NEWS

#MEAction joined a Maryland bill hearing to support House Bill 27 (HB 27), a proposal that would create a Maryland Long COVID Research Fund and establish a Long COVID Innovation Grant and Loan Program through the Maryland Technology Development Corporation (TEDCO).

Where we spend money reflects what we value. From ME research funding to Medicaid cuts, here’s why we’re speaking out, and how you can help.

Like you, we have been watching horrors unfold especially in Minnesota. We have been checking on our #MEAction Minnesota community and sending all our love and support. This situation is heartbreaking and sickening. We’ve heard your requests to find ways to help, so we’ve created a campaign with disability activist partners so you can contact congress, sign an open letter, and share on social media. We also highlight resources and groups on the ground that you can support. IC

Good news: Congress has extended Telehealth until January 31,2026 as part of a deal to end the government shutdown.This is not a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent. Join #MEAction in putting pressure on Congress to make Telehealth for Medicare permanent! Call your Member now using our call script, and tell Congress to stop messing around with your healthcare!For people with ME and Long COVID, Teleheal

This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for funding for the ME/CFS Research Roadmap: Secured a meeting with the NIH Director, and got the roadmap included in Congress’ draft appropriations language.2. Helping Minnesotans with ME/CFS and Long COVID apply for home care support by launching the Minnesota Home Help Navigation

With the upcoming UK election, It’s important that candidates are made aware of the challenges facing people with ME and Long COVID.

The U.S. Senate HELP Committee held a historic hearing about Long COVID last Thursday to discuss advancing research and improving patient care. #MEAction contacted the press to alert them to the hearing, and issued a follow-up press release sharing highlights from the hearing, and explaining the connection with ME/CFS. Our Scientific Director worked behind the scenes to advise a number of committee members on their testimonies.  There was a large show of support from Senators

We are writing this article to share some exciting news!On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise awareness and delivered by health allies. Advocates will return next session to deliver books to the remaining Senate offices.Myalgic

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February - and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased that 59 MSPs have given their support to the motion, and you can see if your MSP supported it on the Scottish Parliament

At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to follow up on that commitment. And we need you to let them know about it! Sue Webber, MSP for Lothian, has put forward a motion that asks the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME commissioned earlier this year - ​​including education of healthcare professionals and development of specialist services.Motions

As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and management of ME. The first step in the process was a Scottish stakeholder review, carried out externally by consultant Blake Stevenson. The report on the review was published in July and #MEAction Scotland supports its findings. We welcome the recommendations, which span healthcare education, service delivery and research. We’re extremely grateful to ev

After the recent RCGP Annual Primary Care Conference & Exhibition held in Glasgow, it seems appropriate to reflect on the impact of the conference on educating GPs about ME/CFS.

#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of ME patients in Scotland.