Wednesday 22 August 2007

NI MEA Initial Response to NICE Guidelines on ME/CFS


22nd August 2007

The NICE (National Institute for Clinical Excellence) has today issued its guidelines on the care and treatment for those with ME/CFS.

This is the NI MEA's initial response:

" The Northern Ireland ME Association is disappointed that these new guidelines bring us no nearer a cure for this common and debilitating illness, and that so few management options are being offered to NHS patients.

The NICE guidelines are welcome to the extent that they further confirm the validity of this emerging illness, and that NHS staff of all grades have now been given detailed instructions for its management.

Also welcome are stipulations that all long term patients should be referred to dedicated specialist clinics; that all children with ME should be cared for by a paediatrician; and that severely affected patients who are housebound and bedbound should receive intensive support in their own homes.

Unfortunately, the NHS in Northern Ireland is poorly equipped to implement these new national guidelines. The ME Clinic at Belfast City Hospital is chronically under-funded; as from May 2007 it can no longer accept referrals from outside Belfast.

In March 2005 The chief Medical Officer in Belfast assured the NI MEA that NHS provision for ME patients in Northern Ireland would be reviewed once the NICE guidelines were published.

The time has now come to deliver on that promise.

Friday 10 August 2007

Technical Problems with NI MEA Website

The Northern Ireland ME Association official website at http://www.nimea.org/ is currently experiencing technical difficulties and we are doing all we can to rectify this as soon as possible.

The problems include adding new information to the site, and the website blog has been deleted until all problems have been resolved.

Please feel free to use this NI MEA blog spot in the meantime, though the NI MEA would make clear that any views expressed by participants are not necessarily those of the Association, and anyone participating is asked to maintain a normal standard of decency and responsibility to others.

Thank you.

Wednesday 8 August 2007

Major Medical Conference on 8th September 2007




N I

M E A


The Northern Ireland ME Association (NI MEA) would like to let all Medical and associated Professionals know about a Major Medical Conference taking place on Saturday 8th September 2007. The Venue is: Lagan Valley Island Centre, Lisburn. It is an all-day event, starting at 9.00AM. Admission is FREE, and refreshments and lunch is also provided.


* Please note - this conference is for Medical and associated professionals only*

This event is being sponsored by "Awards For All"


Our Guest Speakers are:

  • Dr William Weir FRCP (Lond) FRCP (Edin); Consultant Physician and Hon Senior Lecturer (School of Medicine) Royal Free Hospital, London. Dr Weir's posts have included Honorary Senior Lecturer in Clinical Tropical Medicines and he has held various medical posts including Cardiology, General Medicine and Nephrology. Dr Weir's main clinical interests are Treatment of Severe Malaria; Imported Infections; Chronic Fatigue Syndrome (ME); Diagnosis of Occult forms of TB and he ran an outpatient CFS/ME Service between 1987 - 2000. His current major research interests are the Clinical Manifestations of Chronic Fatigue Syndrome and Immunological Mechanisms in Chronic Fatigue Syndrome.

  • Dr Jonathan Kerr BSc; MD; PhD; FRCPath. Dr Jonathan Kerr was born in Northern Ireland and qualified in Medicine from Queens University. He is Clinical Senior Lecturer in Inflammation and Honorary Consultant in Microbiology at St George's University, London. Dr Kerr has worked as a Microbiologist in Belfast, Manchester and London. His interest in ME/CFS began during a study of paraovirus B19 infection, when he showed that a percentage of infected cases developed ME/CFS which persisted for several years. He is currently the principal investigator in a research programme on ME/CFS at St George's. This involves development of a diagnostic test using mass spectrometry, analysis of human and viral gene expression.


  • Dr John Gow MIBiol; CBiol; PhD. Professor Gow is currently the Director of the Centre for Forensic Investigation at Glasgow Caledonian University. Before that he was Senior Lecturer in the Department of Neurology at University of Glasgow & southern General Hospital, Glasgow. He worked with Professor Peter Behan in that department from 1990 until Prof Behan's retirement in 2001. Professor Gow has had an interest in ME/CFS since 1990 and has published more than 20 papers on the subject. He carried out the first whole-geneome DNA microarray assay on patients with CFS/ME and produced a complete gene signature for CFS/ME. His Research department is currently developing a diagnostic test for CFS/ME.

  • Dr Noel Scott MRCP; MRCPsych;FRCP. Dr Scott is a Consultant Psychiatrist at Belfast City Hospital. He studied medicine at Queens University and was appointed to BCH in 1981 with special responsibility for Psychiatry of Old Age, south Belfast sector. It was here that he quickly established the first Psychogeriatric Service in Ireland. His interest in ME/CFS started in the early 1990's when he was asked by Physician colleagues to see patients with the illness at BCH Tower Block. He decided to visit the ME Clinic in Romford, Essex, run by Professor Leslie Findley. Following this visit he resolved to set up a service in Northern Ireland for those with ME/CFS along similar lines. Following his Pilot Service in 1997/1998 the CFS Service began in 1999. it remains the only facility in Northern Ireland for patients with ME/CFS - Dr Scott is in exploratory talks with the NI MEA on a project to expand the CFS Service throughout the Province.

  • Dr Larry Martel FRCP. Dr Martel was born in the USA, and attended Brown University where he qualified in 1967 and went on to attain a Masters in Medical Sciences in 1969. He obtained his Doctor of Medicine degree at Harvard University in 1971 and from there started his initial training in Paediatrics at the Children's Hospital Medical Center in Boston from 1971 - 1974. Dr Martel is currently the Consultant Community Paediatrician with Down and Lisburn Trust, and the Ulster Hospital Trust, and his special areas of interest include children with chronic illnesses, developmental delays and ADHD. His is also the Paediatric Advisor to the NI MEA and has been involved with several cases of moderate to severe ME in children and young people in NI.

In addition to our guest speakers, we will also have in attendance:-

Dr Sylvia Bolton, BSc, BA, MA (Ed) who is the Education Advisor to the NI MEA. Dr Bolton specialises in Special Educational Needs. She will be very happy to answer any queries that any of the delegates may have in relation to school/college and the affects on education posed by ME/CFS.

Mr Terry Kelly. Mr Kelly is an Information Officer with Disability Action, the leading Welfare Charity in the Province. He acts as the Welfare/Benefits Advisor to the NI MEA and has assisted many of our members in relation to Benefits claims etc, and will assist any GP who may wish to find out more in relation to Patient Benefits Forms.

Mr Horace Reid will also be making a presentation on behalf of the NI MEA in relation to the NICE Guidelines, which are due to be published later this month (August). The NICE guidelines on ME/CFS is the biggest development in relation to this illness in the past 5 years. Mr Reid will be outlining the implications the guidelines will have on ME/CFS patients and NHS Staff.

We would urge any Medical Professional - including Medical Students - to attend this conference, as it will not only give more information on the illness itself, but provide all the current developments in Bio-medical research. Places are limited. If you would like further information, or wish to reserve a place, then please contact:

Jo Calder; Northern Ireland Administrator at:

Information Line (028) 90 439831 (24 hours)

email: jo@nimea.org

28 Bedford Street Belfast BT2 7FE