Joan McParland of the Newry and Mourne ME and Fibromyalgia Support Group, invited Dr Mark VanNess (Associate Professor of University of the Pacific, and Workwell Foundation, USA) to Northern Ireland to explain his findings on Post Exertional Malaise (PEM) in ME.
Dr VanNess gave two presentations. The main event, in the Long Gallery in Stormont, was hosted by Dominic Bradley (MLA) on Tuesday 4th February. This was well attended by both local politicians and front line medical professionals.
At the Stormont conference, Dr VanNess explained how the Workwell Foundation research clearly indicates that Graded Exercise programmes are harmful for ME patients. This, is contrary to the current UK medical guidelines issued by NICE, which still encourage rehabilitation through gradually increasing exercise regimes.
Dr VanNess explained how his investigations compared ME patients to de-conditioned controls, using Cardio-Pulmonary Exercise Tests (CPET). When performed on a single day CPET results show very little difference between the two groups, but when a repeat test is given on a second day, the ME patients fall dramatically behind. He said this difference could potentially be used as a diagnostic biomarker for ME, because results are not dependent on the effort of the individual, and so cannot be faked.
Dr VanNess further explained that aerobic exercise is harmful to ME patients. He admitted that it is not yet possible to say how the aerobic process fails to increase during exercise, but the fact that it does means that ME patients need to avoid over exertion. Indeed he recommended that patients use a heart rate monitor, so that activities could be kept below this aerobic exercise level. As a ball park figure he suggested keeping heart rate below 110 bpm at all times, although the critical number could be different for each patient.
Dr VanNess speaking at Stormont
Dr VanNess's presentation was very well received and the question and answer session opened up many issues for debate, including how the current situation for ME patients the UK is less than ideal.
Other speakers at Stormont included:
- Mr Dominic Bradley MLA, who hosted the event and welcomed everybody to the conference.
- Joan McParland of Newry and Mourne ME and Fibromyalgia Support Group, who gave a strong statement from a patient's perspective and called for urgent changes to be made to the medical approach to ME, including better medical student education. She strongly urged the acceptance of the Canadian Consensus Criteria for diagnosing ME as a priority.
- Martina Marks, who presented a cheque for £1000 to ME Research UK and spoke about the work of the Newry and Mourne ME and Fibromyalgia Support Group. She also thanked the many people who had helped make the event happen.
- Mr Horace Reid, an ME patient and advocate, spoke about the existing position regarding the services for ME patients in Northern Ireland - or indeed the lack of them - and pushed for change.
- Dr William Weir, who explained some of the controversy surrounding the name ME and the overlap with the condition Fibromyalgia. He talked about misguided exercise advice and the problems patients face getting a diagnosis.
- Dr Vance Spence, from ME Research UK, who spoke about current knowledge regarding ME. He emphasised that symptoms are serious, and that children can also suffer. He also made the point that psychiatry is not the answer!
The demonstration was made even more poignant by a huge banner, with pictures of the many severe ME patients in N.Ireland. In addition a folder of supporting emails from UK patients was handed to Jim Wells MLA and Deputy Chair of the Assembly Committee for Health. This folder was compiled by Clare Palmer in the days before the event.
Dr VanNess also spoke to patients in Newry on Sunday 2nd February. This presentation was aimed at helping patients and carers to understand the implications of his research in managing the restrictions of ME. He used the analogy of a credit card to explain how ME patients are slammed with huge interest rates when they exceed their low income energy budgets. He explained that keeping exertion levels to a minimum could help ME patients to avoid the high interest penalties (often called a "crash") and so get the most from their limited energies.
Both events were well attended, and patients and organisers alike were delighted to have their illness taken seriously, and to finally have their "exercise makes me worse" experience validated by research results.
Newry and Mourne ME/FMS Support Group would like to thank Dr VanNess for making the trip from California to speak here in Northern Ireland, and for helping us all to better understand ME. Perhaps there will be a run on heart rate monitor sales this week?
The demonstration outside Stormont.
Both photos taken by Jeanette Marley of ME Support NI.