UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

[Hutan]

I'd like to know why Zaher Nahle's presentation wasn't streamed. Well, he started and then the streaming went offline and there was the tweet from Sonya Chowdhury suggesting that someone didn't want the talk streamed:

For all #CMRC16 livestream virwers - we have been asked not to livestream this presentation but we will be back soon!

Then the post from Action for ME suggesting the break in streaming and absence of Zaher's talk was due to technical difficulties:

This is due to technical difficulties, but hopefully there will be no more of these - huge apologies for the problems this has caused with viewing.

So yeah, I'm a bit paranoid, no doubt. But it would be good to hear from Zaher as to why his talk was not streamed.

That last session of the day is worth watching I think. In it, several presenters rush through their preliminary results. I'm not sure what to make of the findings - I'd just woken up and wasn't mentally prepared for the rapid pace and I couldn't see the powerpoints well.

But I think I will watch it again to try to understand better. There were some potentially interesting findings - even the claimed negative findings eg re HPA axis.

There was supposed to be questions at the end but I don't think these were streamed.

 

[A.B.]

So yeah, I'm a bit paranoid, no doubt.

Didn't "technical difficulties" also happen last year when Lipkin came to England to give a talk?

 

[flybro]

Is this just another psychiatiric bio-bank trick, they pick the selection criterior which means the results will be AS THEY EVER ARE. no f'ing good!

 

[Sasha]

@Ben Howell - I kidnapped your above post and took it across to the MEGA thread - I think it would be good to keep all the discussion there were people will see it.

 

[Ben H]

@Ben Howell - I kidnapped your above post and took it across to the MEGA thread - I think it would be good to keep all the discussion there were people will see it.

@Sasha Have moved it into bigger thread. Please next time copy it all otherwise context is lost somewhat.

Thanks,


B

 

[Sasha]

@Sasha Have moved it into bigger thread. Please next time copy it all otherwise context is lost somewhat.

Thanks,


B

You're right, Ben, sorry - I've edited my post to indicate that some of it is missing and have directed people to yours - but should I edit the full post into mine?

 

[BurnA]

The whole thing should be boycotted, if the good guys are getting mixed up in it then they are making a mistake.

Summed up perfectly.

 

[Ben H]

You're right, Ben, sorry - I've edited my post to indicate that some of it is missing and have directed people to yours - but should I edit the full post into mine?

Hi Sasha,

Its fine as it is now, thanks.


B

 

[Glycon]

Oh, Zaher Nahle, you silly goose...

 

[Simon]

Sonya Chowdhury just presented an analysis of mecfs funding from major funders around the world, including the UK. Guess what? It was trivial, or zero, particularly compared with other conditions with a similar burden eg MS. The MRC are already reviewing the report and the other big UK funders, Wellcome Trust and NIHR are doing the same. What we need now is action.

The report was commmissioned by the CMRC to provide hard data on how much - or how little - funding goes to mecfs and how that compares with other diseases (disclosure: I commented on drafts of the report).

 

[Sasha]

I keep forgetting this is on!

Link: http://www.ustream.tv/channel/TwL4nrrtvZ2

@Simon - do you know where the agenda is?

 

[Simon]

All times GMT+1

 

[Gijs]

Most of these people and doctors are from the psychosomatic school. Only a lot of talking no action or money.

 

[TiredSam]

The lack of funding in the UK doesn't bother me any more. The less money given to that lot the better.

 

[Cheshire]

More good "biomedical research"...

https://twitter.com/i/web/status/781436577763459072

 

[worldbackwards]

The lack of funding in the UK doesn't bother me any more. The less money given to that lot the better.

I've long been of the opinion that campaigning for more money to be spent on treatment in this country is a very dangerous game under the current circumstances.

 

[Yogi]

I keep forgetting this is on!

Link: http://www.ustream.tv/channel/TwL4nrrtvZ2

@Simon - do you know where the agenda is?

So do I try and forget this is actually happening!

 

[AndyPR]

I saw it mentioned on another thread that Hugh Parry(?) claimed that a reason for lack of research was 'patient harassment of researchers' - can anybody confirm this?

 

[elliepeabody]

If anyone is interested Sonia Chowdhury told me via twitter that Dr Julius Bourke on the neurophysiology of pain wasn't streamed earlier this morning because the talk included sharing unpublished data. Summary to be included in Conference report out in a few weeks. Dr Bourke is a consultant psychiatrist who 'treats' CFS and is linked with QMUL.

 

[Cheshire]

I saw it mentioned on another thread that Hugh Parry(?) claimed that a reason for lack of research was 'patient harassment of researchers' - can anybody confirm this?

Someone indeed brought the 'angry patients' narrative in to explain why researchers were reluctant to engage in the field. But I can't tell who this person is (a male voice).