NEWS

We are writing to express our deep concerns about a segment featured on an episode of Dragons' Den, which aired on BBC1 on Jan 18th 2024. The episode in question showcased a product “Acu Seeds” that had a back story where the entrepreneur said she “believed they had aided in her recovery of ME/CFS”. This is a complex condition with significant impact on those who suffer from it, and currently no treatment or cure is recognised by the NICE Guideline on ME/CFS (NG206) [1]. Whil

The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care.

The U.S. Senate Committee on Health, Education, Labor & Pensions will host a hearing on addressing Long COVID, advancing research and improving patient care TOMORROW, Thurs. 18 at 10 a.m. ET. Watch the hearing and find more details HERE.  Angela Meriquez Vázquez, M.S.W. will be one of three stellar advocates testifying about her personal experience with Long COVID. Vázquez is the former President of Body Politic, a grassroots health justice organization at the forefront of Lo

#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS - and our core symptoms overlap - RECOVER’s research has major implications for our community. In the press release, we wrote about the great need to trial pharmacological drugs that have already shown promise in the M

Announcing #MEAction and Body Politic’s new collaboration: we are excited to announce that #MEAction will now host Body Politic’s advocacy work as a project of #MEAction. Many of you know that Body Politic’s support group has officially closed. This was a devastating loss to the community – we know so much of the Long COVID and ME community have mourned the shutdown of their wonderful space and continue to grieve this loss. #MEAction knew we must keep the advocacy work alive

Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the story, or from the response to post-infectious disease. Over the past several months, we have been busy telling our story about the #MillionsMissing to the press. We’ve sp

Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.