Open UK: Action for ME's list of current research projects recruiting.

It would be interesting to know what Action for ME's role in the DecodeME study is.
I sincerely hope they will not be having any say on selecting the patients for this.

I was twice thrown off a biomedical study by Liverpool University at the request of the Liverpool CFS clinic.
The patients were supplied (an MRC condition for receiving the grant) by the Liverpool CFS clinic (run by Dr Alistair Miller) and was only allowed back on because the university over-ruled them the second time. If I remember correctly they mentioned securing funding of their own from an alternative source other than the MRC/Liverpool CFS clinic.

I think we should keep a careful watch on who is and isn't being selected for the DecodeME study.

ETA: comments in bolding.
 
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"Neurophysiology of pain in M.E.
Action for M.E. took over the management of this study in July 2014, following the closure of the CFS Research Foundation, which had already secured and allocated funding for it.

  • Duration of study: January 2014 to October 2017
  • Led by: Prof Peter White and Dr Julius Bourke
  • Aims: To discover the physiological and chemical abnormalities underlying pain experienced by people with M.E.
In his report to Action for M.E.'s Research Panel, Dr Julius Bourke says:

"This is the first study, to the authors’ knowledge, that has provided clear and validated evidence of the presence of central sensitisation in both CFS and fibromyalgia. It is also the first study to compare fibromyalgia and chronic fatigue syndrome in this regard [...] The clinical relevance of central sensitisation in CFS and fibromyalgia is twofold – firstly in that QST are essentially bedside tests and can be performed in the clinic; the second is that it may have potential as a therapeutic drug target, defining a physiological abnormality that may be moderated by pharmacological correction."

https://www.actionforme.org.uk/rese...r-projects-and-phds/recently-funded-projects/

eta:
Bourke, J. H., R. M. Langford and P. D. White (2015). "The common link between
functional somatic syndromes may be central sensitisation."
Journal of Psychosomatic
Research;
http://www.sciencedirect.com/science/article/pii/S0022399915000057
.
 
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John Mac said:
I think we should keep a careful watch on who is and isn't being selected for the DecodeME study.
Click to expand...
From the FAQ on the DecodeME website, https://www.decodeme.org.uk/faqs/#the-science-research-faqs

What case definitions will be used (specifically, what about the Oxford and NICE criteria)?
We will apply a diagnostic algorithm (a very specific set of rules) to assess people according to well accepted diagnostic criteria: the Institute of Medicine 2015 or the 2003 Canadian Consensus criteria, but we will not be using the Oxford or NICE 2007 criteria. Given that people with M.E., M.E. organisations, and ME/CFS biomedical researchers all regard it as a defining symptom of the disease, Post-Exertional Malaise (PEM) will be a mandatory symptom.

We undertook an online survey and the majority of people supported this. These criteria were also agreed at the MRC/NIHR Workshop with researchers, patients and carers.
 
Andy said:
The paragraph below has been added to https://www.actionforme.org.uk/rese...h-we-fund/research-you-can-get-involved-with/

"Below we offer details of other research projects whose researchers have asked us to promote recruitment. Each one gives contact information for the person you will need to speak to for more information. There is also an extensive list of M.E./CFS studies that are currently recruiting on the Science for ME website."
Click to expand...

@Andy has there been any contact/communication between Science 4 ME and Action 4 ME in the last few days?

It would appear we are starting to co-ordinate activities, we repost their listings, they repost our listings, or is it all just coincidence?
 
John Mac said:
@Andy has there been any contact/communication between Science 4 ME and Action 4 ME in the last few days?

It would appear we are starting to co-ordinate activities, we repost their listings, they repost our listings, or is it all just coincidence?
Click to expand...
No.
 
Andy said:
No.
Click to expand...
Right, so it's all just coincidence then!
Or maybe they heard of the criticism they were receiving on here and posted the link to our list of biological studies as they felt a need to respond to it.
So a victory of sorts for ME patients, forcing a charity that supposedly represents ME patients to provide a link to ANOTHER website listing biological studies.
Maybe we should be criticising Action For ME even more if it's getting results like this.
 
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