaggeration I ponder?

 

Interesting. Maybe it would be good to get that on-line?

 

That's good, so they once again agree it is research.

 

Lol!

 

The video edited out the audience comments that day. I was there and Groves was a patronizing cow, who made remarks to sick people like "why does it matter to you", regarding the findings from the trial, simply because people had pointed out the obvious flaws in the Q and A session, which understandably caused gasps in the audience and a number of people spoke out from the audience in disgust.

Thats the actual truth of what happened, I think there's a similar summary from Dr Ian Gibson of IinME online somewhere, probably recorded on PR forum.

The fact she is still not speaking out over PACE after the protocol change and the reanalysis speaks volumes.

 

So maybe the reason wasn't quite because when she "disclosed that I had a background in psychiatry, several people in the audience started shouting aggressively".

 

I think it was to do with a number of things but solely related to her being a patronizing, prejudiced, ill informed, offensive, deluded cow.

 

I wonder if anyone at Invest in ME still has the recording of the Q&A?

 

I'm not sure the audio was good enough to pick up the audience remarks as they where not all on the mic but Groves remarks definitely should be.

Even the way she spoke to Kogelnik a researcher who was on the stage, when she earlier addressed him from the audience was like a schoolmaster talking down to a little boy.

 

"Dr Groves decried the "awful behaviour” – in this she referred to a couple of attendees in the audience (severely affected ME patients) who heckled her when she began to praise the PACE Trial."

http://www.investinme.org/Article-504 BMJ.htm

I was there and the audience behaved very well given the provocation. Even her body language was aggressive and her tone very disrespectful to patients.

 

I'm pretty sure when she tried to tweet out her deluded interpretation of events she got retweeted with the truth, not a single person backed up her presentation of events.

I doubt that has stopped her telling it her way in the subsequent years to many people she comes into contact with who were not there and didn't read any of the reposts to her claims.

 

Yes,I would be interested to see the video.

 

IinME record all their conferences I think this was from 2011. I'm also pretty certain Groves said in response to some of the patients that, "PACE investigators never said they were studying "CFS/ME".

She got a response from the audience of, "why did they get £5 million to do so then".

She pretty much fails to grasp that, "why should it matter that false conclusions drawn of recovery being extrapolated to a different patient group altogether at the cost of £5 million on the public purse and partly funded by the DWP", would cause disbelief in an audience full of patients.

 

This is IinME response to Groves BMJ review of the 2011 IinME conference.

http://www.investinme.org/Article-504 BMJ.htm

 

Interesting reading.

Dr Fiona Godlee [2]
“the quiet majority of patients must make sure that their reasonable voices are heard"

And now they are being heard (By CDC, NICE, Nature, Buzzfeed readers) and they are not saying quite what Dr Godlee seemed to expect.

 

It's so paternalistic isn't it? We have to behave in the way they decree to be heard. Actually the reverse has been true if anything. Once patients and advocates persuaded certain journalists of the authenticity of ME history/ politics/ fraudulent goings on the language used by those outside the Community has often times been more strident than anything anyone with ME has said..and it has been heard.

It's interesting that the ICO only found one example of 'heckling' in terms of the 'abuse' claims that were made around PACE, and yet the same word was used by Invest 5 years earlier to describe the reaction by some very ill patients to bizarre statements from Groves. What did she expect? And why did she subsequently exaggerate those exchanges? It's a well worn path isn't it? Frankly getting a bit boring now. I think today's little 'activity' will be to re-watch Groves if I can find the DVD.

 

From memory I think people have tried to watch this exchange before but for some reason found that the Q and A session at the end of the conference was not on the DVD.

 

I have just watched it. For info it's on the last disc of the 2011 Conference as part of the plenary session. I would say when she mentioned PACE she was collectively heckled ..but more in a 'flabbergasted unison' of people simultaneously remarking 'what on earth are you going on about..don't you know ..yada yada yada'. That isn't verbatim of anyone as there wasn't a distinguishable commentary on the DVD. It wasn't anything more than one might see on Question Time imo.