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

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Here, have some brain soap. :gift: It doesn't work, but at least you can feel like you're making an effort.
ha ha - like the CBT I had for my 'false illness beliefs' but maybe if I imagine I have brain soap cleaning my brain it will really work and the knowledge from the slides will be washed away - ahhhhhh - nice.
 

MEMum

Senior Member
Messages
440
I only jotted down a few notes from Mark Edwards talk yesterday near the beginning.
I thought he said that his research was in collaboration with others, including Neil Harrison (Sussex) and that they were looking at the mechanisms in the brain that could be going wrong in PEM.
To elicit "sickness behavior" in healthy people, they gave typhoid vaccine (live). Scans showed that this caused an activation of the insula in the brain. Also the degree of insula activation was proportional to the level of "sickness" symptoms. Sorry I didn't hear/note the type of scanning used.
My understanding is that they will now look for possible similarities in PWME.
Neil Harrison spoke at IiME in May. He's newish to ME, but seemed very biomedically/neurologically based.

I only briefly looked at the "Pink Elephant" slides briefly as the psycho/socio ... does my head in, and I'm not trying to defend him.
I just think we should maybe understand a bit more about the project, before he gets chucked out with the bathwater.
Or I might just have misheard him. His talk was before some kind person said there was a volume control on the live stream.
 

SOC

Senior Member
Messages
7,849
So no PEM required. Fukuda pulls in a lot of chronic fatigue for other reasons if patients are not actually checked and treated for MDD, hypothyroid, dysautonomia, and other possible reasons for chronic fatigue. When Fukuda is properly applied, I believe all those exclusions must be made, patients treated for possible confounding conditions, and then a CFS diagnosis is only given if the symptoms persist despite those treatments. I sincerely doubt Prof Newton actually did those exclusions, since few other researchers do. They all use the sloppiest application of Fukuda on mild patients and claim they're studying ME/CFS.
 

Keith Geraghty

Senior Member
Messages
491
An uplifting quote from Montoya yesterday was when he said 'we do include psychiatrists in our team - they tell us that ouR findings are not psychological' -- brilliant, im keeping that one in my file

Davey-smith is very good, but perhaps such a big picture thinker that hard to come back to CFS - but I think his key message will be most micro studies have such bias, confounding, and error that findings are fairly weak to usefless, we will need large scale data across lots of variables on ME
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Terrible sound quality all the way through today - could hardly hear half of what people were saying and unfortunately if you hear the first half of every sentence and not the second (which was essentially kept happening as the sound kept fading in and out every few sessions through distortion and muffling) then you understand nothing.

What a waste!
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Poor sound quality but a huge wake up call by George Davey Smith for much bigger, sharper studies. Holgate now
Picking up on the theme, saying we need to collaborate and pool resources and more funds
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Research style also fosters false beliefs. The whole false belief research agenda is flawed, right from the fundamental principles they use to do research.

The false illness belief concept is directly countered by the extreme physiology. It remains to be explained. They cannot.

It also does not fit patient responses, thoughts, behaviour, at least in my case and every patient I have discussed these issues with.

Now the brain can rewire itself after severe trauma (e.g. PTSD) but this is physiology not thoughts or beliefs.

Just for the record, I think the ONLY thought disorder is false beliefs, but that is a normal human problem not a medical one, and accounts for the false ideas in psychobabble.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Next conference Oct 12 & 13 in Southampton.

Prof H said they want to get a spring meeting of major players interested in getting the "Grand Challenge" going and that the MRC (and Wellcome?) had been at the conference and were very positive and that this time next year he wanted to be telling us that it was underway.