The Medical Research Council yesterday (12 April 2012) filed new overviews at its website of the five ME/CFS research projects it agreed to fund at the end of last year. The total value of their funding is £1.6m spread over the next three years – though some of the projects are due to be completed earlier than that.
Up to now, only the briefest of abstracts – made available when the Medical Research Council announced this funding on 21 December last year – have been in the public domain.
Two-page summaries of each project, each divided into lay and technical sections, can be downloaded as a single pdf by clicking HERE.
The projects are:
1) Ref: MR/J002895/1. Principal investigator: Professor Anne McArdle, University of Liverpool. Title: Determination of mitochondrial function and cytokine production in skeletal muscles of patients with CFS.
Starts: 1 May 2012. Due to finish: 30 April 2015. Amount awarded: £252,030.40
(The ME Association's Ramsay Research Fund will contribute £30,000 to this study).
2) Ref: MR/J002712/1. Principal investigator: Professor Julia Newton, Newcastle University. Title: Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment.
Starts: 1 June 2012. Due to finish: 31 May 2015. Amount awarded: £454,573.48
3) Ref: MR/J002720/1 Principal investigator: Dr Wan Ng, Newcastle University. Title: Identifying the biological blueprints of fatigue.
Started: 1 January 2012. Due to finish: 31 December 2014. Amount awarded: £451,572.73
4) Ref: MR/J002852/1 Principal investigator: Professor David Nutt, Imperial College London. Title: Can enhancing SWS (slow wave sleep) improve daytime function in patients with CFS?
Started: 1 April 2012. Due to finish: 31 March 2013. Amount awarded: £119,999.60
5) Ref: MR/JOO22739/1 Principal investigator: Dr Carmine Pariante, King's College London. Title: Persistest fatigue induced by interferon-alpha: a new immunological model for Chronic Fatigue Syndrome.
Started: 1 March 2012. Due to finish: 28 February 2015. Amount awarded: £373,075.15
That lot tots up to £1,651,251.36.
A small price to pay if it eventually results in Wessely’s professional head being publicly mounted on a spike!
A grand total of £0 to go to ME research. Right back to where we were. Thanks for nothing MRC!
There is no way they will get away with giving half the funds on Hep C and Sjogrens, unless they are only testing for fatigue. The MRC panel should step down and disband this rotten mess if they don’t even think there is a disease.
CFS/CDC defined nonsense is the only definition to be used in the other research, who’s investigators show discourtesy to patients by also using “novel” tests. What if those are flawed?
No Dr uses fatigue as a marker to diagnose any disease.
Will the ME association be making a complaint?
I agree with you JoT. I have been looking through the pdf trying to see exactly which definition they are using. Unless I missed it there are no mentions of M.E. just C.F.S.. – the curse of the name strikes again! Nobody seems to be stating outright what definition they are using.
So… it would seem that to attempt to study M.E./C.F.S. (or just C.F.S. as they would have it) at least two of these studies are going to study different conditions because the group C.F.S. is too heterogenous and will garble the results. Well, why the hell not use a tighter definition then – why not study M.E. sufferers not the huge pool of C.F.S. sufferers. Then later you could see if the same results hold true of a wider group. I wonder if this is a political decision and maybe they wouldn’t get the grant money if they rocked the boat?
By the way, if anyone of you research bods are reading this, fatigue is just ONE symptom – in fact (& maybe I speak for just for myself here) it isn’t necessarily the most disabling or distressing symptom and in my own case is secondary to other neurological symptoms.
As they say, garbage in, garbage out and I’m afraid that’s what we’ll end up with. More confused and contradictory information that won’t be relevant to those who are most ill.
I , like JoT, feel that the M.E. Association should make some comment here. If fact, if anyone out there has the health & energy to start a Not In My Name protest I would definitely be signing my name!
Wish I lived in Norway!
I don’t have time to comment here right now on Sunday morning, or correct inaccuracies in the last two messages, as I’m about to work away for a few days.
However, there is a detailed discussion on the MRC announcement over on MEA Facebook where I have answered queries, clarified uncertainties, and corrected inaccurate information about the studies being funded.
Dr Charles Shepherd
Hon Medical Adviser, MEA
Member – MRC Expert Group on Me/CFS research
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I agree with the fact that “fatigue” is only one small portion of the disease. The cognitive impairment of this illness could be the most frustrating and demoralising symptom. I speak of my own experiences. I am currently at university studying to become an educational psychologist, hopefully to help children and young people with this misunderstood disease. There is not enough sufficient support at school, college or at universities. Even lecturers fail to understand. So where does this leave the young generation on children with m.e? And those that cannot hold down a job or finish their education to achieve their dreams ? The problem does not only lye the in lack of research but is the ignorance and lack of support there is for children and adults. We are made to feel that m.e is an excuse. I am sure I speak for all m.e sufferers when I say that something needs to be done quicker.
I would love to read Dr Shepherd’s explanations and answers to queries. However I am not a Facebook member.
I am in the same position as Invisible Woman. I have no plans to register with Facebook at the moment. It would be great to read Dr Shepherd’s helpful explanations and discussions about important medical research here on the main ME Association page/site. Thanks!