Presentations from the “Exercise and ME/CFS” evening in Bristol on Feb 5th 2014 are now online. Speakers are Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman.
Prof Mark VanNess from the Workwell Foundation explains how damaging aerobic exercise can be for patients with ME/CFS. Their 2 day testing protocol demonstrates an astonishing post exertional amplification of symptoms in ME patients; a hallmark symptom of ME. This damage to the aerobic energy system means that it is utterly counter productive to try to use aerobic exercise to improve health in these patients…
He also explains how patients can try to find a more appropriate way of managing their activities of daily living and exercise, by trying to avoid causing any worsening of symptoms and so allowing their bodies a better chance of healing. He explains about analeptic exercise, which means restorative; not causing relapse!
Dr Nigel Speight talks about some of the kinds of cases where he is asked to try to protect children from being mistreated by professionals who are misinformed about ME, or abdicating responsibility… He, more than anyone in this country, sees the worst cases; the cases where people are most ill and the cases where children are being mistreated and families threatened with having their ill children taken from them or forced to under go harmful treatment programmes. This video shows the anger and frustration with the current state of affairs that such scenarios evoke in a caring paediatrician. He describes his supportive and empowering management approach to the illness, which recognises that children are suffering a severe physical illness.
Erinna Bowman is part of the Cure ME team at the London School of Hygiene and Tropical Medicine. As well as explaining some back ground information about their work she covered some of the essential issues that have contributed to the confusion around the diagnosis and treatment of patients revealed by the previous speakers. She mentioned the wide variety of definitions and the wide predictions of prevalence resulting from such varied definitions… She explains about their new research projects funded by the USA’s NHI which will involve immunological, virological and gene expression analyses and describes the previous work on the biobank and its further development as a result of the new funding.