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!
SOS: Save our Science
April 11, 2025
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People disabled by ME and Long Covid across the UK send out an SOS. It’s time to send out our SOS signal, if we want to have funded research. May 12th, is Myalgic Encephalomyelitis Awareness Day. On this day, the #MillionsMissing of people with myalgic encephalomyelitis (ME) gather to demand an increase in research and
4 thoughts on “#MEAction keeps up the political heat of ME in the UK Parliament”
I’m delighted so much is being done to increase awareness. From my understanding of the current NICE guidelines review we are not seeing the same amazing change in attitude and awarene. As you know the current NICE guidance already has, and will continue to have if we can’t ammend it appropriately, tremendous negative impact on the real lives of those suffering. It seems to me the UK is light years away from the recent research and development in ME/CFS seen in other part of the world and NICE even further away if not actively ignoring it. Please reassure me that we are indeed making significant inroads in influencing the current NICE review?
Yes getting NICE right is the key.
Well done thanks
Carol and David, you are trail blazers for recognition for all those who are suffering from ME. and your voice is vital.
Please keep fighting , for those that can’t.
Thank you both.
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