5. Professor Nancy Klimas – Director, Institute for Neuroimmiune Medicine, Nova Southeastern University, USA
Although Professor Klimas is best known for her research on the immunology of ME/CFS, this presentation concentrated on the genetic component. She explained how genetic studies are very costly to perform and large numbers of patients – in the region of 30,000 – are required to get meaningful results.
Professor Klimas has assembled a large multidisciplinary team, which will be led by two ‘Blue Ribbon Fellowship’ medical students. The research will aim to understand the genetic risk in ME/CFS and the possible role of gene mutations (= permanent alterations in the DNA sequence that makes up a gene, such that the sequence differs from what is found in most people). This sort of information could help to provide a ‘genetic signature’ for ME/CFS and explain why some people recover from ME/CFS and others do not.
This is going to be a global study whereby people with a diagnosis of ME/CFS will be asked to donate clinical data using social media. 600 people have signed up so far.
Participation in the study requires participants to have a computer, an email account and agreement to map their genes using a genetic testing website. People who agree to participate will be asked to provide the research group with their raw genetic data to help compile an ME/CFS Genetic Database.
Besides providing genetic data, participants will be completing online surveys at their own pace. All communication is done via secure email server – so no travel is necessary and participation can be done from home.
More information, including a video, here:
http://www.nova.edu/nim/research/mecfs-genes.html
CS note: After the presentation, I spoke to Professor Klimas about the UK MEGA research study and the overlap that this has with the one she is now doing.
