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Medical Research Council Announces ME/CFS Research Projects Worth 1.6m

Firestormm

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Medical Research Council announces ME/CFS research projects worth 1.6m

by Tony Britton on December 21, 2011 http://www.meassociation.org.uk/?p=9760

From a UK Medical Research Council press release: embargoed until 00:01am, 21 December 2011


The Medical Research Council (MRC) has awarded more than 1.6m for research into the causes of the debilitating condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

The investment will fund five new projects to investigate the mechanisms and underlying biological processes involved in the illness, which could eventually lead to better diagnosis and the development of more effective treatments.

CFS/ME is a complex and debilitating condition that affects around 250,000 people in the UK , including children. Symptoms include profound physical and mental fatigue, muscle and joint pain, disturbed sleep patterns and concentration and memory problems. The combination and severity of symptoms varies from patient to patient, making it a difficult condition to diagnose and treat.

Professor Stephen Holgate, Chair of the MRCs Population and Systems Medicine Board, said:

There is a pressing need to understand the causes of CFS/ME, and the MRC is delighted to announce substantial funding to address this. The quality and breadth of the scientific proposals we received in response to our funding call exceeded expectations and led to us funding more studies than we had originally anticipated.

Were especially pleased that the five new projects address many of the priority areas identified by our CFS/ME Expert Group in collaboration with charities and leading researchers in the field. We hope the awards will drive forward the research agenda in this area, paving the way for new diagnostic tools and treatments.

Dr Charles Shepherd, member of the MRC CFS/ME Expert Group and trustee of the ME Association, which has agreed to provide 30,000 to co-fund one of the five projects, said:

The ME Association is very pleased to learn that the MRC has followed up the research priorities identified by the Expert Group and agreed to fund five high-quality studies that aim to identify important biomedical abnormalities that may be involved in the underlying cause of CFS/ME.

The patient community will particularly welcome research involving biomarkers/biological fingerprints, which could lead to a diagnostic test, and immune system abnormalities, which could lead to more effective forms of treatment.

The fact that one of the studies is being co-funded by the charity sector marks a much needed step forward in co-operation between patients and researchers in this field. This initiative could be utilised to help fund additional research involving the priorities not yet covered by this announcement.

The MRC has striven to stimulate high quality CFS/ME research for a number of years. Most recently the specially constituted MRC CFS/ME Expert Group, which involves leading researchers in the field and related areas, along with representatives from two CFS/ME charities, identified six priority areas where important research questions remained unanswered.

In February 2011, the MRC issued a 1.5m call for proposals in these areas, aimed at encouraging fresh partnerships between established CFS/ME researchers and those with strong scientific credentials, but new to this field. The key areas were:

Nervous system disorders
Cognitive symptoms
Fatigue
Immune dysregulation (eg. through viral infection)
Pain
Sleep disorders

In response to the high quality of the applications received, the MRC decided to provide an extra 150,000 to support the package of successful projects. The awards range in total value from 120,000 to 450,000 and the successful applicants were:

Dr Wan Ng, Newcastle University
Professor Julia Newton, Newcastle University
Professor Anne McArdle, University of Liverpool
Professor David Nutt, Imperial College London
Dr Carmine Pariante, Kings College London

While the applications addressed most of the priority areas highlighted in the call, the MRC will announce shortly how it plans to stimulate research activity in those areas which were not covered.

Notes to editors

Contact Hannah Isom
Senior press officer, Medical Research Council
T: 0207 395 2345 (out of hours: 07818 428 297)
E: press.office@headoffice.mrc.ac.uk.

A full list of the five fully-funded programmes is included below, along with short summaries of the research proposals.

Identifying the biological fingerprints of fatigue

Principal investigator: Dr Wan Ng

Institution: Newcastle University

Summary: Researchers will analyse the immune systems of more than 500 patients with primary Sjgren syndrome a chronic condition with similar symptoms to CFS/ME, including intense fatigue.

Scientists will look for immune system abnormalities in these patients to help them identify the biological fingerprints of fatigue.

It is hoped this will improve their understanding of the mechanisms of fatigue with a view to developing new treatments. It also offers the hope of a clinical test for the diagnosis of CFS/ME.

Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment

Principal investigator: Professor Julia Newton

Institution: Newcastle University

Summary: Researchers will explore what causes dysfunction of the autonomic nervous system characterised by dizziness and light-headedness present in up to 90 per cent of CFS/ME sufferers.

