Videos of the 3 presentations are now available on YouTube:
Prof Mark VanNess – A realistic approach to exercise & rehabilitation in ME/CFS;
Dr Nigel Speight – Paediatric ME/CFS;
Erinna Bowman – Establishing a biobank for biomedical research on ME/CFS
In addition, a short commentary, together with links to the videos, is also available on the Voices from the Shadows website.
It was full house at the Bristol Watershed Event, ‘Exercise and ME/CFS – the evidence’ on February 5th 2014. The main speaker was Prof Mark VanNess of the Pacific Fatigue Lab in California who discussed the role of exercise and activity management for people with ME or CFS, based on his own experimental work. The role of exercise in ME/CFS has been a source of great controversy for many years – widely accepted as beneficial by many healthcare professionals but questioned by many ME/CFS charities, and by patients who have personally suffered the adverse consequences of over-activity at a critical moment in their illness.
Dr VanNess has been involved in research with Staci Stevens and Chris Snell at the Workwell Foundation in California (& the Pacific Fatigue Lab) for many years. In 2010, he coauthored a very readable review which outlined the research findings in patients and the possible role of exercise in ME/CFS. Given the evidence that ME/CFS patients have ‘aerobic energy system impairments’, the authors concluded that “Exercise interventions…must be carefully customized to reflect the unique needs of each individual…Therefore, we advocate a training approach in which initial therapeutic activities are short duration, low intensity, and directed toward specific contributing impairments in body structures and functions…”. More recently, in 2013, Dr VanNess and colleagues published a intriguing scientific paper. Using a 2-day Cardiopulmonary Exercise Test (CPET) protocol, they found that their test could objectively document post-exertional malaise (PEM), the most commonly recognized symptom in ME/CFS. In essence, it showed that people with ME/CFS were unable to reproduce their Day 1 performance on Day 2, and the ‘statistical classification analysis’ suggested that the test had a 95.1% accuracy and so had potential as a diagnostic biomarker (see the paper’s press release). It was this test, and the need to use exercise wisely and with caution in people with ME/CFS, that Dr VanNess addressed in his presentation.
Mark’s talk followed a showing of a 30-minute version the film ‘Voices from the Shadows‘ which detailed the shattering effect of severe ME. Other speakers included Dr Nigel Speight who described the challenges involved in diagnosing ME/CFS in children, and Erinna Bowman of the London School of Hygiene and Tropical Medicine who gave an interesting insight into the work of the UK’s first ME/CFS Biobank. The meeting was chaired by Sue Waddle, Vice-Chair of ME Research UK, who was also compère for the lively Question and Answer Session at the end.
A big thank you to Natalie Boulton and the Bristol ME and Fibromyalgia Support Group for organising this positive event, which raised awareness of ME/CFS and the need for scientific research.