UK Research Collaborative Conference in Newcastle: 13th - 14th October

[Bob]

They're purposely not showing the slides to avoid showing any embargoed study results. Maybe that's how they got permission to livestream the whole morning.

 

[Bob]

Here's a google result from that hashtag, not sure if it's the best way to do it:

https://twitter.com/search?q=#cmrc2015

Yes, that link is good, sasha.

If you click on 'live' at the top, then you get all tweets rather than just highlights.

 

[K22]

Who was that saying that we also need a big Valcyte study in the UK? Was that Holgate?

What I like about Holgate (if that's him - I'm rubbish at recognising faces) is that he keeps coming up with "what we should do next" ideas and immediately names the MRC funding mechanism that will get it done.

Very lucky to have someone who understands the system and is thinking big. I bet that will be very attractive to the MRC - these big plans.

I wonder what the funding announcement will be, later on today...

Holgate has been involved since 2007 or 2009. If we do finally see the talk, including big data studies & "omics" translated into serious MRC funding it would be about time.

 

[Sean]

They're purposely not showing the slides to avoid showing any embargoed study results. Maybe that's how they got permission to livestream the whole morning.

Ah. Thanks for that info.

 

[Bob]

Katie Druce:
"Prof Holgate: Belief that ME/CFS is purely psychological has produced an impasse between patients and healthcare professionals #CMRC2015"
https://twitter.com/katie_druce/status/653865772574490624

 

[Sasha]

They're purposely not showing the slides to avoid showing any embargoed study results. Maybe that's how they got permission to livestream the whole morning.

The technical person said that they'd tried out pointing the camera at the slides before they started but you couldn't see them because of the lighting. They didn't mention embargoes (and I don't think anything that Prof. Holgate said would have been embargoed).

 

[Bob]

Action for ME:
"Revised programme for this afternoon #CMRC2015 Livestream starts again at 4.30pm GMT"
https://twitter.com/actionforme/status/653924883877994496

 

[Bob]

The technical person said that they'd tried out pointing the camera at the slides before they started but you couldn't see them because of the lighting. They didn't mention embargoes (and I don't think anything that Prof. Holgate said would have been embargoed).

OK, I'm just repeating what Sonya said re showing slides:
"Sorry, some have unpublished data so we've been asked not to."
https://twitter.com/SonyaChowdhury/status/653893934083633152

 

[Bob]

Unfortunate that her psych bias is coming through very strongly,eg trying to claim that Prof Montoya was passionate about including psychiatrists (not what he said) and that she'll put questions to the panel - but not about PACE because we musn't be "negative" about ANY research

I don't think she is displaying any bias at all, let alone 'very strongly'. She is tweeting rapidly, trying to relay what is being said in real time, while organising a live stream and responding to tweets and questions. Not an easy task. Nearly all of her tweets are about biomedical research. I wonder what bias the following tweet portrays...

Montoya: #MECFS is not a psychological illness but abnormalities in the brain
https://twitter.com/SonyaChowdhury/status/653872841587298304

 

[Wildcat]

.

Tweets:
Sonya Chowdhury ‏@SonyaChowdhury

"I have always thought and still do that we can find a single infectious trigger and perpetuator", says Prof Jose Montoya. #CMRC2015

[I copied this tweet earlier from Sonia Chowdhury's tweets, but it now seems to have disappeared, or I can't find it amongst all the tweets. Its an extraordinary statement from Jose Montoya. I hope he will elaborate at some stage]



Sonya Chowdhury ‏@SonyaChowdhury 2h2 hours ago

Montoya: evidence over last 33 years that #mecfs is often triggered by infection leading to a neuro-inflammatory process #CMRC2015



.

 

[Bob]

Who was that saying that we also need a big Valcyte study in the UK? Was that Holgate?

Holgate definitely said to Montoya that the MRC should be paying to replicate one of his research studies but I missed what they were taking about. They mentioned Roche at the same time and Holgate said that Roche weren't likely to fund a study because of the patent expiring and that's a situation where the we should expect the MRC to step in. Was that Valcyte they were discussing?

 

[Bob]

Re discussion about PACE question being negative...

"@SonyaChowdhury question not meant to be negative but reality is that we need a paradigmshift for so many pts waiting for so long for cure."

Sonya Chowdhury:
"I don't disagree. Fed need a paradigm shift and Holgate and Montoya said the same"
https://twitter.com/SonyaChowdhury/status/653919132782604289

 

[Sasha]

Holgate definitely said to Montoya that the MRC should be paying to replicate one of his research studies but I missed what they were taking about. They mentioned Roche at the same time and Holgate said that Roche weren't likely to fund a study because of the patent expiring and that's a situation where the we should expect the MRC to step in. Was that Valcyte they were discussing?

