Discussions with CFS Research Foundation
Friday 16 May
Following the sad death of its founder and Honorary Director, Anne Faulkner, the Trustees of the CFS Research Foundation are, regretfully, considering closing the charity. They have asked Action for M.E. to accept a donation of its funds for research, and take over the responsibility of overseeing a project they are currently funding.
Sonya Chowdhury, Chief Executive, Action for M.E., says, “We are enormously honoured to be asked by the CFS Research Foundation to carry on its important work.”
As part of the agreement, Action for M.E. has been asked to manage the funding (already secured and allocated by the CFS Research Foundation) for the neurophysiology of pain in M.E./CFS study.
Sonya says, “Having agreed with the Foundation that we will consider this, we are now exploring what needs to be put in place to take on the role of overseeing the pain study. This will entail setting up a legally binding contract with Queen Marys College which sets out clear expectations for both parties. We have worked hard with our currently funded research teams to ensure a high level of communication regarding the progress of their projects with our supporters and donors and this project would be no different."
This study, which has already started, uses cutting-edge technology to investigate how the brains of people with M.E./CFS experience pain. The £231,410, three-year study has been put through the CFS Research Foundation’s rigorous application process, meeting the criteria set by its scientific advisory panel and the charity itself. It is being carried out by Professor Peter White and Dr Julius Bourke at Bart’s and the London Medical School and the Imanova Centre for Imaging Sciences, London.
Sonya says, “I am aware that some members of the patient community are likely to be critical of Action for M.E. for considering accepting the CFS Research Foundation’s donation of funds in view of the research project it is currently funding.
“We are doing so because our Trustees believe that it is essential to foster meaningful engagement between people with M.E./CFS and researchers investigating the condition. Funding such research would mean that we can legally set out clear terms and conditions regarding required levels of communication and co-operation.
“All our research-funded work is subject to rigorous checks and this study is no exception. Our new revised assessment process for research applications, published today, sets out how we do this for applications that are made to Action for M.E., and details our increased level of engagement with people with M.E./CFS in our research work.
“We want to be open and transparent with our Support Members about this discussion taking place, which is why we are making this announcement today. I would invite people to contact me directly if they have any questions.”
Prof White says, “Thanks to the CFS Research Foundation’s funding, we will improve our understanding of why patients with M.E./CFS suffer from so much pain. We will do this by comparing patients and healthy controls in regard to their ability to process pain, mapping out the pain pathways in the brain, and seeing how different brain chemicals are responsible for the pain.
“The study has brought in researchers new to the M.E./CFS field, especially those working at the Imanova Centre for Imaging Sciences where study participants will undergo fMRI (functional Magnetic Resonance Imaging) brain scans."
CFS Research Foundation: http://cfsrf.org.uk/index.php?optio...ch&catid=36:current-funded-research&Itemid=58