There was a very successful meeting for parliamentarians and decision-makers in the Parliament Buildings at Stormont on Tuesday February 4th 2014. The event, ‘ME in Northern Ireland: practice and research priorities’, was attended by around 100 politicians, researchers, health professionals, civil servants and patients, and it included a range of presentations. Dominic Bradley MLA opened the session, and was followed by a Welcome from Newry and Mourne ME and FM Support group Chair Martina Marks.
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.
Prof 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, Prof 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 Prof VanNess addressed in his presentation.
Our chairman, Dr Vance Spence, gave the distinguished audience a very concise overview of the research to date (with quotes from key documents), under the title “The science of ME/CFS: What do we know?” As his final summary slide said:
• Symptoms are serious, and chronic illness is common
• Prevalence is high
• Children can have similar abnormalities to adults
• Genetic factors play a part
• Infection is important
• Psychiatry is not the answer
• Neurocognitive abnormalities are prevalent
• Inflammation and immune activation are involved
• Endocrine (hormonal) abnormalities can be found
• Neurological abnormalities can be detected
In addition, there were presentations from Dr William Weir, who discussed the treatment and management of ME/CFS, and patient and campaigner Horace Reid, who highlighted the desperate need for more research and better health services.
The event was organised by Joan McParland of the Newry and Mourne ME and FM Support group, who gave the audience a very moving presentation from a personal perspective about the daily challenges faced by ME patients. In addition, she presented an important document for the Minister of Heath. Joan explained, “Clare Palmer also compiled an album of contributions from bedbound patients who emailed her their heartbreaking stories and pleas for help. She presented this to Jim Wells MLA, Assistant Chair of the Health Committee, to give to Minister of Health Edwin Poots who had originally agreed to open the event but had been called away at the last minute”.
As Joan continues, “I am very grateful to Dominic Bradley MLA (SDLP, Newry and Armagh) for hosting the event, and for the other MLAs who came along, including Mickey Brady (Sinn Féin, Newry and Armagh), Danny Kennedy (UUP, Newry and Armagh), Roy Beggs (UUP, East Antrim), Fearghal McKinney (SDLP, South Belfast), Jo-Anne Dobson, (UUP, Upper Bann), Kieran McCarthy (Alliance, Strangford) and Jim Wells (DUP, South Down), who took part in a Q&A session”. Other members of the audience included representatives from the Health and Social Care Board and Department of Health, Social Services and Public Safety; Professor Albert Cilia Vincenti and Clare Palmer, Academy of Nutritional Medicine; Dr Joe McVeigh, Lecturer in Physiotherapy, University of Ulster; Micheal O’Reilly and Declan Carrol, Irish ME Trust; and the Right Worshipful the Mayor of Lisburn, Councillor Margaret Tolerton.
After the meeting, patients and carers (with MLAs and Prof VanNess) held a silent demonstration outside Stormont, holding up a banner featuring pictures of all the ME patients who would have liked to attend but were too ill to do so.
You can see pictures from the event and the post-meeting demonstration on the ME Alliance Northern Ireland Facebook page, and a DVD of the event will be available soon.
Our thanks go to Joan and her team for putting it all together. Dr Vance Spence received a £1,000 donation from the group for ME Research UK’s research programme , and all attendees received a piece of the cake baked specially for the occasion by Joan and her colleagues!