Category: Featured actions

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#MEAction Arrives in the Medieval Town of Med-Ed

Here’s a hearty hello from the Medieval Town of Medical Education!  Lords and Ladies,  We did it!… we got over $75,000 (£56,781) which means we have arrived at this new land on our Giving Adventure Map. I’m Laurie Jones, the Managering Elf, and I am going to tell you what awesome stalls await you at

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Tell your Doctor that GET is gone

The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME in England and Wales*. We need your help to tell doctors and other medical staff that the recommended treatments for people with ME have changed. We want to get the message out that there are new

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Choose your top ten ME/CFS research priorities – UK survey launched

Take the survey The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research. In partnership with the James Lind Alliance, the ME/CFS Priority Setting Partnership is launching their second survey today. The research questions in this survey are based on over 5300 ideas submitted

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Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

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NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

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Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.  Sign the petition On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad. But

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TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS

Help prioritise ME/CFS research by filling in this survey A major UK project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your responses must be in by Monday 5th July 2021. Find out more

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