They will use functional magnetic resonance imaging (MRI) to measure changes in blood flow to the brain and how this relates to cognition and nervous system dysfunction.

The researchers hope their work will lay the foundations for new diagnostic tools, a better understanding of nervous system abnormalities and the development of targeted treatments aimed at reversing these abnormalities.

Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenols


Principal investigator: Professor Anne McArdle

Institution: University of Liverpool (joint with the University of Leeds )

Summary: Scientists will use a newly-developed technique to study the energy-generating components of muscle cells (mitochondria).

Some studies have suggested that mitochondria may be dysfunctional in CFS/ME, leading to an energy deficit. The scientists hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.

Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?

Principal investigator: Professor David Nutt

Institution: Imperial College London

Summary: Researchers will study sleep disturbance a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours.

It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.

Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome


Principal investigator: Dr Carmine Pariante

Institution: Kings College London

Summary:

Researchers will examine the effects of a protein called interferon-alpha (IFN-alpha) on the immune system. IFN-alpha is produced as a protective response to viral infection and is commonly used to treat infections such as hepatitis C. IFN-alpha also induces fatigue and flu-like symptoms in patients, similar to that experienced by patients with CFS/ME.

The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue. Their work could lead to a check-list of blood measures to predict who will develop CFS/ME, as well as identifying new targets for therapy.


For almost 100 years the Medical Research Council has improved the health of people in the UK and around the world by supporting the highest quality science. The MRC invests in world-class scientists. It has produced 29 Nobel Prize winners and sustains a flourishing environment for internationally recognised research. The MRC focuses on making an impact and provides the financial muscle and scientific expertise behind medical breakthroughs, including one of the first antibiotics penicillin, the structure of DNA and the lethal link between smoking and cancer. Today MRC funded scientists tackle research into the major health challenges of the 21st century. www.mrc.ac.uk'

And let the criticism's begin...
 

justinreilly

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Well to start with, 2 of the 5 studies are not on ME ("CFS"). I thought this money was 'ring-fenced' for biomedical "ME/CFS" research. I guess it shouldn't surprise me what they can say with a straight face, but it still does.
 

Marco

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"The quality and breadth of the scientific proposals we received in response to our funding call exceeded expectations and led to us funding more studies than we had originally anticipated."

What a surprise!

I was always led to believe that the problem with biological ME/CFS research from the MRC's perspective was a lack of promising leads and quality proposals?
 

maryb

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Yes Justin why did they have to study patients with another illness? It doesn't make sense.... But hey its a start 3 out of 5 aint bad compared to what we.ve had up until now so I'm happy (ish)
 

Megan

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Any research into the biological mechanims of ME/CFS are of course welcome. But I notice the focus on 'fatigue' as opposed to PEM/PENE. Given that PEM is the signature symptom of ME/CFS, it is conspicuous in it's absence from the above studies.
 

Marco

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"Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome"


So new CDC and Emory were studying it almost 10 years ago?

http://www.cfids-cab.org/cfs-inform/Cytokines/raison.etal05.txt

I do hate to be negative and anything is an improvement on the MRC's previous record, but this all sounds so dated and piecemeal as if these researchers have never even heard of the Canadian criteria.

Even the mito study is a duplication of one currently underway.
 

Marco

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"Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome"


So new CDC and Emory were studying it almost 10 years ago?

http://www.cfids-cab.org/cfs-inform/Cytokines/raison.etal05.txt


I do hate to be negative and anything is an improvement on the MRC's previous record, but this all sounds so dated and piecemeal as if these researchers have never even heard of the Canadian criteria.

Even the mito study is a duplication of one currently underway.

Well that took all of ten minutes of reviewing the literature. QED :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2745948/

Interferon alpha, part of our natural immune defences, induces behavioural changes in reponse to viral infection (motor slowing, fatigue, depression and anxiety) that knocks you off your feet while you heal :

Taken together, these effects of cytokines on the brain and behavior appear to subserve competing evolutionary survival priorities that promote reduced activity to allow healing, and hypervigilance to protect against future attack.

What novel information will this provide?
 

Marco

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Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome

In fact, I'll save you the trouble and suggest you trial a course of the TNF alpha antagonist Etanercept and see if that helps!
 

Firestormm

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Interesting Marco. Perhaps it is a 'new immunological model' as it says? I don't know. Will have to wait for more details I suppose.

I see some more has been reported in the media outlets (below) perhaps (hopefully) more will follow and we might get some greater analysis of what exactly they will be doing. I believe more will follow about the cohort selection criteria.

