Advocacy Archives

Category: Advocacy

#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

Over 7K Sign #MEAction’s Response to Flawed CDC Review

August 16, 2021 1 Comment

Over 7K sign #MEAction’s response to CDC

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

Severe ME Artists Project — Gallery

July 29, 2021 11 Comments

A collection of works by artists with severe ME.

#MEAction CA—Article & Interview Published in Medical Board of CA’s Newsletter

July 15, 2021 No Comments

#MEAction CA’s advocacy work resulted in getting an article & interview published in Medical Board of CA’s newsletter!

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

Graphic of people sitting on stools having a discussion

Cochrane redux

June 16, 2021 No Comments

Get caught up! Start with Cochrane Analysis: What’s Here, What’s Missing, Conclusions What has gone on before Cochrane Reviews are well-known systematic reviews of studies in healthcare, and are internationally recognized — enough to be considered the last word in healthcare as far as some medical publications are concerned. In 2019, Larun et al. wrote

CDC releases flawed review of ME/CFS treatments for public comment

June 4, 2021 18 Comments

On May 16th the U.S. Centers for Disease Control and Prevention (CDC) published a notice of request for public comments on its systematic review draft report for diagnosis and treatment of ME/CFS which will remain open until August 16, 2021. You might not realize it from the above description, but this is the latest milestone

Congress Capitol Building pencil drawing

#MEAction urges Congress to hold NIH accountable

May 21, 2021 5 Comments

#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID. Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to