Experts in neurovirology, imaging and orthostatic intolerance will take the lead for the fourth annual UK CFS/ME Research Collaborative (CMRC) conference, being held in Bristol in September.
Established in 2013, the CMRC aims to promote the highest quality of basic and applied evidence-based and peer-reviewed research into ME.
The two-day conference – being held September 13-14 – focuses on the biology of ME and how researchers can work together collaboratively to further research. It will be held in Future Inns Cabot Circus, Bond St South, Bristol.
Dr Avindra Nath from The National Institutes of Health (NIH) in the US, will talk about his work on neuro- virology and infections of the nervous system.
Blogging recently about the work of the NIH, its director, Dr Francis Collins, explained that Dr Nath is leading “an extremely detailed and comprehensive evaluation of several dozen people with ME/CFS, focusing on those whose symptoms can be clearly traced to an infectious-like illness and who have been sick for less than five years.”
OTHER PRESENTATIONS INCLUDE
* Autonomic intolerance by Dr Peter Rowe, John Hopkins Children’s Centre, Baltimore, Maryland
* Imaging in research by Dr Matt Wall from Imanova, a translational research company that specialises in applying PET and MRI scanning techniques to improve drug development and health research
* Pain and ME by Prof Maria Fitzgerald, University College London
* Learning from other illness fields by John Gallacher, professor of cognitive health at Oxford University
The conference is open to professional and student researchers (undertaking a research-associated study at an academic institution).
Associate Members – that’s anyone with an interest in M.E. who isn’t a researcher – can attend on the first day.
It’s free to become an Associate Member of the CMRC – visit https://tinyurl.com/ksvdw9q to download an application form.
Registration for Associate Members is £45.
TO SEEK ASSISTANCE WITH THE COST OF ATTENDING
As the CMRC does not receive enough income to cover costs, it has to ask for this contribution, which is heavily subsidised to enable access to the conference for people with ME.
If you are unable to meet the cost of the ticket but would still like to attend, please contact the CMRC (via Action for ME) to request a full/ partial waiver.
For those unable to attend, some presentations from both days will be livestreamed so that you can watch online at home.
This sounds great.
However, advocates for pwME must remember to stress and keep stressing throughout the conference … like a broken record … that the Oxford Criteria must now be retired.
Excerpt from article below:
The Oxford criteria are a set of criteria for the diagnosis Chronic Fatigue Syndrome published in 1991 by a group of psychiatrists.
Criticisms
• How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? For every 15 patients selected under Oxford criteria, 14 will be false positives when compared to Canadian Consensus Criteria. The Pace trial and FINE trial used Oxford criteria.
• Post-exertional malaise is not a listed symptom. When this symptom is not mandatory, patients with Chronic Fatigue and not the grossly misnamed disease Chronic Fatigue Syndrome are swept into the study.[5]
• Depression is not an absolute exception for a possible cause of Chronic Fatigue (not to be confused with Chronic Fatigue Syndrome.) This allows for patients with depression to be misdiagnosed with CFS.[6]
• Many psychiatric disorders are not excluded. Although schizophrenia, substance abuse, bipolar disorder, eating disorders, and verified organic brain disorders are excluded from diagnosis in the Oxford criteria, anxiety disorders, depressive disorders, and hyperventilation can be included. This allows for a more heterogeneous patient sample which can render clinical study results indeterminate.[7]
• US NIH Report Calls for UK Definition of ME/CFS to be Scrapped – The Argus Report By: Penny Swift.
Excerpt
The United States National Institutes of Health (NIH) has issued a draft report that highlights the dire need for scientific research that will help find a cure for the millions of people suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) worldwide. The report also highlights the fact that the decades-old UK Royal Society of Medicine’s Oxford criteria for ME/CFS are severely “flawed,” and that continuing to use these criteria may “cause harm.” Further, the NIH report says that the Royal Society definition should “be retired” and replaced with a single case definition agreed to by the ME/CFS community.[8]
http://me-pedia.org/wiki/Oxford_criteria
Totally agree Lidia. Well described and summarised, thank you.