Bit more news about the Mitochondria study here: http://www.healthcanal.com/disorders...-syndrome.html

Scientists at the University of Liverpool are the first to use a new laboratory technique that could reveal the causes of Chronic Fatigue Syndrome (CFS).

And a couple of quotes in addition:

Health canal: http://www.healthcanal.com/disorders...condition.html
 

oceanblue

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Stephen Holgate, take a bow

Well I for one am hugely impressed that the MRC has, for the first time, funded biomedical research into ME/CFS. It was a process that took a couple of years, I think, and had to overcome the MRC's historical lack of interest into anything beyond behavioural approaches. We should applaud Stephen Holgate for all he did to make this happen.

Even the mito study is a duplication of one currently underway.
They're using new technology. And I'm not aware of any mitochondrial finding that has been convincingly replicated so even if the studies use the same approach we would have the advantage of replication, which would add huge weight to the findings.

Taken together, these effects of cytokines on the brain and behavior appear to subserve competing evolutionary survival priorities that promote reduced activity to allow healing, and hypervigilance to protect against future attack.
What novel information will this provide?
That whole study is suggestive rather than definitive. And they didn't do this:
The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue.
So it looks like the new study will provide novel information.

I'm sure the studies funded won't be everyone's first choice (personally, I'd like to see a replication of the Dubbo studies) but they do represent an important step forward in biomedical research in the UK. Hopefully these grants will lead to bigger and better studies in future.
 

Marco

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Oceanblue.

The interferon alpha cytokine induced symptoms are collectively what is known as 'sickness behaviour'.

This has been extensively researched by the CDC :

http://www.cdc.gov/cfs/news/features/cytokines-and-cfs-symptoms.html

and Cheney back in 1994

http://www.investinme.org/Article422-3 Grey Information about ME CFS Part III.htm

Unless there's more to the study than stated, all it can say is that patients with ME/CFS show symptoms consistent with interferon alpha initiated sickness behaviour, ergo it could be hypothesised that they are in fact sick.

Now that may come as a wake up to the MRC after 25 years of being spoon fed by the psychosocial school but really we would like to know what is making us sick and what can be done about it.

As for the mitochondrial study the links don't work for me so I can't tell how innovative their approach will be.

I still find these proposals dated and fragmentary in great contrast to the approach that Nancy Klimas will be taking as Cort reports on the home page.
 
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The Sjorgen's study seems a bit random, but the rest are pretty interesting and relevant. I'm especially interested in the autonomic dysfunction since the light-headedness is my biggest annoyance, but it sounds like they're just documenting the changes, not looking for causes.
 

Enid

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Seems like a big step forward for MRC in the UK - but find the answer (apart from all the symptoms we all well know) has to be the holy grail - cause not just effects.
 

oceanblue

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Oceanblue.

The interferon alpha cytokine induced symptoms are collectively what is known as 'sickness behaviour'.
This has been extensively researched by the CDC :
and Cheney back in 1994
http://www.investinme.org/Article422-3 Grey Information about ME CFS Part III.htm

Unless there's more to the study than stated, all it can say is that patients with ME/CFS show symptoms consistent with interferon alpha initiated sickness behaviour, ergo it could be hypothesised that they are in fact sick.

Now that may come as a wake up to the MRC after 25 years of being spoon fed by the psychosocial school but really we would like to know what is making us sick and what can be done about it.

As for the mitochondrial study the links don't work for me so I can't tell how innovative their approach will be.

I still find these proposals dated and fragmentary in great contrast to the approach that Nancy Klimas will be taking as Cort reports on the home page.
IFN-a is just one of the cytokines implicated in sickness behaviour; it's role in fatigue has not been directly studied though that interesting sleep study suggests it has one. However, none of the studies you mention did this:
The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue.
How fatigue develops is very poorly understood and I can understand why the MRC would want to fund a study using IFNa treatment of Hepatitis C as a model of fatigue.

And the mitochondrial study is either novel or a replication so valuable either way.

I just think we should celebrate successes and this funding of biomedical research by the MRC is a big step forward here in the UK - they have never spent anything before in the 17 years of my illness. The studies might not be perfect but they could provide really valuable insight into the mechanisms of fatigue and ME/CFS. I think what Nancy Klimas is doing in the States is great, but given the history of research neglect here I'm still delighted by today's new funding.
 

