The end of the road for rituximab?

Posted on 18 Apr 2019

We reported last year the disappointing news that preliminary results from the Norwegian randomised trial of rituximab were not showing any clinical benefit of the drug in people with ME/CFS. This was doubly disappointing for us at ME Research UK because we had recently awarded a grant to Prof. David Patrick at the University of British Columbia to use data from the trial to develop an immunosignature predicting individuals who would respond to...

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Retirement of Dr Vance Spence, the lamplighter

Posted on 8 Apr 2019

Founding Trustees Robert McRae (l) and Dr Vance A Spence (r) in 2010 marking 10th anniversary of foundation of ME Research UK Dr Vance Spence, a founding Trustee and Chairman of ME Research UK for the past 18 years, announced his retirement at the charity’s recent AGM. Although stepping back from his role as Chairman and Trustee, Vance will continue to be a member of ME Research UK’s Scientific Board, providing input and advice on the quality...

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Forward-ME Group Minutes – 13th March 2019

Posted on 4 Apr 2019

Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 13 March 2019 Present: Countess of Mar (Chairman); Carol Monaghan MP (Vice-Chairman); Hannah Clifton – Director M.E. Trust; Charles Shepherd – ME Association; Helen Dawes – Oxford Brookes University; Suzie Henson-Amphlett  – Tymes Trust ; Esperanza Moreno – ME ACTION; Gareth Tuckwell – ME Trust ; Christine Harrison – BRAME; Sam Bromiley – Action for ME; Sue Waddle...

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Forward-ME survey on patients’ experiences of CBT and GET

Posted on 3 Apr 2019

In January 2019, Forward-ME launched a survey to gather evidence on patients’ experiences of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), to feed into the ongoing Guideline review being undertaken by NICE. As part of this process, Forward-ME welcomed the opportunity to ensure that the views of patients were taken into account at an early stage. The focus of the survey was deliberately narrow, concentrating solely...

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Mitochondrial complex activity

Posted on 29 Mar 2019

Cara Tomas and colleagues from Newcastle University have recently published a report on mitochondrial function in ME/CFS, and this study is related to research on muscle fatigue they are currently pursuing with support from ME Research UK. The mitochondria are considered the power plants of the body, generating the energy needed to support life, and substantial evidence suggests that mitochondrial function is abnormal in people with ME/CFS. But...

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Chronotropic intolerance

Posted on 27 Mar 2019

Our heart rate normally increases when we exercise, but a new study from the University of the Pacific, in California, shows that this response is impaired in many people with ME/CFS. This phenomenon is known as chronotropic intolerance, and potentially provides further evidence of autonomic dysfunction in the illness (also seen in work by Prof. Newton in Newcastle). The authors suggest their findings also raise questions about the use of...

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