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Patients and researchers moving M.E. research forward

March 14, 2019

Yesterday, you may have seen a story published by an international news agency about some M.E. researchers facing online abuse and harassment.

We cannot condone any behaviour that deliberately causes harm and distress to others.

Every day we see our community of millions of people with M.E. around the world, plus clinicians, charities, researchers and academics, funding, supporting, and debating M.E. research, working together to move the field forward.

Our community is working together at international conferences and symposia, like the one happening right now in Geelong, Australia, to discuss mitochondrial function, immunology, neuroimaging, and new mechanistic and diagnostic paradigms for M.E.

Our community is working together as the International Alliance for Myalgic Encephalomyelitis (IAFME), asking the World Health Organisation to take leadership for people living with M.E. worldwide who continue to face poor access to healthcare and support.

Our community is working together to bring young researchers into the field, like our biomedical PhD studentships at and Brighton and Sussex Medical School and the University of Edinburgh, co-funded with the Scottish Government’s Chief Scientist’s Office.

Our community is working together, as the UK CFS/M.E. Research Collaborative (CMRC), to design and implement a comprehensive, national research strategy, and create an open cross-sector platform for effective knowledge-exchange and data-sharing.

Rachel, one the CMRC’s Patient Advisory Group members, told scientists gathered at a CMRC conference: “Over the years I have seen medics bemused and powerless when confronted with the symptoms of this illness […] Progress is being made, thanks in no small part to the efforts of researchers like yourselves. There is a greater understanding and acceptance of patients' experiences as the biology underpinning this disease is slowly unpicked. Despite this, there are no new treatment options and no cure […] We cannot over emphasise the importance of your research into the biology of this horrible disease. Thank you for being involved, and thank you for letting us help you.”

Anyone who supports the CMRC’s purpose to promote the discovery of the biological mechanisms that underpin M.E., and drive the development of targeted new treatments, is invited to join; all are welcome.