Marco

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I just think we should celebrate successes and this funding of biomedical research by the MRC is a big step forward here in the UK. They have never spent anything before in the 17 years of my illness. I think what Nancy Klimas is doing in the States is great, but given the history of research neglect here I welcome today's new funding.

No argument there.
 

Firestormm

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I believe Dr Shepherd was thinking similarly:

'This announcement marks a significant change in direction at the MRC regarding ME/CFS research.

For the past 20 years it's been rather like watching the supertanker of UK medical research funding firstly taking no interest in ME/CFS and secondly, when it did finally do so, it headed off in the direction of the psychosocial model of causation and management involving abnormal illness beliefs and behaviour, inactivity, CBT and GET etc.

The MEA put a great deal of time and effort into trying to persuade the MRC to change direction.

An Expert Group was established to look at biomedical research. Through a long and rather complicated process of literature review, workshops and discussions an agreed list of biomedical priority items finally emerged.

Yes - the process took far too long. Unfortunately, that is how things tend to work at this level.

But we do now have a definite change in direction, with some funding to match (i know it's not enough), and the possibility of more funding to come.

Surely this is better than what we had before?'

Got my vote.
 

snowathlete

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Its great that the research council is funding some research into ME/CFS. But before i read the details of the studies, i cant help but think they will be focused in the wrong area. So, i took a look and this is what i personally think:

STUDY 1:
But there may be no link between Sjorgen and ME/CFS. who is to say that the markers for fatigue will be the same? The worry is that someone really wants to study Sjorgens and has applied for ME/CFS money to do it.

STUDY 2:
Havent we already found differences in blood flow? I suppose its a good study but its only looking at one part of the picture, and personally id rather that the money went into a better study.

STUDY 3:
Personally, im not sold on the significance of the energy thing and mitocondria, but I know some are, so maybe its a good study.

STUDY 4:
Yeah i think this is good, but again its only looking at a small part of the problem, which is likley not a cause of ME/CFS but rather a symptom. Having improved my sleep after a sleep study and appropriate medication, it is beneficial and has improved my quality of life, but it hasnt made a jot of difference to my ME/CFS.

STUDY 5:
Yeah, this might be good, but like study 1, the markers in one illness may have no realation to ME/CFS, so it might turn out to be a waste of money.

As others have said, some of these studies seem dated, not cutting edge that i would have hoped for. I suppose this might help set the foundation for more research, but alot of the foundation probably exists through previous studies done in the rest of the world, so does it bring forward the overall understanding of ME/CFS - i guess we will have to wait and see.
Well, this leaves me hopeful, but not optimistic. I cant help thinking that patients, if asked, would have chosen differently. I wonder which studies got rejected...bet there were some crackers!
 

Dolphin

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I believe Dr Shepherd was thinking similarly:

'This announcement marks a significant change in direction at the MRC regarding ME/CFS research.

For the past 20 years it's been rather like watching the supertanker of UK medical research funding firstly taking no interest in ME/CFS and secondly, when it did finally do so, it headed off in the direction of the psychosocial model of causation and management involving abnormal illness beliefs and behaviour, inactivity, CBT and GET etc.

The MEA put a great deal of time and effort into trying to persuade the MRC to change direction.

An Expert Group was established to look at biomedical research. Through a long and rather complicated process of literature review, workshops and discussions an agreed list of biomedical priority items finally emerged.

Yes - the process took far too long. Unfortunately, that is how things tend to work at this level.

But we do now have a definite change in direction, with some funding to match (i know it's not enough), and the possibility of more funding to come.

Surely this is better than what we had before?'

Got my vote.
I think the MEA deserves some praise. But pressure has been building on the MRC for a long time. There was a lot of submissions regarding the research strategy in 2003 (which was very frustrating), the Group on Scientific Research into ME ("Gibson Inquiry") brought focus to it (I spent a lot of time on a submission for that and I know some others also did work), FOI requests highlighting it and lots of general campaigning, protests, letters to the media, etc.

I had given up on it having an effect. So was delighted to hear about the initial 1.5m although still suspicious given, for example, the proceedings of the meeting they had. So this is better than I thought might on average happen (i.e. I thought it could all be brilliant, or even mainly be bad and on average somewhere in the middle while I think this is mostly good). I consider the Sjorgen's Syndrome neutral overall (i.e. don't think it should do harm while a project by a CBT School researcher might) but bad in terms of getting some of the 1.5m when I think the link is tenuous to say the least.