All News Archives

Australia to Launch its First ME/CFS Biobank and Patient Registry

August 16, 2019 1 Comment

Australian philanthropic trust the Mason Foundation will establish the first Australian national ME/CFS biobank and patient registry, with a $1 million grant. The grant consists of two components: the biobank and patient registry, and a research project which uses the samples stored in the biobank. This is significant news for the Australian ME/CFS community, and has been picked up by mainstream media.

Greater London Authority Unrest screenings to raise awareness of ME

August 16, 2019 No Comments

The Greater London Authority’s offices have held two Unrest screenings over the past few months to raise awareness of myalgic encephalomyelitis (ME). The screenings, held for staff, took place at Union Street and City Hall, and were part of ME Awareness Week and the #MillionsMissing campaign. Officers and staffers attended the two screenings, held in

Netflix’s “Afflicted” Cast Sues for Defamation

August 14, 2019 1 Comment

Four cast members of the Netflix series, Afflicted, have filed a lawsuit against Netflix and Doc Shop producers for defamation for portraying them as ‘hypochondriacs and/or malingerers.” The lawsuit indicates that the Doc Shop producers lied to the Afflicted participants “because the series was not a documentary in any sense of the word, but a

Gigi Update: Lewisham Hospital Removes Gigi’s Pain Medication, Leaving Her in Rising Pain

August 13, 2019 No Comments

An update on Gigi’s situation: Gigi’s family are launching an urgent appeal to find lawyers to bring their daughter, 17, home from Children’s Ward in Lewisham Hospital, London. Her family is desperate to bring her home, but the hospital has withdrawn Gigi’s pain medication, leaving her in steadily rising pain and making the move impossible.

#MEAction Welcomes Michelle Pinedo to our Board of Directors

August 9, 2019 No Comments

Listen to the article: #MEAction is pleased to welcome Michelle Pinedo to our Board of Directors. Michelle brings over 20 years of senior level experience in leading non-profit organizations to higher degrees of efficiency and impact. Michelle has seen the devastation of this illness up-close and considers herself a strong ally in our fight for recognition

Today, We Honor and Remember those with Severe M.E.

August 8, 2019 2 Comments

Today, we honor the millions of people around the world living in darkened rooms where sound and light and touch are beyond reach, where eating, bathing and standing have become impossible. Our community is fighting every day to bring hope, health and justice to people with myalgic encephalomyelitis (ME), and, today, we take time to

Researchers, Clinicians and Patients: Submit a Manuscript on ME to WORK Journal

August 7, 2019 No Comments

Researchers, patients and clinicians are invited to submit a manuscript for consideration in a special issue of WORK: A Journal of Prevention, Assessment and Rehabilitation (IOS Press), which will focus exclusively on the area of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Submissions are due Sept. 13, 2019. Scope The focus of this special edition is to examine how

Help ME/CFS Research and Clinical Care Research Win the Frontiers Spotlight Award! Download and View the Research!

August 6, 2019 No Comments

A series of 24 papers on ME/CFS called “Advances in ME/CFS Research and Clinical Care,” published in 2018-2019 in the online (open access, peer-reviewed) journals Frontiers in Neurology and Frontiers in Pediatrics, is in the running to win a $100,000 prize! The prize money must be used to fund a scientific conference on the topic.

Support Severe ME Day: Join the Silence Challenge

August 6, 2019 No Comments

August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe Myalgic Encephalomyelitis as well as a day of remembrance. August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME. One way you can participate and raise awareness for Severe ME Day is to

A petition cloaked in the respectability of research

August 5, 2019 No Comments

#MEAction UK has written a letter with regards to a survey that states it is to protect specialist CFS/ME services in the UK. We do not recommend people fill in this survey. It is written in such a way that it could be misused to support the existing treatment paradigm that harms people with ME.

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