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

[Sasha]

Are recordings of these talks going to be available online later? I missed Holgate's opening talk, and would really like to hear it.

I don't know - Holgate's talk was very interesting.

Sonya Chowdhury tweeted it:

https://twitter.com/SonyaChowdhury/with_replies

 

[eafw]

Aaaaaaannndd the picture is back! A little jerky, but good enough to see static slides.

I don't understand why they don't point the camera at the slides rather than the speaker, it's too jerky to watch and out of synch with the audio anyway.

 

[Sean]

Yes, it would help if they showed the slides, and Mr Finkelmeyer tends to be very very quiet.

 

[eafw]

Yes, it would help if they showed the slides, and Mr Finkelmeyer tends to be very very quiet.

It's a failure on the part of the sound tech who should have just gone up to the stage and moved the microphone (or even better to ask speakers beforehand to do quick sound checks and have everything in place for when they start)

 

[Sasha]

Full programme here.

Pleased to be getting more livestreamed than we'd expected.

Big thumbs up to Sonya Chowdhury for tweeting!

 

[eafw]

Full programme here.

Pleased to be getting more livestreamed than we'd expected.

Big thumbs up to Sonya Chowdhury for tweeting!

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

 

[Sasha]

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)

I couldn't hear very well what he said (a combo of sound quality and his accent) - so he didn't say that?

and that she'll put questions to the panel - but not about PACE because we musn't be "negative" about ANY research

Did she say that? I haven't read all her tweets.

 

[Sasha]

Oh! They've gone off-air.

Someone posted a comment asking what we could expect to see livestreamed this afternoon (we already know we'll be seeing the MRC-funded studies' session at 4:30 pm).

 

[Cheshire]

I couldn't hear very well what he said (a combo of sound quality and his accent) - so he didn't say that?

Dr Montoya said he even had a psychiatrist in his team, and that he clearly stated there was no way this illness could be psychiatric.

 

[eafw]

I couldn't hear very well what he said (a combo of sound quality and his accent) - so he didn't say that?
Did she say that? I haven't read all her tweets.

His comment about inclusivity was in the context of patient populations, young, severe etc and separately he said that they included psychs in their team but only so they could assess patients and confirm that this was NOT a mental health problem that was being dealt with. Her tweets in this convo misrepresent that:

Then

 

[Sasha]

that she'll put questions to the panel - but not about PACE because we musn't be "negative" about ANY research

Oh... I see what you mean...

@SonyaChowdhury how do we move past the PACE trial, which has held back progress in care for patients and research so much over past decade?

Happy to ask questions as long as they r not negative towards specific research regardless of what our views might b

I don't think that's a sound position. If one has a negative view of the PACE trial (or any other research) that's well-founded in the design or data, I don't see any problem at all with reflecting that negative view in a sensible question at a scientific conference. People have a lot of well-justified questions about PACE, and science moves forward partly by critiquing stuff that's poorly done or misleadingly spun.

But perhaps a well-phrased question might make it through, as long as it's relevant to proceedings.

I hope Sonya will reconsider the position that she's taken there.

 

[Sasha]

His comment about inclusivity was in the context of patient populations, young, severe etc and separately he said that they included psychs in their team but only so they could assess patients and confirm that this was NOT a mental health problem that was being dealt with. Her tweets in this convo misrepresent that:

Then I agree - it would have been better if she'd made the context clear, given the history of the nature of psychiatric involvement in the UK.

It seems to be possible to tweet replies to her, though, to things that people disagree with. Don't know if anyone wants to tweet a clarification of what Dr Montoya meant?

 

[Sasha]

@Jonathan Edwards, are you at the conference?

 

[Sasha]

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).

 

[Sasha]

The person doing the livestreaming says they'll resume at 4:30 pm (that's the MRC session).

 

[Sasha]

The Twitter hashtag for the conference is this, apparently:

‪#‎cmrc2015‬

Does that mean we can see other people's tweets about it?

@Bob, you're the expert. How can we see other people's stuff?

 

[Sasha]

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

 

[Simon]

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).

This is hugely amibitous, and will be very expensive. And is probably just what mecfs needs. The idea is to get a big cohort of patients and collect and analyse a mass of data inclluding genes, gene expression, proteins, immune types and metabolism. The hope is that such a huge and widespread dataset will reveal true subgroups amongst patients, each with separate causal pathways - as a way of homing in on causes and then treatments.

He said the same approach in asthma led to this 'single' disease being divided into different subgroups, each potentially responding to different treatments. Here's details of a similar approach with bowel cancer
CRUK Oxford Centre | £5 Million Stratified Medicine Programme Launched to Personalise Care For Bowel Cancer Patients

I blogged about the idea here
A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research

To have any hope of identifying many different diseases (or causative pathways) within the umbrella definition, a lot of patients are needed; and there are early plans for a study involving a 5,000-strong cohort of patients [this has all gone very quiet!!]. The idea is to explore everything: phenotypes, genotypes, gene expression, cells, cytokines, metabolites and more. Some of these individual features have been researched before, but not all together: and never on such a scale. High quality scientists would then have to be involved to look at applying the new technologies to the data generated from patients. But there has to be a multi-disciplinary approach, and nurses, for example, would be just as important as mathematicians in this operation.

New computer technology would be used to probe the mass of data, with the aim of finding distinct groups of patients who ‘cluster’ together with similar features, which should make it easier to home in on different causal molecular pathways in different types of patients. It is identifiying causal pathways that will lead to a much deeper understanding of ME/CFS and, hopefully, provide targets for drug therapy too.

The Wellcome Trust have recently joined the CMRC and this might be just the kind of study to pique their interest, and hopefully open their coffers.

 

[Sasha]

Katie Druce, a post-doc research assistant in epidemiology, is also tweeting from the conference:

https://twitter.com/katie_druce

 

[Sasha]

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...