IiME get it all right, as usual!
1.5m is not enough to make any difference anyway, especially if it is to be watered down by dividing it between different disciplines, such as 'fatigue' and 'sleep'.
(I can't see how a sleep expert is going to cure us either!)
The research investment needs to be multiple millions of pounds each year if it's going to make any difference.
And like IiME say, it needs to be channeled into virology and immunology, and also genetics in my opinion.
Some interesting extracts from a recent MRC notice (I've underlined some interesting text):
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) – Cross-board highlight notice
This highlight notice invites the submission of high-quality proposals in priority areas within CFS/ME research, to all MRC Research Boards.
Immune dysregulation: There is evidence for a disturbance in innate and adaptive immunity in CFS/ME including alterations in cytokine profile, absolute and functional alterations in T cells and NK cells and occurrence of autoantibodies and allergic reactions that may explain some of the manifestations such as fatigue and flu-like symptoms. A number of infectious and environmental exposures have been associated as triggering these changes.
Neuropathology:There is now preliminary evidence supporting the view that inflammatory mechanisms in the brain and spinal cord may underlie the pathophysiology of some severe disease CFS/ME phenotypes. Biobanks are now becoming available and create a unique opportunity for interrogation.
I think so. Coincidently, the 1st announcement occurred very shortly before the publication of White et al (2011), while the 2nd announcement occurred very shortly before the publication of McCrone et al (2012). Perhaps there are other factors behind the scenes, and it is said that correlation is not causation, but the disappointing PACE Trial results do clearly correlate with a historical shift of focus at the MRC.
Ironically, the latest MRC notice also seems to be implying evidence for the existence of MYALGIC ENCEPHALOMYELITIS: muscle pain and "inflammatory mechanisms in the brain and spinal cord".
I think when these additional 'cross border' proposals were sought they were hoping it would add more to those already funded. There were 'gaps' in the applications received. If you recall, originally it was quite a wide brief (not as wide or encompassing as the NIH one but wide enough), and whilst oversubscribed, I think it left certain areas bereft.
Still it was very encouraging I thought to hear that more money might be available and for these directions specifically. As ever though it depends on scientists making a decent application. No application, no chance of the research. It's a shame it has to be thus but then these kinds of invitations to 'bid' are the norm these days.
Quite so! I noticed that too and I think it is remarkable and very important. This is a statement from the MRC that "there is now preliminary evidence supporting the view..." that the name Myalgic Encephalomyelitis is (and always was) medically accurate. And a statement about the evidence for immune dysregulation, which is indeed considerable and has been for a long time but has never before been recognised properly by NICE, the MRC, or physicians in general.
I think both of those quotes from the MRC, that Bob highlighted in his post #24, are very valuable indeed for use in letters and articles. This is a progressive view on the scientific evidence from the UK's Medical Research Council itself, covering two of the most important messages we need physicians and decision-makers to be aware of, so it's important to make as many people as possible aware of these quotes. Thanks for highlighting them Bob.
I'm wondering if it's helpful to critiscise the MRC's role in the PACE Trial now.
I'm wondering if it could be counter-productive, as they seem to have had such a significant about-turn.
It might be better to support what they are doing now, and to show that we support them when they do things well.
I agree Bob. I think it's time to work with the MRC. As I've suggested before, their own policy on open data is one thing to focus on. The mindset should be more about helping them to keep their funded research in line with their stated principles (eg open data and proper peer review in the case of PACE), and recognising when they do good things, rather than criticising them as such. The criticism over PACE belongs with the PACE authors and anyone else who was responsible for spinning and manipulating the PACE data. I do think things have changed somewhat at the MRC, and even if it doesn't yet go far enough, it's really important to support positive changes of direction and encourage them to continue on that changed course. No doubt they will be under pressure from those who want them to abandon this course and they need our support to continue with this change of tack.
I think what's done is done in terms of the research funding. We can critique published research but yes I would agree it's best now to work with the MRC for sure.
Indeed, I remain unconvinced that those in the trenches i.e. patients and primary care are even aware of these latest moves from the MRC or the previous £1.6m funding.
Yet another thing charities and patients need to bring to their notice. And to reinforce the message at the NICE Review.
Neuropathology - whilst I do like to see this call for proposals, I am reluctant to suggest that it endorses 'myalgic encephalomyelitis'. I think this line of research is overdue and probably too late for me but if anyone does apply and meets the approval needed - I hope the funding is appropriate.
Have been having a 'debate' on IiME Facebook about this kind of thing today/yesterday. It's incredible to me that it's taken so long for them to get there and I think it has a lot to do with that autopsy report from Chaudhuri to be honest. I can only hope that the Autopsy Tissue Bank goes ahead - and fast.