Actions Archives

Category: Actions

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

August 23, 2021 1 Comment

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM). Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign the code for chronic fatigue

Where Does Your Donation Go?

August 20, 2021 No Comments

Do you ever wonder where your money goes when donating to your favorite charity? We certainly do! Why? Because we want to make sure that every gift we receive generates the greatest impact in our collective fight for research, medical education, and public recognition of myalgic encephalomyelitis/chronic fatigue syndrome. This is why we wanted to

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

August 19, 2021 3 Comments

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

Sign on to #MEAction’s response to flawed CDC review

August 2, 2021 14 Comments

MEAction Response to CDC #MEAction has released a draft response to the CDC’s flawed systematic evidence review on ME/CFS treatments. Sign our form by August 15, 2021 to have your name added to #MEAction’s response before we formally submit it as a public comment on August 16. We need to demonstrate strong community opposition in

TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS

June 18, 2021 1 Comment

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

Respond to the Patient Safety Commissioner role consultation

May 18, 2021 No Comments

Scottish Action Alert! Use your voice to make a difference and respond to this goverment consultation.

UK ME/CFS Priority Setting Partnership launches first survey

April 19, 2021 No Comments

This is an exciting opportunity to set research priorities for ME, and could be the next big step towards improvinging research funding in the UK.

2021 MillionsMissing announcement for the week of May 12th

Get ready for #MillionsMissing

April 8, 2021 2 Comments

We are gearing up for #MillionsMissing 2021! This year will be a week long event, from May 9 to 15, of action and activities to strengthen our community, and fight for recognition, research and medical education for myalgic encephalomyelitis (ME). Check out our website for the #MillionsMissing timeline of events, grab your t-shirt, and plan a local event! We

NIH & CDC leadership are failing people with ME/CFS

March 30, 2021 1 Comment

#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective

Investigating the impact of Covid-19 on ME – Survey

March 22, 2021 1 Comment

Please help #MEAction UK and #MEAction Scotland by taking part in this survey to find out the effect that Covid-19 has on people with ME. Take the survey We are working in collaboration with Action for ME to gather evidence on the impact of Covid-19 on our community. We have heard many stories from people