Advocacy Archives

Open Letter Demands Removal of Netflix's "Afflicted" – Sign the Petition

September 18, 2018 2 Comments

On September 18th, more than 40 writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. “We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions,” states the letter. “Its inclusion

Alphabet Soup – Your Guide to Current U.S. Actions

September 17, 2018 1 Comment

When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory Committee. While flawed,

Scottish Lib. Dems Pass Motion for ME, with Amendment

September 13, 2018 3 Comments

ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is now party policy. It is a hugely

How To Protest HHS with #MEAction

September 7, 2018 26 Comments

We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday. We will reschedule the Washington, D.C. protest for a later date. Our virtual protest on Friday,

Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!

August 26, 2018 No Comments

PETITION UPDATE (Tuesday, September 11, 2018) The CDC has posted an updated, competitive bid solicitation for the development of federal treatment guidelines for ME. The community outcry, and over 8,000 petition signatures, protesting the previous rigged, sole-source contract got the CDC’s attention. Yet the solicitation is still only open through Thursday, September 13 meaning interested applicants

Calling all Family, Friends and Allies – Join the Movement to Support People with ME

August 14, 2018 5 Comments

You may have watched your friend or relative struggle with myalgic encephalomyelitis (ME) unsure of what is happening or how you can help. #MEAction is supporting a new project called FFAME – Family, Friends and Allies for ME – to build a network of support for family, friends, caregivers and allies for ME to come

Watch Jen Brea's Powerful Award Speech from the 2018 NOW Conference

August 9, 2018 12 Comments

At the National Organization for Women (NOW) conference held this past July, #MEAction’s co-founder and voluntary executive director, Jennifer Brea, was awarded the Victoria J. Mastrobuono Award for Women’s Health for her work championing the cause of people with myalgic encephalomyelitis through #MEAction, and her documentary film, Unrest. The award is given annually to a physician, researcher, health

CDC Revises Its Information on ME

July 29, 2018 118 Comments

Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments below by clicking on the updated version of the article by clicking here: CDC website article text. Community-based changes to our recommendations are in red ink. In September 2016, I attended a meeting at the Centers for

NICE Guideline for ME: #MEAction UK Responds to Second Draft Scope

July 27, 2018 3 Comments

The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic Encephalomyelitis by October 2020. #MEAction UK has issued a response to the second draft scope for the ME/CFS Guideline. The scope is a document which will provide the framework for the new guidelines; providing feedback about

Building Allies for M.E. at Women’s Rights Conference

July 27, 2018 4 Comments

The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in which sexism has played a role in the disbelief, misdiagnosing and mistreatment of patients. (ME affects men, women and children but 75 percent are women.) The National Organization for Women (NOW) held a panel discussion about

Category: Advocacy