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AGM 2022 - Exciting plans for future research!

September 27, 2022

Our Annual General Meeting (AGM) was held on Tuesday 20 September, chaired by Roger Siddle, Chair of our Board of Trustees.

The AGM covered Action for M.E.’s 2022 to 2027 strategy, ‘Shaping our Future’, alongside the Treasurer’s report, our future research hopes and plans to grow our vital Information and Support, Family Support, Advocacy and Healthcare services.

Sonya Chowdhury, Chief Executive of Action for M.E., spoke about our work with the UK Government to establish a national strategy for M.E., including the Department of Health and Social Care’s Delivery Plan on ME/CFS, which you can read the latest update on here.

Sonya also spoke about the research that Action for M.E. is currently involved in, such as co-leading DecodeME, the world’s largest ever M.E./CFS genetic study which launched 12 September 2022 and the PhD and Fellowship funding we have achieved. Action for M.E. are also aiming to deliver £2 million investment via our Breakthrough-ME research strategy and drive M.E. genetics research forward through a virtual Genetics Centre of Excellence. Sonya spoke highly about how patient and public involvement is at the heart of driving M.E. research forward.

“You are part of our study if you provide information through the questionnaire. You are part of our study if you provide DNA. You are part of our study if you help us recruit more people. You are part of our study if you just tell one person how to participate.”

Clare Ogden, Services Manager at Action for M.E., detailed our plans to grow our support services to reach more adults and children with M.E., to improve lives and reduce isolation. Action for M.E. will also grow our services to reach currently under-served communities with a specific focus on people from Black and other minority ethnic groups and those with severe M.E.

We continue to receive positive feedback regarding our services, highlighting their importance to people in the M.E. community.

We are also aiming to grow our Healthcare Services, which we were able to offer following our merger with The ME Trust earlier this year. Helen Winning, Healthcare Services Director, discussed how the health of people with M.E. is improved via access to our holistic Healthcare Services. Helen advised that Action for M.E. are looking to expand the Healthcare Services by creating a Nursing service and providing additional appointments for people who wish to use our services.

We are also delighted to share that we have re-appointed Roger Siddle and Sue Hardy to our Board of Trustees, and appointed Dr Nirmala Santiapillai to our Board of Trustees too. You can read more about our Trustees on our Trustee page.

We wish to thank everyone who was able to attend our AGM, and for everyone who has continued to support us and our work. A recording of the AGM will be made available on our YouTube channel shortly for those who were unable to attend.

Dr Nirmala Santiapillai

Nirmala has more than 30 years of global commercial experience in the Life Sciences and MedTech sectors. She is currently Vice President, Global Services at Oxford Nanopre Technology (ONT), a UK Life Sciences company whose mission is to democratise DNA sequencing such that all human disease can be understood to enable the vision of personalised medicine. Prior to joining ONT she spent 16 years in GE Healthcare where she built her knowledge of global healthcare systems. Nirmala has a PhD in Neurochemistry from University of Cambridge and a BSc in Biochemistry from Imperial College London.

Nirmala says: “Whilst I have not been personally touched by M.E. I was struck by the fact that there is so little understanding of the underlying genetic drivers for M.E. which in turn is impacting the development of diagnostic and treatment options. I believe that patients with any clinical condition should have the benefit of the best tools at hand to research the condition, making personalised medicine a reality for all.

“Being a cancer survivor I know the critical importance of fundamental disease research and the important role patient advocate groups play. I hope to meet you all and be able to meaningfully contribute to your journey to transform the lives of patients living with M.E.”