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

Seanko

Seanko

Senior Member
Messages
119
Location
Swindon, UK
Bob said:
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.
Click to expand...

Sonya is extremely hard working & conscientious. She does a lot of work behind the scenes & does not get the credit she deserves.
 
Seanko

Seanko

Senior Member
Messages
119
Location
Swindon, UK
SOC said:
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}


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?" o_O 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! :thumbsup: Three cheers for the organizers and participants! :balloons::balloons::balloons:
Click to expand...

Sonya made the right call. No point in being bogged down in the CBT/GET minefield.

Questions are about the presentations taking place today
 
U

user9876

Senior Member
Messages
4,556
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Bob said:
Dr Mark Edwards is getting £600,000 from the MRC for his study. There a tiny bit more info about it at the following link, but it's not much of an explanation:
https://www.facebook.com/actionform...72990583208/10153651102008209/?type=3&theater
Click to expand...

Thanks, Bob!

For those who can't see FB:

AfME on FB said:
Dr Mark Edwards has confirmed that the Medical Research Council has made a £600,000 contribution to the overall cost of his study to seek a unified mechanism for functional neurological symptoms.

Speaking at the UK CFS/M.E. Research Collaborative conference in Newcastle this afternoon, Dr Edwards, who is an Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, explained how he wants to test a new theory for how functional symptoms can arise from the brain.

He says: “We believe that fatigue in CFS may occur because of abnormal activation of a network of structures in the brain that are usually involved in signalling the presence of infection and inflammation in the body. These give rise to a common set of symptoms experienced by everyone (and indeed across species) when infection or inflammation occur (known as the "sickness response").

“This sickness response is usually short-lived, but we believe that the system could be abnormally activated in people with CFS in the absence of any ongoing infection or inflammation in the body.

Dr Edwards will test if particular aspects of brain function become more normal when people with functional symptoms go through successful treatment. He says: “This would be a key step in proving or disproving our theory for how functional symptoms can be produced by the brain, and will help with future treatment development.”
Click to expand...
 
Countrygirl

Countrygirl

Senior Member
Messages
5,632
Location
UK
Simon

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Odd, no mention of pre/post treatment testing in the talk, only pre/post an exercise test (which sounds similar to the ones the Lights' used in their gene expression work, ie based on age-predicted heart rate, not maximal).

On the face of it, this does sound like an impressive study for a few reasons:
1 Focusing on the core symptom of PEM, in combination with an exercise test (and before/after)
2 Using sick as well as healthy controls - and post typhoid vaccination too, which generates a stereotypical immune response
3 Taking blood samples to look at immune markers too

Oh, and probably more but a lot leaked out of my memory...

RAther small at 20 patients/20 healthy (the sick controls are using historical data). But interesting
 
C

cornwall13

Messages
40
Ive just done a bit of research into Dr Mark Edwards and found that he plays a big part into Functional Neurological Disorder. You may want to follow this link:

http://www.fndhope.org/functional-n...r-mark-edwards-responds-to-patient-questions/

Worringly, a section in the above link for functional neurological disorder patients.

"Why did this happen to me?

This is a big and complicated question. I think to start with it is important to address the issue of psychological factors again. Many of you will be aware of the term “conversion disorder”, which is one of the many words used to describe FND. It is based on a specific theory that functional symptoms are caused by a reaction to an underlying psychological stress/trauma which is somehow converted into physical symptoms. This theory is very widely known amongst doctors and is the commonest way the diagnosis is explained to patients."

Now this concerns me
 
Simon

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Wildcat said:
.
@Countrygirl wrote: This set of slides appears in the comment section. http://www.acpin.net/archive/Resources/ME - Functional Neurological Disorders.pdf


Worrying....
Click to expand...
This is a presentation by Dr Mark Edwards

I'm afrid it was a bit depressing in terms of how he seems to explain functional disorders
Bringing it together: Learning Style Favours The Development of False Beliefs

Jumping to Conclusions
Limited Ability to Reverse Learned Behaviours

Abnormal Illness Belief

Erroneous Perception of Motor and Sensory Experience
Impact of Attention/Consciousness
Click to expand...

I'm so disappointed, but maybe I'm misunderstanding something
 
Last edited:
Cheshire

Cheshire

Senior Member
Messages
1,129
cornwall13 said:
Ive just done a bit of research into Dr Mark Edwards and found that he plays a big part into Functional Neurological Disorder. You may want to follow this link:

http://www.fndhope.org/functional-n...r-mark-edwards-responds-to-patient-questions/

Worringly, a section in the above link for functional neurological disorder patients.

"Why did this happen to me?

This is a big and complicated question. I think to start with it is important to address the issue of psychological factors again. Many of you will be aware of the term “conversion disorder”, which is one of the many words used to describe FND. It is based on a specific theory that functional symptoms are caused by a reaction to an underlying psychological stress/trauma which is somehow converted into physical symptoms. This theory is very widely known amongst doctors and is the commonest way the diagnosis is explained to patients."

Now this concerns me
Click to expand...

I'm not a great fan of M. Edwards, to say the least, but he doesn't recognise the Freudian theory as valid, to be fair to him, here is the end of the quote "The problem is that when this theory is put to the test, it turns out to be relevant (possibly) for only a proportion of people with FND. Thus, many people with FND have no history of major emotional traumatic events, or major depression/anxiety, or at least not more than other people in the general population."
 
snowathlete

snowathlete

Senior Member
Messages
5,374
Location
UK
Countrygirl said:
This set of slides appears in the comment section. http://www.acpin.net/archive/Resources/ME - Functional Neurological Disorders.pdf
Click to expand...

disbelief.gif
 
You must log in or register to reply here.
Back