M.E. Research and Practice conference at Hove Town Hall 7 October 2014 Slides from Sonya Chowdhury and Mary Jane Willows’ presentations, part two

“To promote the highest quality of basic and applied evidenced based and peer reviewed research in to CFS/ME” National strategy Collaborate Stimulate Facilitate Promote Profile-raising The GRAND challenge UK CFS/ME Research Collaborative

UK CF/ME Research Collaborative Conference 2014 AYME’s role: honoured to be a member of the Collaborative see it as vital in energising and moving forward research in the field – especially attracting new researchers represent children and young people and ensure their voices are heard at every level heighten the profile of those most severely affected in research priorities Chronic Fatigue Syndrome Research Foundation

UK CF/ME Research Collaborative Conference 2014 Sally Crowe (Crowe Associates), a facilitator known to and respected by many of us for her previous work with ME/CFS Charities, worked closely with AfME’s patient reference group and Sonya Chowdhury, CEO to prepare for a unique workshop: ‘Working together for more and better research that benefits people with CFS/ME’ What made this session unique was that Sally worked for the afternoon with a mixed group of approaching 80 people made up of: people with ME carers clinicians researchers. Chronic Fatigue Syndrome Research Foundation

Objectives of workshop  consider current opportunities for participation in research, and where patients and carers have made a difference  identify specific ways that the CFS/ME community can contribute meaningfully to CFS/ME research projects (e.g. clinical trials)  identify what the CFS/ME community can contribute overall to CFS/ME research  produce a report of comments, ideas and discussion points for the CMRC to consider. Chronic Fatigue Syndrome Research Foundation

‘ Working together for more and better research that benefits people with CFS/ME’ Session One: General discussion session, in self selected groups (with the research cycle used as a structure, where needed): 1. Identifying research topics/questions 2. Prioritising 3.Commissioning 4. Designing research 5. Managing research 6. Undertaking research 7. Analysing and interpreting results 8.Disseminating 9. Evaluating 10.Reviewing 11. What the gaps are? - developing consensus, lobbying for new research. Chronic Fatigue Syndrome Research Foundation

‘Working together for more and better research that benefits people with CFS/ME’ Session two: (focus on solutions and ideas): Delegates decided which discussions topics they wanted to participate in 1.recruitment to studies 2.getting the right research plan (protocol) 3.moving ahead on research priorities 4.sharing (dissemination) of research results 5.building research collaborations. Chronic Fatigue Syndrome Research Foundation

3. Moving Ahead on Research Priorities Key question: How can the CFS/ME community advocate and lobby for research priorities (where they have been developed) to become funded studies?  Atmosphere of openness and willingness to share  Debate/discussion was respectful and engaging  All points of view were heard and respected  Showed enthusiasm of all present to work collaboratively to move agenda forward Two groups discussing this topic came up with 14 separate bullet points for Collaborative to take forward Chronic Fatigue Syndrome Research Foundation

Research - What next: “Don’t forget, for the Collaborative,this isn’t the end of the meeting: this is the beginning of the journey.” Prof Steven Holgate AYME parent member, Mark, shared his thoughts of the event: "The mixture of people attending the conference was amazing. There were parents like me there, as well as doctors, researchers, psychologists, people who had significant experience of ME/CFS, and people who were not so familiar with it but wanted to know more. A huge benefit of this collaboration was the scope for everyone attending to make a real difference.” Chronic Fatigue Syndrome Research Foundation

Thank You to Clare Ogden for producing the online report Chronic Fatigue Syndrome Research Foundation