Hope 4 ME & Fibro NI PACE Trial Conference in October 2018

ME Advocates Ireland (MEAI) were delighted to be able to attend the Hope 4 ME & Fibro Northern Ireland event, The PACE Trial: - 'The Greatest Medical Scandal in History’, in the Mourne Country Hotel in Newry on October 2^nd, 2018, where the PACE Trial scandal was discussed by David Tuller and Brian Hughes. 

The PACE Trial, a controversial medical trial for the treatment of Myalgic Encephalomyelitis (ME), has been found to be 'not reliable' by a major study. The trial was described during a 3-hour Westminster Parliamentary debate, as 'One of the greatest medical scandals of the 21st century'.

David Tuller, DrPH, a senior fellow in public health and journalism at the Centre for Global Public Health, School of Public Health, UC Berkeley, and Brian Hughes, Prof in Psychology NUIG, Galway, Ireland, have investigated and written extensively on the subject of the PACE Trial (UK) and provided attendees with a unique opportunity to listen to lectures re aspects of their work, and re points on the importance of their investigations being available to decision makers, healthcare providers, academics, and patients. 

Brian Hughes raised legitimate questions about research methodology within clinical research and included a chapter on PACE while discussing aspects of his new book, ‘Psychology in Crisis’. Brian talked about the replication crisis in psychology, “Rampant Methodological Flexibility”, i.e. no standard methodology, and he explained how the PACE trial took advantage of this.

 ‘Bad science affects people’s lives. It’s a matter of shame to me’- Brian Hughes

David Tuller, who also eviscerated the Pace Trial pseudoscience in his lecture, with Christine Fenton, Joan Byrne & Moira Dillon of ME Advocates Ireland (MEAI). 

Joan Mc Parland, host of the event and founder of Hope 4 ME & Fibro NI

So, what has the PACE Trial ‘scandal’ to do with urgent ME patient safety issues?

The Hope 4 ME & Fibro NI charity provides answers to this question in a recording of the whole PACE Trial Scandal event. Please access the recoding here. 

Thanks to Andy McHugh and his son Jack for the above recording and providing this great opportunity for ME education and awareness raising.

The full transcript of the lecture by Prof Brian Hughes and David Tuller is available here

Members of ME Advocates Ireland - Joan Byrne, Christine Fenton & Moira Dillon with the wonderful Joan McParland at the event in Newry which was hosted by Hope 4 ME & Fibro NI on October 2nd, 2018.  

It was a pleasure to meet both speakers, as well as Joan McParland, Sally Burch, Andy Mc Hugh, Áine Hefferon, and many others at the event. 

Members of ME Advocates Ireland Joan Byrne and Christine Fenton with Prof  Brian Hughes

    

'Having been locked away for so long it's wonderful to get out and have a powerful motive for each excursion'

 - Christine Fenton