Reprinted with the kind permission of Action for ME.
Almost every seat was taken at Wednesday’s Exercise and M.E./CFS: the evidence event in Bristol this week.
Along with our CEO Sonya Chowdhury, attendees included patients, carers and professionals including the ME Association’s Charles Shepherd; specialist physiotherapist Pete Gladwell (Bristol M.E./CFS service), Dr Phil Hammond and occupational therapist Anne Johnson (Bath M.E./CFS service) and Andrew Douglass (Somerset M.E./CFS Service).
The event began with a screening of a new 30-minute version of the moving M.E. documentary, Voices from the Shadows, introduced by Natalie Boulton, who made the film with her son Josh. This shorter version, edited down from the hour-long original, was made after Dr Montoya, Stanford Medical School, suggested it, with the intention of showing it to medical students.
After the film, Prof Mark VanNess spoke about the work he and his team are doing at the fatigue laboratory in the Health, Exercise, and Sport Sciences Department, University of the Pacific, California.
Working with people who have mild to moderate M.E., they are finding objective, rather than self-reported or subjective, evidence for the kind of fatigue that is specific to M.E.
Using cardiopulmonary exercise testing, Prof VanNess has proven that people with M.E.:
experience significant post-exertional malaise, though he prefers to call it post-exertional amplification of symptoms
have significantly impaired ability to generate energy from aerobic activity.
The key is that subjects are tested over two days. People with M.E. and healthy controls, all volunteers, spend 10 minutes on the treadmill on the first day, and then again 24 hours later. Results show that on the second day the metabolic function of people with M.E. has dropped by around 25%, such a marked decrease that, Prof VanNess told us, exercise physiologists protested that the machine must not be calibrated properly.
As a result of the data he has gathered, Prof VanNess has concluded that therapeutic interventions for people with M.E. should avoid aerobic exercise. Instead, they should be offered analeptic activity, intended to retrain the short-term (anaerobic) energy system to increase range of motion and improve functional strength. Crucially, he said, the ratio of activity to rest should be one to three, and physical therapists should be trained and experienced in this type of physical therapy.
Prof VanNess and his colleagues wrote an article for the CFIDS Chronicle, which explains these findings in more detail. He has also published numerous papers in peer-reviewed journals on his topic, including:
After a break, retired consultant paediatrician Dr Nigel Speight spoke about his management approach for M.E. in children and young people, and how important it is that the whole family be believed and supported. He told the audience that, during the past 12 months, he had worked with five cases of children with M.E. where the families are being subjected to the threat of child protection proceeding. The parents from some of those families were in the audience.
Erinna Bowman, part of the CURE-ME team at the London School of Hygiene and Tropical Medicine, gave the last presentation of the evening, about the UK M.E./CFS Biobank co-funded by Action for M.E. “The biobank has been designed as an open resource for the best researchers around the world,” she said, describing the work the team are doing, being almost half-way to the their target of collecting samples from 500 donors.
After the presentations, Sue Waddle, ME Research UK, chaired a Q&A session.
A film of the presentations will be available to watch online in a week or two, with links from the Voices from the Shadows website.