The Lancet has rejected a letter criticising the PACE trial that it invited from a large group of scientists. This decision was made after its editor discussed the matter with the study’s authors. Professor Vincent Racaniello, who led the letter, described the behaviour of Dr. Richard Horton, editor of The Lancet, as “unprofessional”. Racaniello, with
The #MillionsMissing are using Thunderclap to amplify our message. Between now and September 27, sign up here and promote your participation on social media. If you have any social media account, including Facebook, Twitter, or Tumblr, you can sign up and add your voice to that of other #MillionsMissing and allies. How does a Thunderclap
With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has: Spearheaded a petition to release the PACE trial data, garnering over 12,000 signatures. This was presented in the recent FOI request to release PACE data as evidence of peaceful patient involvement Launched the worldwide protest #MillionsMissing in 12 locations to raise awareness
#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting with Assistant Secretary for Health and Human Services Karen DeSalvo, and several meetings with congressional representatives. Continued work from the Congressional team at #MEAction has yielded fruit. [pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]Reps Zoe Lofgren
The name of Australian patient Alem Matthees has become familiar in the last few days since a tribunal ruled that Queen Mary University of London (QMUL) must release to him the anonymised raw data from the PACE trial. Matthees requested in March 2014 under the Freedom of Information Act. The decision is widely regarded as
Queen Mary University of London (QMUL) have issued a statement in response to Tuesday’s tribunal ruling that they must release anonymised PACE trial data to a patient who requested it under the Freedom of Information Act. The data would allow the calculation of main outcome and recovery figures using analyses that were specified in PACE’s
This is the third article in our series on the #MEAction RFI polling data. Click here for Part I and here for Part II. Clinical and Research Testing Perhaps unsurprisingly given Davis’s recent progress, metabolomics were what patients believed ME research needs to progress swiftly; two-day exercise testing was rated as less important, perhaps due
A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?
Columbia University – Center for Infection and Immunity has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work.
Today, August 8th, is Severe ME day. Today is a day of remembrance, when we think of those whom we have lost to ME. Severe ME Day is August 8th because that was Sophia Mirza‘s birthday. Her death in 2003 was one of the first in which cause of death was listed as myalgic encephalomyelitis.