I thought it was Valcyte (also called valganciclovir).

 

[Sasha]

Re discussion about PACE question being negative...
"@SonyaChowdhury question not meant to be negative but reality is that we need a paradigmshift for so many pts waiting for so long for cure."
Sonya Chowdhury:
"I don't disagree. Fed need a paradigm shift and Holgate and Montoya said the same"
https://twitter.com/SonyaChowdhury/status/653919132782604289

Glad to hear that response.

 

[Wildcat]

.
Are there any questions patients have relating to PACE that would not be construed as "negative"? Should PACE be the elephant in the research conference room?

.

 

[Bob]

A selection of interesting earlier tweets by Sonya...

Note that Holgate specifically states that ME/CFS is a medical illness, and endorses the IOM report. So there's no sitting on the fence or pandering to the psych lobby by him here...

"Holgate: IOM report significant. We are dealing with a complex mix of illnesses. This report crystallises #mecfs as a medical illness"
https://twitter.com/SonyaChowdhury/status/653865778098405376

"Audience hearing Holgate introduce the IOM report - this is the view of the CMRC too"
https://twitter.com/SonyaChowdhury/status/653866055866183680

"Holgate: NIH pathways to prevention report being intro now. Innovative biomedical research needed - none of us would disagree with this need"
https://twitter.com/SonyaChowdhury/status/653866647942483968
...

"Montoya: "I have a wish and a dream that medical & research societies in US apologise to #MECFS patients""
https://twitter.com/SonyaChowdhury/status/653870049091014656
...

"Montoya: measuring cytokines every day and follow activity #MECFS - leptin was the prominent one #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653880431675371520

"Montoya: measured 51 cytokines in 200 cases and 400 controls #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653880935306371072

"Montoya: sharing unpublished data #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653881962504044545
...

"Montoya: valganciclovir study - significant response in terms of physical function for #MECFS participants #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653877996567269377

"Montoya: duration of illness is important for use of valganciclovir #CMRC2015 led us to do a double blind RCT study"
https://twitter.com/SonyaChowdhury/status/653878283554172928

"Montoya: vaglancicovir - microglia inhibitor proven in mice. We believe it helps a group of patients by immuno-modulation"
https://twitter.com/SonyaChowdhury/status/653879310059708416

 

[Jonathan Edwards]

This UK CMRC "Grand Challenge" thing that Prof Holgate mentioned sounded interesting - he was talking about setting up a workshop to bring the relevant stakeholders (including charities) together to formulate an action plan for "pan-UK approach to subphenotype, collect samples, integrate data, pathway analyses" (from SC's tweet - I didn't make notes).

The potential irony is that today I was at the inaugural meeting of EMERG (European ME Research Group), which was just such a workshop, except at a pan-European level. Moreover the UK side is spearheaded by the Biobank group set up with the help of AfME - and their representative was in London, not Newcastle!! IiME still seem to be a little ahead in this game. But I very much hope that in the longer term everyone will be pulling in the same direction.

I am not in a position to report anything specific back from EMERG but no doubt IiME will make an announcement. It was a very practical businesslike meeting focussing on specifics of cross-European collaboration. There was consensus on pretty much everything and there were no prima donnas. This may go down as a rather peculiar day in the history of ME research but I think entirely positive - different routes need to be worked through. Bigger funding organisations are being drawn in to the discussion through such different routes and that must be good.

 

[Sasha]

They're back!

 

[eafw]

I don't think she is displaying any bias at all, let alone 'very strongly'. She is tweeting rapidly, trying to relay what is being said in real time, while organising a live stream and responding to tweets and questions. Not an easy task. Nearly all of her tweets are about biomedical research. I wonder what bias the following tweet portrays...

We obviously have very different interpretations. For me when someone explicity says they will not put forward any questions about PACE (because that would be negative), a vague follow up statement about paradigm shifts doesn't carry that much credibility in terms of trying to brush the first away.

We're really not talking typos here, it's a refusal to confront something that has been a major block in terms of bio research on our condition. That most of the rest her tweets are about bio research is because that's what's mostly being talked about at this conference !

But that's back to my original point too, she still put the psych spin on it when she had chance, it's one thing reporting what others say, another giving her opinion eg also claiming Montoya was passionate about including psychs in the research !!

 

[ukxmrv]

But that's back to my original point too, she still put the psych spin on it when she had chance, it's one thing reporting what others say, another giving her opinion eg also claiming Montoya was passionate about including psychs in the research !!

It's not a "mistake" that anyone who cares or thinks about the implication of the message would make