NIMEA Medical Conference,
Lisburn, Co. Antrim,
8th September 2007.
Lisburn, Co. Antrim,
8th September 2007.
The Northern Ireland ME Association held a successful medical conference on 8th September. Present were paediatricians, GPs, hospital consultants, nurses, O.T.s, representatives from the Health and Education boards - and DLA medics.
Delegates were welcomed to Lisburn's riverside Civic Centre by the Lord Mayor - who has staff and family members affected by ME and Fibromyalgia. Doctors and visiting speakers got on famously. Generous catering was supplied ensuite, and attendees didn't leave the function room all day. Terry Kelly, NIMEA's benefits officer, was in demand, explaining the intricacies of DLA.
First speaker was Dr. Larry Martel, paediatrician at the Ulster Hospital, Dundonald. "I do not believe that ME is a psychiatric condition", he declared. "It is a physical illness". That set the tone for the rest of the day. There was no hard-sell of CBT and GET; no-one blamed the patients for being ill. Instead the conference got down to the serious business of what could and should be done for ME patients.
Second was Horace Reid of NIMEA, who since 22nd August had distilled 317 pages of new NICE guidelines into a 50-minute Powerpoint. These guidelines are not the mixture as before. The authors were practitioners rather than well-known ME researchers. NICE had its own definition of CBT, much of it good old-fashioned common sense, and none of it about "dictation of illness beliefs". The NICE brand of GET is not an imposed rigid schedule; it had built-in rest periods; and it comes with explicit warnings of adverse effects. NICE asserted that in ME as in other conditions, the patient's rights to consent and choice of treatment were paramount, and non-negotiable. NICE takes the view that manifold psychiatric hypotheses - remain hypothetical.
The audience rapidly warmed to Dr. William Weir, famous for his amusing presentation to Dr. Ian Gibson's parliamentarians, and respected for his long experience treating ME. Willy has a streak of Boris Johnston in him: shrewd, robust, and unfailingly polite. He cocked a satirical snook at the philosophical pretensions of the bio-psycho-social camp. "Postmodernism and Cartesian Dualism? It's all fiddlesticks." (He used a saltier phrase). "This stuff has no relevance to the real world!" Conference had already come to the same conclusion, and delegates now fell about laughing. Dr. Weir considers that the guiding principle of managing ME is common sense, and treatment can be left in the hands of a competent GP. "It's not rocket science."
Jonathan Kerr was to have been first speaker after lunch. But he came down with a last-minute bug, and was unable to travel. Instead he entrusted presentation of his latest research to Dr. Weir, one of his many collaborators. His findings, soon to be published, confirm abnormal immunological activation in ME patients. An array of genes governing immune responses are abnormally “switched on”. Better than that, he has now identified a number of clinically separate ME subgroups, each with its own genetic signature.
Dr. Noel Scott, liason psychiatrist in charge of the CFS Clinic at Belfast City Hospital, commented on preceding speakers. He echoed one of the key NICE findings - patients and doctors should stop quarrelling about imponderables, and concentrate on what could be achieved here and now. Dr. Scott's clinic is seriously under-resourced. His own role is unfunded, and his O.T. works part-time. Since April 2007 he has been unable to accept regional referrals from outside the Belfast area.
He was followed by Jayne Perkes, his Senior Occupational Therapist, who conducts group classes spread over 8 weeks. She prefers Graded Activity to GET. A survey of 33 patients in 2005-6 gave her a 90% satisfaction rating.
To wind up, NIMEA president Sylvia Bolton engaged delegates in a brainstorming session. Split into groups of three, they were asked for suggestions. One paediatrician took a supportive, rather than macho approach to the severely affected. Another was unimpressed with the efficacy of recommended treatments. The psychiatric delegation reflected on the damaging effects of mental health stigma. A DLA representative regretted the divide between ME doctors and patients.
Everyone deplored the lack of treatment provision. O.T.s said they were interested, but as things stood, there was no hope of them taking on this time-consuming condition. Two ME mothers, who were also NHS nurses, had come. Both had severely affected teenagers, and found NHS support was nil.
NIMEA identified many gaps in provision - for children, for the severely affected, and for patients distant from Belfast. NIMEA has long suspected that many of the severely-affected are not in touch either with the NHS or charities. They were dismayed to have this situation confirmed on Saturday.
A health board member had strong words of advice for the ME world - NHS provision would not increase until local MPs were alerted to the current parlous situation in Northern Ireland.
