In light of an oncoming wave of people experiencing post-viral complications and potentially post-viral ME, telling our story is more important than ever. “I would expect that people who have Covid-19 symptoms quite severely, of those, I would expect about 10% to have fatigue-like syndromes after 6 months, given current evidence.” – Professor Chris Ponting,
Hi everyone! Time for an update: We have super important news! The Committee on Petitions is preparing a resolution on ME! This is the first-ever resolution on ME in the EU and if adopted, this means a great leap forward towards our goal of attaining funding for biomedical research on ME. It is planned to
Ingebjørg Midsem Dahl has severe ME, and has written a book about pacing called, “Classic Pacing for a Better Life with ME.” She attributes her slow but steady improvement from being severe to now only housebound to following her own advice on pacing, and from various medical treatments, such as treatments for secondary infections. There
On Thursday 19th December, 2019 the Scottish Parliament’s Public Petitions Committee met to continue its consideration of #MEAction Scotland’s petition, PE1690, which calls for a review of treatment of people with myalgic encephalomyelitis (ME) in Scotland. Appearing before the committee to give evidence were Jeane Freeman, the Scottish Government’s Cabinet Secretary for Health and Sport,
Earlier this year #MEAction UK wrote, distributed and analysed a survey in response to The National Institute for Health and Care Excellence (NICE) releasing a call for evidence as they rewrite the ME guideline. Our full report from that survey found that ME/CFS services in the UK are not fit for purpose. Results identified that
This is me, my story, I am one of the millions missing. I may not look ill to you, but if you see me, it will be because I am having a ‘good’ day because I am well enough to be able to get dressed and leave the house. The rest of the time I
The UK is set to go to the polls on 12 December 2019. #MEAction UK has prepared a guide ahead of the General Election with information on how to register for voting, different ways of voting (postal, proxy, etc), information about candidates and tips on raising awareness about myalgic encephalomyelitis (ME) with candidates. Make your
Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the success of the petition that asks for the EU to fund biomedical research on ME. So many people helped out by writing to their MEPs, translating documents, making phone calls, sharing the news and signing the
A recent survey conducted by #MEAction UK found that UK specialist myalgic encephalomyelitis (ME) services are not fit for purpose. Areas investigated included: Management strategies Experience attending a clinic Cognitive behavioural therapy (CBT) Activity management [maxbutton id=”23″ url=”http://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf” text=”Read the survey report here” ] The survey was conducted to provide evidence to the National
Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate in a statement of principles and values as well
