Friday 12th May 2006

Westminster

Hosted by Invest in ME

“Clinical Diagnosis, Research Trends and Educational Support for ME”

An impressive line up of key speakers made this a special high profile day in ME Awareness Week, and was planned to coincide with the birthday of Florence Nightingale as ME Awareness Day. Congratulations to the small team of “Invest in ME” a recently established national charity for ME who planned and hosted this event.

On behalf of ME North East Sheila and I attended this extremely interesting and informative day. A full agenda running from 9 am to 5 pm made it hard going for many, but worth the effort with almost all lasting the full day. Speakers included Professor Malcolm Hooper from Sunderland University, Dr Byron Hyde from the Nightingale Research Foundation in Toronto, Dr Bruce Carruthers from Vancouver – (principle author of “The Canadian Guidelines”). Professor Basant Puri from the Hammersmith Hospital London, and Jane Colby Executive Director of Tymes Trust - a former Head Teacher. All champions of ME in their professional roles. The audience was a comprehensive mix of health professionals, people with ME and their representatives.

The overall feeling from the day was:
- there is much being done in the name of ME,
- we are moving closer to a higher degree of awareness and understanding
- the campaigning and lobbying from all sources over the past years is beginning to show rewards
- there is still a long way to go and much we can all do to achieve fair understanding, recognition and treatment, not least in the field of biomedical research into the cause of ME.

Invest in ME are producing a DVD of the conference and we have already ordered our copy. You can find out more by visiting www.investinme.org

The opening speaker was Dr Ian Gibson MP for Norwich North who is leading the all-party parliamentary inquiry into ME research in the UK. He outlined the terms of reference for the enquiry, accepted he was taking on a challenging task, but he was prepared to bring all parties together under strict chairmanship. He agreed there was a huge amount of evidence to collect and acknowledged the important influence of patients and patient groups. He pointedly referred to the difficulties faced over Welfare Benefits and the need for The Institute of Clinical Excellent (NICE) to consider the Canadian evidence. He hopes to produce a report in July that will act as a catalyst to raise both the profile and funds for ME research. He said he was confident he would make progress (“nudging forwards”), that there will be no going back, but it may take consensus to achieve this.

Nb; Dr Gibson put written questions to the Secretary of State for Health, and they were answered on this day (12th May) by Ivan Lewis MP, parliamentary under-secretary at the Department of Health – the full questions and answers are reproduced on page 5.

Jennifer Elliott