United Kingdom News
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APPG on ME: Biomedical Research Meeting
The All-Party Parliamentary Group (APPG) on ME held its first meeting on March 3, where biomedical research was discussed. Twenty MPs attended or sent staff to hear about the urgent need for biomedical research, following its inaugural AGM in January. Chaired by Carol Monaghan MP, the meeting was the first in a series that will
Send your stories for London #MillionsMissing
Exciting News for 2020! #MillionsMissing London is in Parliament Square on 13th May. London will play host to a major demonstration aimed at highlighting the plight of ME sufferers across the globe. London #Millions Missing is thrilled to announce that they are collaborating with the Florence Nightingale Museum in her bicentennial year, 200 years after
Invite your Doctor to learn about ME – Medical Education Event in London
March 11 Update: After thoughtful deliberation, we have made the difficult but necessary decision to postpone our Medical Education event in London, originally due to take place on April 1 at the LSHTM. We know how much this means to the community, and we did not make this decision in haste. The health and safety
Postcards to Doctors Featured Artist: Emily Lawton
We are so excited that the Postcards to Doctors Initiative sent more than 6,000 postcards to physicians across the United States! We’d like to take this opportunity to recognize one of #MEAction’s Postcards to Doctors amazing artists, Emily Lawton. After she was diagnosed with ME at the age of fifteen, Emily used the process of
Next Steps for the APPG on ME in the UK
#MEAction and the ME Association are both delighted that Carol Monaghan (MP for Glasgow North-West) has re-established a new All-Party Parliamentary Group (APPG) on ME. This is a parliamentary initiative for which the ME Association will be providing secretariat support. The purpose of the APPG on ME is to seek to improve health, social care, education
Another No from NICE – Take ME Seriously
As publication of new ME guidelines are delayed, NICE once again refuse to take action to mitigate the harmful recommendations that still stand in the existing guideline. Join us as we send them a giant card and tweet them so that they see the damage their guidelines have caused. Read more below and take action.
New APPG on ME for the UK – Meeting
Following the success of the last parliamentary debates on myalgic encephalomyelitis (ME), Carol Monaghan MP is reviving the All-Party Parliamentary Group (APPG) on ME. After well attended Westminster Hall and House of Commons debates with cross-party support, Carol Monaghan MP has decided that it is time to re-establish this APPG. The first meeting will be
How did your local ME service perform?
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
A Trial of ME – Elizabeth’s Story
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
UK General Election Guide Now Available
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
ME Services in the UK Not Fit for Purpose
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
NICE Called for Evidence: Read #MEAction UK’s Response
The National Institute for Health and Care Excellence (NICE) are re-writing their guidelines on ME. As part of this they issued a call for evidence relating to three topics. #MEAction UK has now submitted our full response, collecting studies, surveys and data from multiple sources. [maxbutton id=”23″ url=”http://www.meaction.net/wp-content/uploads/2019/10/MEAction-submission-to-the-NICE-ME-CFS-call-for-evidence-consultation.pdf” text=”Read the full submission” ] #MEAction