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 MRC’s 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.
“We’re 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, King’s 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
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 Sjögren 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: King’s 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
So there’s
*a sleep study, using drugs to increase slow wave sleep, with the Prof that annoyed the government by saying horse riding was more dangerous than ecstasy and society was illogical in its prohibitions (Nutt, Imperial)(PSY)
*Study into mitochondrial defects – not on ME, not necessarily even on CFS/ME (McArdle, Liverpool)
*Following HEP C patients being treated with interferon alpha, which is downregulated in Lombardi 2011, the cytokine study (Pariente, Kings)(PSY)
*Immune system analysis IN SJØRENS SYNDROME (Ng, Newcastle)
*Study of brain changes that cause dizzyness, using fMRI to study brain blood flow (Newton, Newcastle)
How come 2/5ths of the studies funded are not directly looking at ME? Why is that? I thought this money was ring fenced for biomedical investigation into ME. It was little enough as it was. How come a different 2/5ths are being run at Kings and Imperial, by the usual suspects?
I know the argument will be that the results will also apply to us, and Sjørens syndrome is very similar, but really! I feel like the bully’s stolen my lollipop that Santa gave me. Only one out of five studies can strictly be said to be filling the original brief, Newton’s, from the information given so far.
This money represents £6.50 per head of us. Not a vast amount. Am I being too suspicious…? The devil will be in the detail, no doubt.
Doesn’t look like they are saying Sjogrens or Hep C are similar to ME (ME/CFS). They appear to be saying ME is “CFS/ME”, which it is not. That CFS is fatigue, which it is, but that they can measure this subjective symptom in exactly the same way in other diseases, although scientifically they cannot. So patients with ME cannot really be sick they only have fatigue.
Doing this they would be in breach of the WHO classification system, as it places different entities in more than one rubric. As CFS (neurological ME/CFS) although not said to be ME is place at G93.3, Sjogrens and Hep C are placed elsewhere.
I feel throughly insulted and dismissed by the MRC who clearly have no intention of looking for the cause of this disease.
I have to say that my first reaction is disappointment.
On too many previous occasions, giving the benefit of the doubt has been no more than misplaced optimism.
Prof Newton’s work could be valuable.
Investigating mitochondrial dysfunction could be worthwhile – but there is already an empirical test for that. ( See http://www.drmyhill.co.uk – Mitochondrial Function Profile)
The other three seem to be studies of anything as long as they don’t involve ME – money diverted from ME to look at other things.
I hope I’m wrong but I’ve been too trusting and too optimistic in the past.
Why no mention of testing treatments? Why is it all ‘with a view to…’ – ‘hoping that…’ – etc Why no ‘Let’s try X’?
I can’t see anything which will prevent me from losing another 20 years to this fould illness.
Personally I am very encouraged by this, and slightly disappointed by the responses already voiced. I know that as a community we have all learnt to be defensive because of the appalling treatment/neglect many of us have experienced from the medical profession. However, let’s not allow this attitude cloud our judgement – I expect that a lot of scientific research takes a slightly roundabout route in order to reach an end goal, and to my (admittedly unscientific) mind these look like interesting and relevant approaches. I will be watching the results of these tests with interest.
I find it astounding that the ring-fenced money promised for ME/CFS would be awarded to researchers studying other illnesses. This sadly reminds us of the situation in the States a while back, when it was discovered that money allocated for ME/CFS was being spent on other areas.
With so little money having been directed at biomedical ME/CFS research in the UK, one would have hoped that once this ring-fenced sum was to be distributed, it would certainly be directed at studies dealing with proper ME/CFS (with a narrow definition such as the CCC or the ICC).
I am also a little surprised to see that the MEA (an organization which I value) wouldn’t point this out in its comments.
Not mentioned here Two aplicants for funds are psychiatrists
David John Nutt Imperial College London
is a British psychiatrist and neuropsychopharmacologist specialising in the research of drugs that affect the brain and conditions such as addiction, anxiety and sleep. President of the European College of Neuropsychopharmacology.
Dr Carmine Pariante King’s College London
is a consultant psychiatrist in the Perinatal Service and also works in the division of psychological medicine at the Institute of Psychiatry, King’s College London. He is head of the perinatal psychiatry section and head of the stress, psychiatry and immunology section
I would question putting two seperate conditions together chronic fatigue and ME ?
At first glance at least two of these studies are so tenuously connected to ME they may as well be studying woodworm for all the good it will do us!!
Talk about getting funding under false pretenses!!!!
One study, if proven, could do more harm than good –
By treating a symptom, lack of sleep, instead of getting to the underlying cause I can envisage all kinds of problems –
Say for example they do prove through that sleep study that particular drug helps us function better in the daytime. So then benefits assessments show we are fit to work, so we have to work.
But we still have this underlying illness that is, we assume, an immune disorder, neurological, viral, end up driving our immune systems further into the ground, putting us around more viruses, potentially blinding us to all the signs our body gives us that we NEED to rest in order for our bodies to cope. That could do more harm than good and some could work themselves into an early grave.
What we need is the research money being spent on research on people who actually have ME – hell, at the moment we don’t even have agreement on the actual biological markers that prove ME – where’s the funding for that..?!
