Discussion in 'ME/CFS research news' started by Trish, Oct 9, 2018.
Q & A session with David Tuller.
This was really cheering, and to me, a strong indication of how deep the change has gone at the CMRC.
Great to hear @dave30th invited to speak at the CMRC conference and to read David’s positive comments in his blog (http://www.virology.ws/2018/10/01/trial-by-error-the-cfs-me-research-collaborative-conference/). Just a bit disappointed that he didn’t mention circle jerk!
Although I share much of David’s optimism about the changes at the CMRC, I was not entirely sure what Stephen Holgate meant when he said: “we’ve stopped looking over our shoulders now... that’s done, finished... people need to sort out what needs to be sorted out but we’re looking forward...”
According to Chambers dictionary: “If you say that someone is looking over their shoulder, you mean that they feel anxious all the time about what someone may do to them.”
What was SH anxious about?
What did he think was going to be done to him? By whom?
And what what does “people need to sort out what people need to sort out” mean?
Who are these people? And what do they need to do?
I appreciate the need for diplomatic language on occasions but a little less obfuscation would be welcome.
Stephen Holgate talks about the “success story of the last 5 years” but before that he suggested that the CMRC research train had been sitting at the station for 5 years with no passengers on board. That sounds more like abject failure to me.
Does SH now accept that the CMRC has made a number of mistakes which caused stress to patients and resulted in years or inertia? Will he apologise? Does he agree with David Tuller and Chris Ponting that the PACE trial is bad science? Or does he agree with Fiona Watt, CEO of the MRC? Does he agree with David that patients have been unfairly smeared? Or does he agree with Simon Wessely and Esther Crawley, who he has previously defended and praised? Does he agree Jose Montoya who believes that ME patients are owed an apology for the way we have been mistreated? Or does he agree with Peter White?
The apparent turnaround at the CMRC is both surprising and welcome but there is still one hell of a mess that needs that needs to be cleared up, and it would be nice to see its chairman getting his hands dirty. Most ME patients are not only looking over our shoulders but having to deal with the very real harms that are being done to us by the BPS crowd and the medical establishment on a daily basis.
I agree @dave30th was very good.
Then there was that very odd perspective from Stephen Holgate for the last 4 minutes. All that nonsense about progress over the last 5 years, and no more looking back over shoulders was weird. And as for implying that this was the first conference with real biomedical research being talked about - what planet has he been living on? What about the IiME conferences for the last decade?
I really didn’t get “looking over his shoulder” for the last 5 years. Who was he looking for or at? The BPS lot. That explains why the CMRC has achieved nothing.
The bird may have flown from his shoulder but the excrement remains hanging around for quite a while.
Sounds quite wishy washy at the end - I think his train must have been stuck in a tunnel for a few years - everyone else has been getting on board with the biological story - it's only the old steam train enthusiasts that want to stay in the dark ages.
I think the reference to looking over the shoulder is in relation to Pace and he thinks we should move on from it and stop talking about it.
I expect SH means Ester Crawley his co-chair at CMRC til she was replaced. I doubt in reality there was much worry from SH but that could be me being not generous.
Whenever I'm about to listen to someone I like speak publicly I always get really nervous!
LOL at @dave30th singling out Fiona Watt at the CMRC.
LOL at the 'has anyone here felt harassed' bit too.
I wonder if that was the sort of thing they were expecting?
I realise this was all impromptu, but a bit of loose language on the 'recovered at baseline' at one point though, with it not made clear it was not for all aspects of the recovery criteria. Tut-tut!
Holgate sounds like he might be on the way out. He trusted some untrustworthy people, and it seems that meant that he hadn't been able to achieve much. If he does go, I wonder if he'd then speak out about the problems caused by PACE/Wessely/etc? I wonder if he even feels that they bear responsibility for the dire state we're in? Maybe if he feels things still aren't moving foward with the MRC, etc, he'd want to speak out before throwing in the towel?
A bit later David did clarify by talking about outcome thresholds (plural) at baseline
'if 13% of patients meet an outcome threshold at baseline and you do not reveal that, that is research misconduct....'
I thought his saying that if they haven't achieved anything in the next 5 years he would resign was pathetic. He's messed it up badly for the last 5 and more years. Surely a public apology and resignation now would be better. If he had the courage to admit in public he'd been part of the problem with his support for PACE and Crawley all this time, he might actually do some good.
I think 'looking over our shoulders' was a reference to feeling controversial and at odds with patients. Which makes me wonder, 'Why the hell didn't you realise that if you're constantly looking over your shoulder you might be doing something wrong?'
I think that Holgate could still make useful contributions to the CMRC so don't think I want him to resign, but him being open about past mistakes is probably the most valuable thing he could do right now.
You may be right. Can you suggest what useful contribution he might make? I can't think of any.
