All News Archives

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

June 23, 2020 1 Comment

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 hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.

NICE continue to promote defunct treatment for post-viral illness

June 17, 2020 3 Comments

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 are under review. Despite #MEAction

Scientists Call for More European Research on ME

June 10, 2020 1 Comment

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 journey to meet the EU

#MEAction Puts ME into the Spotlight

June 9, 2020 2 Comments

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, The Atlantic and Bustle! As

Members of the All Party Parliamentary Group

APPG on ME – Next meeting scheduled

June 8, 2020 No Comments

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 from: Dr Nigel Speight –

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

June 3, 2020 No Comments

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 the research of many others,

New ME education module available for healthcare professionals

June 3, 2020 3 Comments

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, professionals, charities and organisations such

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

June 2, 2020 No Comments

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 people infected with COVID-19 are

When POC Can’t Get a Diagnosis, Go Unseen

May 21, 2020 1 Comment

For decades, myalgic encephalomyelitis (ME) – also commonly called chronic fatigue syndrome – was erroneously portrayed as a white woman’s disease in the media. Black people were told they can’t get this disease, and went unseen and undiagnosed. Studies finally confirmed what the ME community already knew: the disease was targeting white, black and brown

Citizen science highlights non-recovery in COVID-19 patients

May 15, 2020 No Comments

Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights

Category: All News