A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, met at the request of #MEAction. Our UK coordinator, Espe Moreno, was present at this meeting.
The meeting is a further step towards the fight for ME equality in the UK as we continue to update MPs on recent scientific developments and keep up the political heat of ME in Parliament. We are lobbying the UK parliament and we are hopeful that another ME debate might take place before the end of the year. There is always lots of behind the scenes work to prepare for any future parliamentary debate. This was one such step.
David Tuller’s work includes thorough analyses of the PACE trial since 2011, highlighting its devastating effects on people with ME. Tuller has investigated and researched ME ever since and he’s traveled to the UK this month to meet with organisations, patients and government officials.
Carol Monaghan MP has led two crucial Westminster Hall debates on ME. The first one, ‘PACE trial and its effect on people with ME‘, took place in February 2018, while the second, ‘ME Treatment and Research’ occurred in June 2018. Both debates have immensely helped to raise awareness of ME amongst governing bodies, politicians and the wider public in the UK.
#MEAction would like to thank Carol Monaghan and David Tuller for their continued support and incredible efforts to support people with ME. Onward!
A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model