Dr Avindra Nath talks about the post-infectious CFS/ME study being undertaken at the National Institutes of Health.
VIDEO: CMRC Conference 2017 Day 1 – Welcome by Prof Stephen Holgate
Prof Stephen Holgate, Chair of the CMRC, opens the 2017 conference.
VIDEO: CMRC Conference 2017 Day 2 – Phil Murray
Phil Murray from the Patient Advisory Group talks about the importance of involving patients in M.E. research.
VIDEO: CMRC Conference 2017 Day 2 – Prof Carmine Pariante
Prof Carmine Pariante of Kings College in London gives a talk on the relationship between inflammation and depression.
VIDEO: CMRC Conference 2017 Day 2 – Dr Neil Harrison
Dr Neil Harrison of the Brighton and Sussex Medical School gives an update on MRC funded research.
VIDEO: CMRC Conference 2017 Part 2 – Prof Carmine Pariante
Prof Carmine Pariante of Kings College London gives an update on MRC funded research.
VIDEO: CMRC Conference 2017 Day 2 – Prof Julia Newton and Karl Morten
Prof Julia Newton of Newcastle University and Karl Morten of Oxford University talk about forging international collaborations in the field of M.E./CFS research.
VIDEO: CMRC Conference 2017 day 2 – Prof Jose Montoya
Prof Jose Montoya of Stanford University talks about his latest research involving Cytokines in the blood of people with M.E./CFS.
Counting The Cost – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Foreword:
For the past 20 years there has been extensive argument in the UK about the causes and diagnostic criteria for this illness. For some considerable time, the conventional wisdom was that this illness was purely psychological in origin.
The World Health Organisation has clearly classified CFS/ME as a neurological disease in its International Classification of Diseases (ICD), section G93.3.
Despite this clarity, there is still a lack of universal agreement about CFS/ ME in the UK. This has led to a paralysis of research into both the biomedical causes of and treatments for CFS/ME, and the research that has been done has focused primarily on the psychological side.
The time has come for a proper research strategy for CFS/ME, looking at both bio-medical causes and treatments. In order to commence a dialogue with government and other interested parties, it is essential for everyone to be on the same page. To achieve that degree of agreement will be a challenge, but I believe the first step in that process is to start a new public conversation about this horrible illness.
The purpose of this report by the health think tank 2020health, sponsored by the Optimum Health Clinic, is to do just that. Nothing concentrates the mind like money. This is the first cost of illness study of CFS/ME to the UK economy combining direct costs (including primary and secondary care contacts, prescription and over the counter
medications, and complimentary treatments) and indirect costs (including work productivity losses, informal care and welfare payments). The results are staggering.
In commissioning this report, our hope is that we can:
* Demonstrate clearly all the costs of CFS/ME to the UK economy;
* Use this report to start a new public conversation about the illness;
* Start a dialogue with all interested parties to create a new strategy to research the bio-medical causes of and treatments for CFS/ME
You can read the full report HERE.
NIH announces centers for myalgic encephalomyelitis/chronic fatigue syndrome research
Press Release: NIH, September 27, 2017. The National Institutes of Health (NIH) will award four grants to establish a coordinated scientific research effort on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The total cost of the projects for fiscal year 2017 will be over $7 million, with support from multiple NIH Institutes and Centers that are part of the Trans-NIH ME/CFS Working Group.
The grants will support the creation of a consortium made up of three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC). The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS. The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.
“These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease,” said NIH Director Francis S. Collins, M.D., Ph.D.
ME/CFS, which affects more than 1 million Americans, is characterized by profound fatigue that does not improve with rest, and may include problems with thinking and memory, pain and a range of other symptoms that negatively impact everyday life. A key feature of the disease is post-exertional malaise, which is a worsening of symptoms following mental or physical activity. The disease can last for years or decades, with those most severely impacted ending up house- or bed-bound. It is unknown what causes the disease and there are no proven treatments.
“These grants will use innovative technologies and research methods to unravel this devastating disease, which we know so little about,” said Walter Koroshetz, M.D., director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS) and chair of the Trans-NIH ME/CFS Working Group.