Hi,
I found this link on the Cleveland Clinic CME (Continuing Medical Education) regarding how they teach doctors about ME/CFS - I was horrified - so I had to post...
http://www.clevelandclinicmeded.com/online/casebased/decisionmaking/chronic-fatigue/case9.htm
Elisa
It's not often that you see the words "chronic fatigue syndrome" on the New York Times front page but there they were. The title of Julie Rehmeyer and David Tuller's op-ed piece on the PACE trial, "Getting It Wrong on Chronic Fatigue Syndrome", was highlighted there in bold for about half a...
Nice piece from Australia on how one patient upended the PACE study....
From the article
http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386
I just want to cry or punch something. I can't decide. Maybe I will do both.
PACE is doubling down. I fear that unless or until the pathology of our illness is found we will never be believed and we may never get proper funding. They and Lancet care more about protecting their reputation at...
The issue at stake was a big one. It asked whether changes to the original protocol of the PACE trial ended up stacking the deck.
It was easy to see how they might have; some of the recovery criteria were so weird as to seem ridiculous. The changes in the studies protocol, made it possible...
MEAction reported today that after reviewing three days of testimony a UK tribunal panel ordered the Queen Mary University of London (QMUL) to release anonymized data to Alem Matthees, an ME/CFS patient. QMUL had appealed an earlier decision by a commision to release the data. A further appeal...
Many people know that Julie Rehmeyer has chronic fatigue syndrome (ME/CFS), but not many people probably know that she's also an award winning journalist with a speciality in statistics. Rehmeyer has written op eds on ME/CFS for the New York Times and several pieces on the PACE trial.
Julie...
I heard this is good!
http://hwcdn.libsyn.com/p/d/f/5/df529d5b0d9712c7/TWiV397.mp3?c_id=12033720&expiration=1468271296&hwt=de594c4bf77f3325c8762575e21e0bc1
University Spends Big Bucks To Lock Down Data
The University behind the PACE trial is fighting hard to ensure that no one gets a look at the raw data of the PACE trial. ME Action revealed that the Queen Mary University of London (QMUL) has spent over $300,000 (250,000 pounds) on responding to...
What a tour-de-force. The PACE controversy is complex and has many layers but Jennie Spotila lays out where we are with it in easy to understand fashion in her latest blog. One of her absolute best..
From the blog
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