15 January 2014
Based on your feedback, our CEO Sonya Chowdhury has been further developing Action for M.E’s Research Strategy.
Over the Christmas break, I took the opportunity of some rare quiet time when the emails landing in my inbox were relatively few and far between and the phones were silenced to work on our new Research Strategy.
As many of you will know, over the last few months, we have been consulting with supporting members, researchers and others affected by M.E. to inform our Strategy. The engagement has been phenomenal with approximately 1,200 people inputting in one way or another.
Alongside two research priorities surveys (one asking people affected by M.E., another asking researchers) and a roundtable discussion at our as part of our Research Conference and AGM, I have had a staggering number of emails and letters. Thanks also to Simon McGrath and Russell Fleming for their Phoenix Rising article highlighting our work and consultation.
Broad range of views
The range of views, wishes and opinions has been broad and trying to reconcile these into one Research Strategy has not been easy. There will inevitably be some that we have not acted on. But I have listened and responded to them all and each one has played a valuable role in getting to this point. To give you flavour of what people have been telling me, here are just a few examples:
- “Stop funding research and focus on direct services and support.”
- “Fund only research.”
- “Prevention should not be a priority as we need a cure.”
- “So much money has been spent trying to find a cure and we’re years away from this, so focus on prevention.”
- “Epidemiology is not important and funding should only go into biomedical research.”
- “If we understand more about the groups and subsets of people M.E. affects, we will gain invaluable insight that we don’t currently have.”
Engaging with people affected by M.E.
At our Research Conference and AGM, the roundtable discussion focused on the question: “How can we further engage with our supporting members and people affected by M.E. to inform our research work?” This has been followed up by further consultation and discussion with others.
A number of ideas have been suggested such as a patient reference group and focus groups, regional panels, social media, clinical advisory groups, a smartphone app and more surveys/consultation. Importantly, there needs to be a balance between online and offline so that those who cannot attend meetings can participate and those that don’t use the internet are also able to participate. It has also been acknowledged that the resource and capacity implications can be prohibitive; however, it is critical we find the right balance.
Over the next few weeks, we will continue to work on the Research Strategy which includes further consultation with people affected by M.E. before it goes to the Board of Trustees for final approval and subsequent implementation in April. It will be a two-year strategy to tie in with our Statement of Strategic Intent.
Later, we will be considering our longer-term strategy. Delivering our strategy with the limited staffing and finances that we have available will be challenging: at the moment, 12 full-time equivalent staff reach more than 300,000 people through our range of services, outside of research. But we remain ambitious and committed to delivering our promises to people affected by M.E.
One of Action for M.E.’s values is clarity: we will be clear and transparent about what we’re doing, why we’re doing it and how we’re doing it. So, to kick start 2014, I’ll be answering your questions about Action for M.E., and the work we do, in my monthly CEO Q&A session.
If you have a question for me, please email it to me by noon Wednesday 21 January. I may not be able to respond to them all, but I will do my best: my answers will be posted in our Online M.E. Centre, and our Facebook page, at the end of the month. I look forward to hearing from you.
Have a look our other news stories.