United Kingdom News
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The UK ME/CFS biobank paves the way for bigger and better research
On ME Awareness day this year, 12th May, the London School of Hygiene and Tropical Medicine (LSHTM) opened the UK ME/CFS Biobank for business, with blood samples available from 300 patients now, and there will soon be samples for over 200 controls. The ready availability of samples for large numbers of well-characterised patients and controls
Rehmeyer makes statisticians’ “jaws drop” over PACE
Science writer Julie Rehmeyer presented a critique of the PACE trial to North America’s largest gathering of statisticians in Chicago earlier this week. Her talk was titled, “Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE trial”. Rehmeyer explained to the 200-strong audience some of the problems with the trial, including
Global: RSVP for #MillionsMissing around the world!
Want to get involved, but aren’t sure how to proceed? Here is a living document you can use to determine where protests are happening near you, how to register, and who to contact to learn about the #MillionsMissing protests happening around the world. Canada Elizabeth Sanchez and Scott Simpson : [email protected] Germany Daniel Hattesohl: [email protected]
Tuller slams “terrible” PACE in podcast
Dr. David Tuller has provided an overview and update of his work criticizing the PACE trial in a podcast interview with Professor Vincent Racaniello on This Week in Virology (TWiV). Dr. Tuller, of University of California, Berkeley, published a series of damning critiques of the study on Professor Racaniello’s Virology Blog, starting with a lengthy article
QMUL spend £250,000 on PACE data tribunal
Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal concerning the release of anonymised data from the PACE trial. Their statement was made in response to a query made under the Freedom of Information Act by Mr. John Peters. QMUL paid £160,000 to Mills &
N. Ireland: Chasing Competent Care and #MillionsMissing protest
Hope 4 ME & Fibro Northern Ireland ran an ambitious and exciting conference on Monday 6th June in The Stormont Hotel, Belfast. The conference, “Chasing Competent Care” delivered a strong message calling for change to the currently inadequate care situation for ME and fibromyalgia patients in Northern Ireland.
#MillionsMissing Meets With Government Officials
In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands: better research funding, better physician training, and government oversight for ME/CFS. In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices: Senator McCain (AZ-R) Lindsey Graham (SC-R) Dianne Feinstein (CA-D) Tammy Baldwin (WI-D) Cory Booker
Belfast: Make your voice heard at tomorrow's #MillionsMissing Protest!
What is Chasing Competent Care? Hope 4 ME & Fibro Northern Ireland have organized Chasing Competent Care as part of a campaign to improve medical care for the thousands of ME and fibromyalgia patients in Northern Ireland. The conference will be tomorrow, Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards
#MillionsMissing in the News
The #MillionsMissing protest gained worldwide attention in the form of national and local press, including an excellent piece by Rivka Solomon that was first picked up by STAT, a national publication, and then by Business Insider and The Week. London’s protest was covered by The Evening Standard; and several local radio programs, including BBC Bristol,
Speeches from the front lines of #MillionsMissing: L.A. Cooper
Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change For M.E. Change For Us. We are middle representatives of this global movement; Melbourne kicked things off at 12pm their time (which is around 2am, 3am GMT, I believe) and Canada and USA follow us later
Support the #MillionsMissing in Belfast and Bergen
Belfast, Ireland and Bergen, Norway will be joining their voices to the #MillionsMissing protest this June. In Belfast, shoes will be displayed at the Chasing Competent Care conference on Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards Road, BT4 3LP Belfast. The shoes will be displayed down the side of
2016 ME/CFS conference season opens
The Invest in ME conference in London on Friday, 3 June is the first of three major ME/CFS conferences this year and there are indications that patients may be able to access live updates or recorded presentations from all three. Some audience members attending the Invest in ME conference are expected to report live on