Covid-19 Resources for People with ME

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Last week in review: CNN, Long-Covid Seminar, Severe ME Day & more!

Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National Institutes of Health’s (NIH) response to long Covid and ME, we co-hosted and organized a seminar for those with long Covid with amazing organizations and activists, #MEAction UK wrote an open ...
James Strazza sits with guitar in one image, happy and healthy, and in the next image he is laying in bed very sick.

Let Us Honor the Most Severe in our Community Today!

Let us honor the most severe in our community today, Severe ME Day, Saturday, August 8th. Severe ME Day is a day of remembrance when we think of those whom we have lost to myalgic encephalomyelitis (ME), and focus on those living with severe ME. For those of you in ...

ADA 30th Anniversary–Stories Wanted

The 30th of the anniversary of the American Disability Act (ADA) is fast approaching--July 26th. As a way to celebrate this momentous occasion, we are looking to share stories of how the ADA has positively impacted the lives of people with ME.We want to honor those who fought hard to

Post-COVID research & clinical care must include ME/CFS

People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a subset of COVID-19 patients will go on to develop ME/CFS. Unfortunately, we are already hearing from many COVID-19 survivors around the world that they are continuing to experience debilitating symptoms for
DNA strands surround stamp that says Funded

£3.2million granted for largest ME/CFS DNA study ever

Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that

#MEAction Supports Health Care at Home Act

#MEAction is excited to announce our support of the Health Care at Home Act, which increases telemedicine opportunities during the pandemic. Telemedicine enables people with myalgic encephalomyelitis (ME) to access their healthcare professionals without leaving home, which can mean the difference between being able to access a doctor or not
Take ME Seriously #MEAction UK

NICE continue to promote defunct treatment for post-viral illness

At the end of April, #MEAction UK sent the National Institute of Health and Care Excellence (NICE) a six-metre-long card containing thousands of your names and messages describing the harm caused by graded exercise therapy (GET). NICE continues to recommend graded exercise therapy in their existing ME/CFS guidelines, whilst these
Scientists call for more European research on ME/CFS

Scientists Call for More European Research on ME

Editor’s Note: The below press release is from fellow ME advocates at the European ME Coalition (EMEC). The original EMEC press release can be found here. Check out #MEAction news archives for more about the origins of this campaign. Read about person with ME and advocate Evelien Van Den Brink’s
Person looking at news on smart phone.

#MEAction Puts ME into the Spotlight

Since the coronavirus pandemic hit, #MEAction has pitched news stories and worked with major news outlets to sound the alarm that COVID-19 patients are at risk of developing myalgic encephalomyelitis (ME) and other chronic illnesses. In the past month, #MEAction has worked to tell this story in The Washington Post,
APPG on ME AGM

APPG on ME – Next meeting scheduled

The All-Party Parliamentary Group (APPG) on ME will be resuming work on their report at a virtual meeting on Tuesday 16th June. This meeting will cover issues relating to children and adolescents with ME - including diagnosis, medical management, education and inappropriate social services interventions. There will be three presentations

Accessible Ways for People with ME to Get Involved in Racial Justice

Accessible Ways that People with ME can get Involved in Racial Justice#MEAction has always focused on empowering and supporting our community. We know that many people with ME are wanting to show support for racial justice and it is often difficult to know how to engage from home. Here are
UK ME/CFS Biobank CureME logo

The UK ME/CFS Biobank: a rich resource of samples and data

It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and
ME medical education module

New ME education module available for healthcare professionals

A new education module designed to teach healthcare professionals about ME has been released. Send the new module to your GP, using our email template. The module was created by the CMRC Medical Education group, led by Dr Nina Muirhead, and is available for free online. The Group includes patients,

Washington Post Editorial Says Some COVID-19 Patients Will Develop ME

The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term, debilitating illnesses, like myalgic encephalomyelitis (ME), in some patients. The editorial was written by former Washington Post reporter, Brian Vastag, and #MEAction co-founder, Beth Mazur, both of whom have ME. Many