Saturday 8 December 2018

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 2nd, 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        

Thursday 6 December 2018

'Nobody is coordinating the care, there is no single consultant taking responsibility for the ME patients so they are left to sink or swim but mostly they fall between the cracks'.

‘Not only do you wait years to see a consultant, you wait more years for tests. People with chronic illness are pushed further & further away. Why are the vulnerable left to be so goddam vulnerable.' - Joan Byrne

ME Advocates Ireland (MEAI) represented people with Myalgic Encephalomyelitis (ME) and joined the Still Waiting Ireland Health Campaign to show solidarity at their Still Waiting Ireland National Health Demo which took place on October 6th, 2018. 

At the Custom House speakers from INMO, patient orgs, NGOs, Trade Unions, etc, talked about health inequalities in Ireland and numerous advocacy groups came together to protest Ireland's two-tier health service in Dublin.

ME Advocates Ireland (MEAI) have had a supportive relationship with the Still Waiting Ireland Campaign for the last two years. Some of us have attended their meetings over the months and watched them grow in numbers as many other patient groups, trade unions and TDs, etc, joined forces to demand better healthcare.

Still Waiting Ireland supported MEAI’s Dáil event in January 2018 when we had the presentation on ME in the AV Room there. Some members attended inside the AV Room, and again outside after the event where we were given a photo opportunity during their first Press photo shoot. They also supported us with our Visibility Event in May 2018, by attending the event, and offering help with our Press Release beforehand. It makes perfect sense that we would keep up the good rapport in our fight for the same thing, i.e. better healthcare in Ireland for all.

Joan Byrne of ME Advocates Ireland (MEAI) spoke of the need for health equality for all and the estimated 9-18K* people in Ireland who have ME. She spoke passionately about the need for the HSE to recognise ME and asked why this group of patients are so neglected.
Joan's full speech here

ME Advocates Ireland (MEAI) members feature in a short compilation with other health campaigners in an interview on O'Connell Street with the Irish Times at the demonstration. Joan Byrne's soundbites hit home why ME Advocates Ireland advocate on behalf of people with ME in Ireland. Link to Joan's brief interview here

* The prevalence estimate 9-18K people with ME in Ireland is based on International prevalence rates of 0.2-0.4%. Neither the Dept of Health nor the HSE do formal collation of numbers diagnosed with ME.

Top two images by Alex Art. Post and other images by MD