Exercise & ME/CFS event at Bristol Watershed
Exercise & ME/CFS event at Bristol Watershed.
Presentations from the “Exercise and ME/CFS” evening in Bristol on Feb 5th at the Watershed – with Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman following a screening of “Voices from the Shadows”.
More information about the “Exercise and ME/CFS; the evidence” event is in this post.
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.
The evidence from their research is so unexpected and contrary to accepted views of exercise and graded exercise, both in ME and in other illnesses, that many people actually find it difficult to hear and take on-board what he is saying. Fortunately you can go over what he says repeatedly and follow up the links on the Workwell Foundation website to watch or read other information.
Interestingly, he reflects on comments made in the film, explaining that these are consistent with their evidence from cardiopulmonary testing. 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 is the medical advisor or paediatric medical advisor for 5 charities, including the ME Association, TYMES Trust and significantly the 25 % Group who have been unable to find anyone more suitable to help in severe cases. 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. Another video with Dr Nigel Speight talking to Rob Wijbenga, which Josh filmed last summer, can be seen here.
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 issue 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. Clearly CFS to Mark VanNess is not the same illness described as CFS here! The Cure ME Team is obviously working with quite tight research criteria in comparison with the general NHS and NICE definition. 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.
Erinna Bowman, Prof Mark VanNess and Dr Nigel Speight answered questions, chaired by Sue Waddle
Bristol Watershed ‘Exercise and ME/CFS: the evidence’ event.
This event was hosted by Bristol North Fibro & ME/CFS Support Group with much appreciated funding from the Quartet Foundation to assist with costs. Help was also given by the ME Association and ME Research UK.