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

[eafw]

Anyway ... is anyone listening to Prof Perkins on at the moment, am wondering if she's going to get to a point, rather than just descriptions of some people's experience (and was the internet board she was quoting PR ?)

 

[SOC]

A thought about including BPS idiots researchers in the conference (and collaborative) ~~ How embarrassing is it going to become to stand up at a conference chock full of information about biological evidence in ME/CFS from high-powered international researchers and keep talking about your pokey little low-quality research claiming false illness beliefs and somaticism? Seriously, they look like.. well, idiots. They have to see that eventually. Maybe. Or at least everyone else, including the media will. Compare and contrast has it's benefits when evaluating different approaches. Even politicians and the media are not completely blind to that.

Perhaps the collaborative organizers are simply letting the BPS school shoot itself down. "Who wants to go to the MRC conference this year and look like an idiot? You? You?" {crickets}

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

This strikes me as odd. "We must not ask questions about Nazism and white supremacy because all viewpoints are equally valid. We don't want to be negative, now do we?" There is a limit to acceptance of differing viewpoints.

In some ways this reminds me of the Afghan government trying to include the Taliban in their political process in order to get past the violence and move forward. The hope was that by allowing them some say, they would begin to cooperate with everyone else. In case anybody didn't notice, it's not working. Some groups cannot be negotiated with. Their position is mutually exclusive to other positions. They cannot exist together.

The conference sounds like it's going great! Three cheers for the organizers and participants!

 

[Sasha]

Are you going to tomorrow's CMRC meeting, @Jonathan Edwards?

 

[eafw]

Someone called Mark Edwards talking now about an MRC neuroscience project. Sickness response, looking at brain activation when people given typhoid vaccine, network of structures (insula, intraceptive network)

These networks seem to be involved in inflammatory responses, they plan to look at this in CFS vs controls vs other conditions using brain scans.

 

[Bob]

I'll just point out that Sonya doesn't have to livesteam the conference or tweet anything about biomedical research. The fact that she is, and is tweeting opinions from the conference that ME is a medical illness etc, suggests a lack of bias to me. It's not easy to get everything perfect when tweeting live from a conference. I know that Action for ME get things badly wrong, but we are being given unbiased open access to this conference and I think credit is due.

 

[Bob]

This seems to be the new MRC funding announcement...

(Note, it's Dr Mark Edwards, not to be confused with Prof Jonathan Edwards.)

"Dr Mark Edwards confirmed @The_MRC funding for his new research into a unified mechanism for functional neurological symptoms #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653966037986213888

"Dr Edwards #CMRC2015 is @UCLIoN Senior Lecturer and Honorary Consultant Neurologist at @uclh National Hospital for Neurology & Neurosurgery"
https://twitter.com/SonyaChowdhury/status/653966617240563713

"Edwards: what happens 2 brain networks when ppl w #mecfs experience post exertional malaise? Study 20 #mecfs w 20 comtrols #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653968230386679812

"Edwards: how does the brain go wrong in neurological conditions like #mecfs #CMRC2015 need to understand more about mechanism"
https://twitter.com/SonyaChowdhury/status/653966806030372864

"Edwards: post-exertional malaise is something more than PE fatigue. Key symptom in #mecfs #cmrc2015"
https://twitter.com/SonyaChowdhury/status/653967276257996800

 

[Marco]

1. 
   

   [*]
   Sonya Chowdhury ‏@SonyaChowdhury 6 hrs6 hours ago
   General: cognitive functions problematic in #mecfs patients - role of sensory gating? #CMRC2015
   
   
   [*] Sonya Chowdhury ‏@SonyaChowdhury 6 hrs6 hours ago
   Whitney: also found fatigue score correlations with #mecfs patients - tentative thoughts now being outlined #CMRC2015
   [*]
   Sonya Chowdhury ‏@SonyaChowdhury 6 hrs6 hours ago
   General: increased grey matter found in #mecfs patients' brains; reduced in grey matter density in right PHG CMRC2015
   
   
   
   [*] Sonya Chowdhury ‏@SonyaChowdhury 6 hrs6 hours ago
   General: study has 22 #mecfs and 22 matched controls scanned in 3Tesla MRI scanner
   
   
   [*] Sonya Chowdhury ‏@SonyaChowdhury 6 hrs6 hours ago
   Whitney General sharing research study in brain study at Bristol Uni #CMRC2015

That looks interesting!

 

[Esther12]

This seems to be the new MRC funding announcement...

(Note, it's Dr Mark Edwards, not to be confused with Prof Jonathan Edwards.)

Not something I'm hugely excited by tbh.

 

[Sidereal]

"Dr Mark Edwards confirmed @The_MRC funding for his new research into a unified mechanism for functional neurological symptoms #CMRC2015"

Functional neurological symptoms is what used to be called hysteria.

 

[eafw]

I'll just point out that Sonya doesn't have to livesteam the conference or tweet anything about biomedical research. The fact that she is, and is tweeting opinions from the conference that ME is a medical illness etc, suggests a lack of bias to me. It's not easy to get everything perfect when tweeting live from a conference. I know that Action for ME get things badly wrong, but we are being given unbiased open access to this conference and I think credit is due.

Doesn't "have to" do it ??

She is the CEO of one the most high-profile ME charities in the UK. She and AfME are very involved in the CMRC, and this is a flagship event for them. Considering that **this is her job** I'd say that publicising the conference, organising the livestreaming of it and reporting on it (eg via twitter) are things that are firmly inside her remit.

 

[Wildcat]

.

????? Worrying.

Bristol Uni Researcher. Research associate of Dr Crawley. Sounds like cheerleading.


https://twitter.com/tomnorris1988/with_replies

Tom Norris ‏@tomnorris1988 31m31 minutes ago

@CrawleyEsther just stole the show at the CMRC conference..... #WhoeverDidTheAnalysisNeedsAPayRise @BristolCCAH #CMRC2015

.

 

[snowathlete]

Someone called Mark Edwards talking now about an MRC neuroscience project. Sickness response, looking at brain activation when people given typhoid vaccine, network of structures (insula, intraceptive network)

These networks seem to be involved in inflammatory responses, they plan to look at this in CFS vs controls vs other conditions using brain scans.

Intriguing. I wonder why typhoid vaccine has been singled out?

 

[Wildcat]

Can anyone clarify Julia Newton's stated justification for using Fukuda Criteria rather than Canadian? I've lost track of her talk.

 

[eafw]

Intriguing. I wonder why typhoid vaccine has been singled out?

because it's a live vaccine and provokes a reliably flu-like response in most people

 

[ukxmrv]

Can anyone clarify Julia Newton's stated justification for using Fukuda Criteria rather than Canadian? I've lost track of her talk.

Because it was the criteria for the clinic they were from?

 

[Wildcat]

.
What Julia said seemed like a jumbled answer. Why not use the Canadian criteria in research?

Its all very well talking about subtypes, but do they mean subtypes of the CCC (or ICC) or subtypes of Fukuda?

 

[eafw]

Prof Newton just made an interesting comment about IV injections of fluid helping with low plasma volume and heart function. More in her talk tomorrow, don't know if it is one that will be broadcast or not

 

[snowathlete]

There may be justifications for using Fukuda sometimes, but there ought to be a change toward better criteria, it's hard to see a justification for using them over and over again year after year and never upgrading to something better.

 

[Wildcat]

.
Sounded like an overblown attempt at justification of Fukuda

 

[Seanko]

Well done to Sonya Chowdhury & Action for ME for the tweeting and streaming