He is an Establishment figure, and you see him turning up in various places, eg the recent air pollution stuff: https://www.theguardian.com/lifeand...-at-rush-hour-six-ways-to-avoid-air-pollution
Generally, the UK establishment figures with any interest in CFS stuff are against us, so having someone in those networks who is aware of the problems with how CFS has been treated should be of some value.... particularly is he's willing to start being more open about these problems.
Yes, I see that as just as likely. With his opaque communicating it's hard to be sure which side of the issue he was referring. But the fact it's resolved now with EC gone then would make it disingenuous too.
@dave30th you make me so happy every time you speak. I just start smiling at the sound of your voice, and it's the same when I start reading anything you've written. You and your work are an absolute tonic & I am just so so glad you're on our side. I actually get a lump in my throat sometimes because you renew my hope
"They are the climate change deniers"
"Pace is a major case of scientific misconduct which needs to be investigated".
SH's 'over the shoulder' comment made me feel really uncomfortable, it's a bit creepy & manipulative iyam. It feels like he's either perpetuating the 'harassment from patients' meme, or trying to insinuate himself as if he's been on our side all along & is a partial victim alongside us, when in reality he's been enabling the BPSers all this time.
For God sake Stephen when you say you've 'been in this 5yrs' .... ahh diddums... we've been in it decades!
IiME has been in it for decades, the patients have been saying the same things for decades!
Perhaps i am being uncharitable, he seems like a pleasant chap who cares about sick people, but I still feel angry/frustrated with him....
'looking over the shoulder' - yes, there has been aggro, yes there has been anger, yes there has been ridicule, derision & abuse, but it's us that's suffered as a result of that, not, as far as I'm aware, you...
& our suffering is entirely down to the people YOU have been in bed with Sir!
If he'd had the attitude he seems to indicate he has now, at the start, (or perhaps if he did have that attitude at the start & had had the bottle/ability to stand up to Crawley et al), either way we'd be a darn sight further on.
How dare he imply that he's been nervous... he (afaics) has been part of the problem. We might be moving forward and I'm glad he's with us, I'm glad anyone is with us if they genuinely are, but any forward movement feels like it in spite of him & so many others, not because of.
But will be happy to find myself mistaken & apologise if I'm being unfair & there are things I'm not aware of.
But... mark my words, when the science proves a biological cause & perpetuating factors in the future, the Crawleys of this world will all be getting in on the 'these people have been terribly wronged' publicity. "no one wanted to take these patients seriously, nobody would believe these poor children were really sick" "it's been so hard fighting alongside this maligned patient group" etc etc etc
Sorry i'm going off topic but for me that 'over the shoulder' comment was a taste of things to come. I hope i'm wrong.
I think David said that CP asked him to speak unplanned so I’m guessing for some it might have been a shock, including perhaps SH
SH to me was responding to David’s speech about pace and the patient harassment narrative (raised by Hugh parry of MRC a couple of years ago as reason why field not progressing and central to the SMC CFS narrative) and basically saying let’s stop “going on about that” and be positive, look forward etc which is classic “sweep the uncomfortable under the carpet” not addressing it or apologising, but in a vague way because we can’t speak plainly can we. Holgate himself two years ago was part of ECs CBT can cure kids FITNET media promotion and I’ve never seen, as mentioned above, him doing anything other than sit in the fence or be unhelpfully inclusive of the BPS lot. He might also have been meaning bps stuff dominating was finished, it’s now biomedical research, it’s so implied it’s difficult to say but if we can’t even say BPS stuff plainly what is that saying ... plus it’s still harming patients and the UK research effort imo.
The five years thing reminds me of businesses who fail or corrupt , go deliberately backrupt then reinvent themselves to pretend they’re shiny clean and new. I’m drawing comparison only in that Its convenient to rebrand and pretend it’s all quite new because then you can get away with more. CMRC is very similar to predecessor ME expert Group and the charities didn’t want that disbanded it just was, by who ... and then the new shiney CMRC Is formed instead and we are told it has to be a broad church, why? and it’s as if they’re just starting whereas in fact the MRC had its first CFS research priorities group in 2003, a research conference with AFME 2006, me expert group formed 2008, a research priorities workshop 2009 which then had two years of meetings on priorities (sound familiar?) then the CMRC 2012 or 13. To say I’ve had five years as SH did, to me is disingenuous
Holgate has never sounded shiftier in my opinion.
The looking over his shoulder part is to try and shut up patients who complain about the previous mistakes he has been involved in and supported.
I think he was ruffled by David Tuller's talk and this may be what the "looking over my shoulder" dig was about. It's an insinuation that we patients who want to talk about PACE or Crawley are stuck in the past.
Holgate is trying to jump on the wave of current research coming mainly from the USA and trying to pretend that this was always the direction he wanted to go in. My BS detector was going ding, ding.
Separate names with a comma.