The 2017 Invest In ME Research Conference Report – Dr Charles Shepherd | 22 August 2017

August 22, 2017


The Invest in ME Research conference took place on Friday, 2nd June, 2017.

This year’s conference was held at One Great George Street, an impressive Edwardian building located opposite St James’s Park, London. There was an excellent mixture of people with ME/CFS, carers and parents, charity representatives, health professionals and researchers from all over the world.

There was an emphasis on immunology and new approaches to research that are aimed at increasing our understanding of the underlying disease process in ME/CFS and research to potentially deliver more effective forms of treatment.

Presentations covering treatment were largely focused on the clinical trials taking place in Norway into the use of rituximab and cyclophosphamide.


  • This is a copy of the conference summary that was published in the Autumn issue of ME Essential magazine
  • We have made Dr Shepherd's full (16-page) conference report available as a download, which might make it easier for people with M.E. to read at their own pace

Summary review

Chairman, Dr Ian Gibson opened the meeting with some quotes from a letter written by Sir Bruce Keogh, National Medical Director at NHS England, relating to discussions that are currently taking place at NICE. Current NICE guideline recommendations relating to CBT and GET were referred to in this letter.

Professor Ian Charles of the Quadram Institute of Food Health, University of Norwich: Prof. Charles spoke about the important overlap between food and health and the role of the microbiome in helping to regulate the body’s immune system and the signalling systems that link the brain and gut. He explained how research is starting to provide new insights about possible causal mechanisms in diseases such as diabetes and obesity.

Dr Vicky Whittemore, Programme Director, National Institutes of Neurological Disorders and Stroke at NIH, USA: Dr Whittemore explained how the NIH (National Institutes of Health) operates and talked about how it funds research. There are 27 separate institutes and centres at NIH, each with a specific research  agenda focused on diseases or body systems and, as ME/CFS is an illness that covers a wide range of symptoms and body systems, it now has 24 different homes at NIH! NIH is also setting up a ME/CFS Data Management Co-ordinating Centre and arranging educational seminars on ME/CFS.

Professor Donald Staines, National Centre for Neuroimmunology and Emerging Diseases, Griffiths University, Australia: The presentation focused on the work that Professor Staines and his team have been doing at a molecular level on calcium ion channels and cellular signalling mechanisms that involve calcium ions. This is a process that could link in with some of the immune system disturbances found in ME/CFS. It is possible that disturbances in the way that calcium ions are behaving in ME/CFS could form part of the underlying disease process.

Professor Nancy Klimas, Director, Institute for Neuroimmune Medicine, Nova Southeastern University, USA, has put together a large multidisciplinary team, led by two ‘Blue Ribbon Fellowship’ medical students, who are concentrating on the genetic component, aiming to understand the genetic risk in ME/CFS and the possible role of gene mutations. This global study could help to provide a ‘genetic signature’ for ME/CFS and explain why some people recover from ME/CFS and others do not.

From the Karolinska Institute, Sweden, Dr Jakob Theorell’s research focuses on people who have immunodeficiency syndromes. In relation to ME/CFS, he has been looking at a specific part of the immune system orchestra called cytotoxic lymphocytes. These are cells that combat intracellular infections with dysfunctional abnormalities being reported in previous research studies.

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Fane Mensah, PhD student at University College London presented a summary of key points from a paper which has reviewed the immunology of ME/CFS. The most consistent abnormality to be reported in ME/CFS is a decrease in number and function of NK (natural killer) cells. Studies that have looked at cytokines (immune system chemicals) have produced inconsistent results. However, there is some evidence of changes in the cytokine make up in relation to illness duration.

Dr Jo Cambridge, Professorial Research Assistant at University College London, belongs to a well established research group at UCL that has a particular interest in drug treatment (rituximab in particular) relating to the depletion of a component of the immune system orchestra called B cells. The group has also been exploring how B cell depletion helps to modify the disease process in rheumatoid arthritis through removing immune complexes and reducing inflammation in the joints.

Professor Simon Carding, Leader in Gut Health and Food Safety Programme a the Institute of Food Research, Norwich Research Park introduced four PhD students who are looking at components of a research hypothesis that involves the gut.

Professor Mady Hornig, Associate Professor, Centre for Infection and Immunity, Columbia University Mailman School of Public Health, New York: Professor Hornig’s research focuses on infective, immune and toxic  stimuli relating to conditions that range from autism to ME/CFS. She has a particular interest in establishing how genes and maturational factors can interact with environmental triggers, leading to various brain disorders. Her ME/CFS research has concentrated on establishing whether there are immune system profiles/signatures that are characteristic of the disease and identifying infections that are linked to ME/CFS.

Professor Olav Mella, Dept. Director, Oncology, Haukeland University Hospital, University of Bergen, Norway: Professor Mella spoke on the current state of two separate clinical trials in Norway involving rituximab and cyclophosphamide, looking back at how rituximab, a drug that is normally used in cancer treatment, became a possible treatment for ME/CFS. As an oncologist, his interest in the use of this drug in ME/CFS occurred after three patients with lymphoma, who also had ME/CFS, noticed that their ME/CFS significantly improved whilst receiving rituximab.

Dr Ingrid Rekeland, Dept of Oncology, Haukeland University Hospital, University of Bergen, Norway: Dr Rekeland is investigating whether there is a metabolic obstruction in the pathway that creates glucose into energy inside the mitochondria and whether this could help to explain some of the key symptoms of ME/CFS and the rise in lactic acid production on exertion in some people with ME/CFS.

Professor Warren Tate, Group Leader, Biochemistry Department, School of Biomedical Sciences, University of Otago, New Zealand, opened his presentation by explaining that his research interest in ME/CFS research resulted from his daughter developing the illness at the age of 14. This followed an episode  of Epstein-Barr infection/glandular fever almost 20 years ago. He likened the cause of ME/CFS to a large jigsaw puzzle where we had only some of the pieces in place.

Professor Ron Davis, Professor of Biochemistry and Genetics, Stanford School of Medicine, California, USA, is also involved in ME/CFS research as a result of having a seriously ill son. He updated the meeting on his research that is looking at the molecular basis to ME/CFS, how this should help to increase both our understanding of the underlying disease process and how this information can then be used to provide effective forms of treatment.

We have made Dr Shepherd's full (16-page) conference report available as a download, which might make it easier for people with M.E. to read at their own pace.



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