Those people taking funding from us for their own projects and giving lip service with a “could help” thrown in at the end is tantamount to theft. Stealing OUR funding to use for other things is DISGUSTING. And that’s the most polite thing I can say about this.
Fuming…..
Congratulations to the MEA, and Charles Shepherd in particular for all it’s work over many years (and CS’s contribution to the Expert Group) tackling the MRC’s ‘reticence’ to fund biomedical research. And thanks too to Prof Stephen Holgate; I don’t think this would have happened without his central role.
Please let us be optimistic. Sjogrens and Hep C have accepted, defined diagnostic criteria, unlike CFS/ME. As such, we can learn from these illnesses and then see where there are similarities with CFS/ME. Sjogrens is and AI illness and Hep C is a chronic viral infection. This will in turn lead to further research. I think that this is a step forward in the right direction although agree that this is far too little to cover such a vast research area. At least it is a start. Personally, I would have liked to see some therapeutic, placebo controlled randomised trials, but this would have been too far a stretch politically for the MRC. Let us provide our support to these researchers and hope that they maintain the highest level of scientific and medical rigor and integrity, which is their responsibility.
Thanks to these researchers that have taken an interest in CFS/ME.
Dr Chez ( A doctor recovering from ME)
You would think that Sjogrens and Hep C had accepted, defined diagnostic criteria, but it depends on what the doctor diagnosing wishes to use. That obviously is more so with Sjogrens than Hep C. ME can also be diagnosed according defined diagnostic criteria but people won’t use it as no one will fund scientific research into ME. I think the double standards are obvious.
Sjogrens like ME causes AI symptoms, but that does not make it an autoimmune disease. MRVs have been linked to both diseases, although the work on Sjogrens has not yet been published. MLVs cause autoimmune symptoms. That is at least a hypothesis as appeased to a weak link to the body attacking itself for unknown reasons.
The MRCs funding of some CFS research is more a dropping a toe in the water of biomedical research, it doesn’t mean they will again and whilst they continue to use diagnostic criteria that requires no symptoms or signs I have no doubt the MRC is not interested.
Its not nice to say this, but I think that is why they choose to manipulate us the way they do. So that we never know if they have changed.
First reaction – disappointment; second reaction – astonishment.
However, that doesn’t mean I am denigrating the MEA or the individuals who have worked so hard to improve matters. Far from it. It’s a thankless task akin to beating your head against a brick wall and then being castigated for not making a hole in it. THANK YOU everyone concerned.
In spite of that gratitude, sad to say, we are still being offered a look at “fingerprints of fatigue” which is a generic subject hardly bearing on M.E. at all. I don’t have ‘fatigue’ – I’m mentally and physically exhausted, my mitochondria don’t work properly (as shown by a test), I have no stamina, I could sleep for ever but feel no better, etc.
(N.B. “..hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.”) Where’s the research which will improve my health?
“slow wave sleep” – another generic investigation already studied endlessly; why re-invent the psycho-wheel?
“..hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers…” The question could have been asked about depression, MS and goodness knows how many other illnesses. Why no research specifically about M.E.? NOT CFS/ME.
“..patients undergoing … treatment for Hepatitis C … in relation to the development of fatigue.” More fatigue. M.E. is NOT fatigue. Study M.E. , not hepatitis.
When HIV reared its ugly head, millions of pounds were thrown speculatively at every conceivable TREATMENT; some worked, some didn’t, but patients were treated and they benefited! What do we get? In this neck of the woods, nothing; absolutely nothing. No treatment, no monitoring, no support, no interest, no care. Fundamental research is fascinating and, probably, beneficial in the long-run, but it won’t alleviate any symptoms in the next ten years. Life is too short – investigate treatments as was done with HIV. Give us hope.
As I said on MEA FB it’s a bit like the Arab spring, there is a necessary transitional period, the MRC (previous dictators/deniers of biomedical funding) cannot be seen to lose face by *wholly* embracing actual ME research, that’s why this new initiative is in seeming dribs and drabs. They denied our illness was physical for decades, wasted £5 million on PACE, so they are hardly going to go cartwheeling into a biomedical utopia of pure ME research. Having said this, I too am grateful to all the researchers involved, who have a curiosity about truth and actually helping us.
nmj I agree 100% now all we can do is keep it all “rolling”
I want to also thank all the researchers that have got involved to
move BIOMEDICAL research FORWARD.
As a person who has ME but also completed a PhD in Meducal research I have to reply and reassure you these studies ARE about ME! They are using better understood conditions or ones with less variation and arguement amount types patients to develop tools that apply to ME. If a blood marker for profound fatigue can be found by looking at Sjorns patients or hep c patients then this could very well help create a diagnostic test for ME. The use of hep c patients who get interferon a and develop ME like symptoms is a standard style of Medical study designed to “model a disease” so that it can be studied in a controlled setting. It allows the scientists to catch the very start of the ME like fatigue and lOok at changes in blood markers-do u see that doing this in ME population directly is nearly impossible-we can’t go back and look at yours and mine blood from start of our illness and catching new cases would be very tricky/unpredictable. So looking at these people is VERY useful as they track before and after etc from start. Hope that helps clarify?