Around four pm delegates dispersed into the autumn sunshine. Dr. Willy Weir was last seen settling in front of a Rugby World Cup match, before his flight back to London.
Delegates were welcomed to Lisburn's riverside Civic Centre by the Lord Mayor - who has staff and family members affected by ME and Fibromyalgia. Doctors and visiting speakers got on famously. Generous catering was supplied ensuite, and attendees didn't leave the function room all day. Terry Kelly, NIMEA's benefits officer, was in demand, explaining the intricacies of DLA.
First speaker was Dr. Larry Martel, paediatrician at the Ulster Hospital, Dundonald. "I do not believe that ME is a psychiatric condition", he declared. "It is a physical illness". That set the tone for the rest of the day. There was no hard-sell of CBT and GET; no-one blamed the patients for being ill. Instead the conference got down to the serious business of what could and should be done for ME patients.
Second was Horace Reid of NIMEA, who since 22nd August had distilled 317 pages of new NICE guidelines into a 50-minute Powerpoint. These guidelines are not the mixture as before. The authors were practitioners rather than well-known ME researchers. NICE had its own definition of CBT, much of it good old-fashioned common sense, and none of it about "dictation of illness beliefs". The NICE brand of GET is not an imposed rigid schedule; it had built-in rest periods; and it comes with explicit warnings of adverse effects. NICE asserted that in ME as in other conditions, the patient's rights to consent and choice of treatment were paramount, and non-negotiable. NICE takes the view that manifold psychiatric hypotheses - remain hypothetical.
The audience rapidly warmed to Dr. William Weir, famous for his amusing presentation to Dr. Ian Gibson's parliamentarians, and respected for his long experience treating ME. Willy has a streak of Boris Johnston in him: shrewd, robust, and unfailingly polite. He cocked a satirical snook at the philosophical pretensions of the bio-psycho-social camp. "Postmodernism and Cartesian Dualism? It's all fiddlesticks." (He used a saltier phrase). "This stuff has no relevance to the real world!" Conference had already come to the same conclusion, and delegates now fell about laughing. Dr. Weir considers that the guiding principle of managing ME is common sense, and treatment can be left in the hands of a competent GP. "It's not rocket science."
Jonathan Kerr was to have been first speaker after lunch. But he came down with a last-minute bug, and was unable to travel. Instead he entrusted presentation of his latest research to Dr. Weir, one of his many collaborators. His findings, soon to be published, confirm abnormal immunological activation in ME patients. An array of genes governing immune responses are abnormally “switched on”. Better than that, he has now identified a number of clinically separate ME subgroups, each with its own genetic signature.
Dr. Noel Scott, liason psychiatrist in charge of the CFS Clinic at Belfast City Hospital, commented on preceding speakers. He echoed one of the key NICE findings - patients and doctors should stop quarrelling about imponderables, and concentrate on what could be achieved here and now. Dr. Scott's clinic is seriously under-resourced. His own role is unfunded, and his O.T. works part-time. Since April 2007 he has been unable to accept regional referrals from outside the Belfast area.
He was followed by Jayne Perkes, his Senior Occupational Therapist, who conducts group classes spread over 8 weeks. She prefers Graded Activity to GET. A survey of 33 patients in 2005-6 gave her a 90% satisfaction rating.
To wind up, NIMEA president Sylvia Bolton engaged delegates in a brainstorming session. Split into groups of three, they were asked for suggestions. One paediatrician took a supportive, rather than macho approach to the severely affected. Another was unimpressed with the efficacy of recommended treatments. The psychiatric delegation reflected on the damaging effects of mental health stigma. A DLA representative regretted the divide between ME doctors and patients.
Everyone deplored the lack of treatment provision. O.T.s said they were interested, but as things stood, there was no hope of them taking on this time-consuming condition. Two ME mothers, who were also NHS nurses, had come. Both had severely affected teenagers, and found NHS support was nil.
NIMEA identified many gaps in provision - for children, for the severely affected, and for patients distant from Belfast. NIMEA has long suspected that many of the severely-affected are not in touch either with the NHS or charities. They were dismayed to have this situation confirmed on Saturday.
A health board member had strong words of advice for the ME world - NHS provision would not increase until local MPs were alerted to the current parlous situation in Northern Ireland.
Around four pm delegates dispersed into the autumn sunshine. Dr. Willy Weir was last seen settling in front of a Rugby World Cup match, before his flight back to London.
