United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

It's like Christmas!

  • build on the momentum created by the Institute of Medicine in the US by securing a high-level report on the illness and research in the UK, and use this to seek greater investment from policy and decision-makers
  • establish a CFS/ME Platform, similar to that of the Dementias UK Platform, to expedite and consolidate biomedical CFS/ME research.
Yeeeeeeeeeeeeeeeeeeeessssssssssssssssssssssssssss!!!!!!!!!!! :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons:
 
Chris Ponting is good value. Maybe things are changing. But I have no faith in the sort of montage of funding names at the top. It makes it look like a sort of political black grouse lek with everyone pretending to make money available when they actually want it for themselves. The CMRC would have done better just to be a talking shop, not a wheeling and dealing outfit. Still, if anyone can turn this circus around it will be Ponting. He might start by bringing in the people who have actually been doing some science who have so far been excluded.
 
Trish said:
''ME/CFS Epidemiology and Genomics Alliance'' - providing the patient representation. I've just realised that must be the MEGA patient advisory group (PAG).
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There were some good people on that, IIRC, who were critical of the bad things in MEGA. This whole thing makes me wonder if their arrival on the scene and what they said helped change things.

If so, hats off to them! :trophy@
 
According to the new charter a new chair and deputy chair will be elected after five years.
So Crawley's gone. But does this mean from the start of the new charter? So Holgate is safe as Chair for five years?
Personally, given his involvement with Wessely, I'd prefer a completely clean start and Holgate replaced as Chair.
 
I've sent an email to Arthritis Research UK, asking for a statement re: their involvement.

Joanna Elson (Newcastle University) - http://www.ncl.ac.uk/ion/staff/profile/joannaelson.html#background - Mitochondria
Colin Smith (Brighton University) - https://www.brighton.ac.uk/staff/colin-smith.aspx - Genomics
Neil Harrison (Sussex University) - http://www.sussex.ac.uk/profiles/230391 - Neuropsychiatry
Patrick Chinnery (Oxford University) - http://www.neuroscience.cam.ac.uk/directory/profile.php?pfc25 - "I am interested in the genetic basis of neurological disorders, and particularly mitochondrial diseases." [I think this must be the right person but he's not from Oxford.]
 
Andy said:
Patrick Chinnery (Oxford University) - http://www.neuroscience.cam.ac.uk/directory/profile.php?pfc25 - "I am interested in the genetic basis of neurological disorders, and particularly mitochondrial diseases." [I think this must be the right person but he's not from Oxford.]
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Well, Cambridge :)

> Prof Chinnery: My laboratory research programme is based in the MRC Mitochondrial Biology Unit, and studies the mechanisms of mitochondrial disease in patients and model systems. Our aim is to understand why specific cell types are so vulnerable in mitochondrial diseases.

I have an active genomics programme identifying new disease genes and mechanisms in neurological disorders.

I also have an active clinical research programme developing new treatments for mitochondrial disorders.
 
Excellent. A step in the right direction has been taken.

I'm still cautious because words are cheap and the psychosomatic ideology has historically not been challenged enough. As we know, they have a tendency to prematurely draw conclusions that the illness is caused by psychosocial factors. A lot of psychosomatic research could be done under the pretext of biological investigation.
 
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Sasha said:
After completing a five-year term of office as Deputy Chair, Prof Esther Crawley (Bristol University) will be standing down from this position and, due to a change in her role at the university, from the Board itself. Chair, Prof Stephen Holgate stated “We are immensely grateful to the hard work and commitment that Esther has provided to the CMRC and wish her the very best in her new role at Bristol University.”
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I am wondering if she has taken up a position as head of research and development or clinical trials? Or even Dean?
 
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