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. The Workwell 2 day testing protocol demonstrates the 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, such as graded exercise therapy, to improve health in these patients.
The evidence from the Workwell 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 (for the severely affected), who have been unable to find anyone more suitable to help in severe cases. Dr Speight, more than anyone else 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 as the conditions loosely called CFS here in the UK! The Cure ME Team is working with quite precise research criteria in comparison with the general NHS and NICE definition. Erinna explains about their major new research projects funded by the USA’s NHI which will involve immunological, virological and gene expression analyses and describes their previous work on the biobank and its further development as a result of the new funding.
An Introduction to the film – Natalie Boulton
We finished the ‘Voices from the Shadows’ film two and half years ago and actually started it a couple of years before that, so most of the interviews are now quite old. Unfortunately they are no less relevant now than they were then, as Dr Nigel Speight will explain later.
The first interview we did, was with Simon Lawrence who founded and runs ‘The 25% Group’ for severely ill ME patients. It was difficult to film the interview and he was far more ill than we’d expected. One of the things he said, that I didn’t really want to hear, was that over the years he had seen many, many people progressively become more and more ill and many had died. He had lost many friends, he said, although, this was invariably put down to other conditions as being the cause of death.
Over the last 6 or more years I have been in contact on and off with a small group of young people, through my daughter, most of whom took part in the book Lost Voices from a Hidden Illness or the film. They mostly became ill as children or young adults. I have seen or rather heard of their progress over the years. Two of these, who were my daughters friends, are now dead. Another who I keep in quite close contact with has gone from being up on his feet and going out for short trips, to being completely bed bound, unable to get to the the toilet even with an electric wheelchair, unable to watch a computer screen or TV, unable to read and unable to have his hair cut or to shave – as you will see in his photo in the film.
This is a shocking film. But when we started to do the interviews we had absolutely no idea how shocking and frightening the accounts would be. I thought, from making the the ‘Lost Voices’ book that I had some idea of what was going on – but what we were told in interviews was a revelation. It became clear that these accounts were part of a coherent picture that needed to be told – The story of how physically ill children and young people, had been encouraged, persuaded, coerced, and even physically forced as a last resort, to conform to a view of this illness which is now proved to be utterly misguided and false – even though it is still being widely promoted.
This 30 minute version of the film contains 4 accounts of young people with ME. There is Naomi who tells her own experiences along with her mother Elizabeth and her brother and sister. Kay Gilderdale recounts how her daughter became so severely ill, Criona tells us what happened to her daughter Sophia. Sophia herself recorded some of the material we used. The child we refer to as B needs to remain unidentifiable and remains severely ill and traumatised by what was done to her. The room shown is not even her own room: we created it largely using my daughters possessions but I am told it is surprisingly similar. The account her parents wrote is read by an actor. Photos of other severely ill young people are shown while the ME specialists speak.
This film makes an impact on people, not because it is particularly well made, but because of the total sincerity and honesty of the people in it. We filmed them as witnesses, to hear what they needed to say, not to make an argument – and a tragic story emerged.
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.