Possibly game-changing research news from the
Chronic Fatigue Initiative (CFI)
Pathogen Discovery and Pathogenesis Study
ME/CFS Biobank given £1 million
The development of a European biobank (blood, tissue, cell or DNA samples) for ME/CFS is an important step in research so this surprise award from USA’s National Institutes of Health is very encouraging for this pioneering project that was started in 2011.http://www.meresearch.org.uk/news/mecfs-biobank-given-1-million/
A UK RITUXIMAB CLINICAL TRIAL?
Research News: hope for a drug therapy?
www.ukrituximabtrial.org In summary UK charity Invest In ME has set the ball rolling for a UK confirmatory trial of the drug Ritximab and is working hard to raise funds.
At Invest in ME’s international conference in 2011, Norwegian cancer specialists Dr Øystein Fluge and Professor Olav Mella announced strikingly successful results in their pilot study of the immunotherapy drug Rituximab on ME/CFS patients. In that study [R1] 67% of ME/CFS patients had moderate to major improvement, compared to only 13% of controls.
The pattern of response indicated that ME may have an autoimmune component because rituximab works by temporarily wiping out immune-system B cells, which are implicated in autoimmune disease.
Multiple confirmatory trials are crucial because without evidence on safety and efficacy from independent studies in several locations, regulatory bodies will not approve or license rituximab for use in ME. READ MORE BY CLICKING HERE
The ME Associaton is supportive but cautious optimistic about Rituximab trials and you can read their detailed view by clicking here.
The Times reports on muscle cell abnormalities research findings
‘Biological breakthrough offers fresh hope for ME sufferers’ | The Times | 23 April 2013
From The Times, 23 April 2013 (story by Hannah Devlin, Science Editor).
Scientists have found compelling new evidence of an underlying biological cause for the constant fatigue suffered by ME patients.
The study revealed abnormalities in the muscle cells of ME patients, which are likely to contribute to feelings of tiredness and the inability to cope with sustained physical activity that many experience.
An analysis of muscle biopsies suggested that the cells had undergone substantial changes, making them less able to cope with exertion.
The finding shows that, whatever the initial trigger for ME, which affects more than 600,000 in Britain, the condition leads to a cascade of physical changes right down to the cellular level.
Some patients still report facing stigma due to popular misconceptions that the condition is “all in the mind”, despite growing evidence that ME has real physical symptoms.
Julia Newton, Dean for Clinical Medicine at Newcastle University who led the study, said that the latest science was changing “people’s perception of this terrible symptom”.
Professor Newton presented the findings at a meeting in London yesterday marking the launch of a collaboration aimed at generating more research into the disease.
In the study, scientists took muscle biopsies from ten patients and ten healthy but sedentary volunteers.
The muscle cells were grown into small pieces of muscle and then subjected to “exercise” in the form of electrical impulses.
The cells from ME patients produced on average 20 times as much acid when exercised, suggesting an underlying cause for the aching muscles that patients often experience as soon a they begin to exercise.
The cells also showed other abnormalities, such as reproducing more slowly.
“We have found very real abnormalities”, said Professor Newton.
University of Newcastle press release | 23 April 2013
The ME/CFS Research Collaborative
The text below is from the ME Association website. OK so it may be a little controversial but at least it looks like it will be putting money into biomedical research:
The ME/CFS Research Collaborative | “an extraordinary achievement to bring together such diverse views” | 30 April 2013
by Tony Britton on May 2, 2013
From the “Phoenix Rising” blogsite, 30 April 2013. Opinion piece by Simon McGrath.
Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.
Not everyone is happy
What’s not to like? Well, although it’s backed by most ME charities and almost all the UK’s biomedical researchers, the collaborative is deliberately a broad church including all types of research, including psychological research. And that has upset a good number of patients (as you can see on this thread: “read and weep…” was one pithy objection).
The ME Association acknowledges these concerns, but its Chair Neil Riley argues:
“The Research Collaborative is a big tent covering a wide range of views on causation, definition, epidemiology and management. We believe it is far better to be inside the tent discussing and debating these issues – as happened during the discussion session on Monday – than sitting outside where we would not have a voice. …Provided the Collaborative drives forward and promotes research into the biomedical causes of ME then we shall be in there, taking an active part and supporting its efforts.”
Action for ME, AYME, the Chronic Fatigue Syndrome Research Foundation, The ME Association and ME Research UK all agree. The most significant ME charity choosing to remain outside the tent for now is Invest in ME, who have voiced their scepticism, arguing that what’s needed is exclusive focus on biomedical research.
Nonetheless, it was an extraordinary achievement to bring together such diverse views into a single collaborative. As Stephen Holgate says, “It is the first time this has ever been done anywhere in the world—to get buy-in from these different communities”.
A new era of Research in the UK?
“a field that is in desperate need of new science“
_ Stephen Holgate
For the last twenty years, the study of CFS in the UK has been dominated by researchers with a biopsychosocial perspective, so it’s notable that the CMRC emphasises the need to do things differently. CFS is “a field that is in desperate need of new science”, says Stephen Holgate. At the meeting, he highlighted several new areas and opportunities:
* The application of state-of-the-art research methodology, including Genomics, Proteomics and Metabolomics.
* Using the new Networks approach as powerful tools for integrating and modelling biological data. This systems-based medicine approach focuses on how biological systems interact within the body, rather than looking at changes in individual genes or proteins. Nancy Klimas’s Neuro Immune Centre in Florida, with Gordon Broderick providing network modelling, is a great example of this.
* Emergence of large collections of biobanks. eg The UK ME-CFS Biobank and the CFI bio-bank in the States. Such well-characterised patient groups, with clinical and biological material, open the way to large-scale studies probing any number of biological mechanisms.
* Holgate also wants to engage a wide range of new fields such as maths and environmental science who could all add to the party.
This looks to me like an agenda for cutting-edge biomedical research, particularly as he says:
By coming together in this way, the application of state-of-the-art research methodology… will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets.
As he’s said repeatedly in recent years: “The key to success will be the engagement of scientists outside the field”, drawing new blood into CFS research, bringing insights from other diseases, and encouraging young new researchers to study ME/CFS. Similarly, the MRC stresses the importance of proposals for research funding to include at least some researchers new to the field. And the MRC, who were at the launch, has a highlight notice encouraging specific biomedical areas, including neuropathology and immune dysregulation.
One other important area discussed was heterogeneity and case definitions, which is a big issue for the whole field. Stephen Holgate referred to CFS/ME as a ‘complex group of conditions’ ie multiple conditions with different aetiologies, and so ‘phenotyping’ – dividing patients into different groups on the basis of clinical information, or even biomarkers – is a priority too.
How will the new Research Collaborative make a difference?
It’s still very early days for the research collaborative and the organisers hope that many new researchers will join the CMRC and help shape its future. However, it’s already been agreed that there will be quarterly meetings between researchers and funding charities, divided into four different streams. The content of those streams will be decided at the first meeting of the CMRC on May 22nd. This meeting will also firm up research priorities, and a fundraising drive will be on the agenda too. An annual CMRC science conference is also possible, but with such a new organisation, much remains to be decided.
Stephen Holgate knows that some patients will continue to doubt the value of the new Collaborative, and anything he says is unlikely to change their minds. However, he hopes that the efforts of the collaborative, and ultimately the results of new research stemming from it, will persuade those patients that this venture will be making a big contribution to understanding ME/CFS.
Simon McGrath has a science degree, and has watched not much happening in ME/CFS research for a long time, but now thinks things are finally kicking off. He occasionally tweets on research: follow @pSimonMcGrath