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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Paywalled at the moment sadly.
Quite relieved, don't think I can read any more of this non-science at the moment.
Just come back from seeing friends, 2 of whom have known our daughter since birth and the other for prob over 15 years,
One of them says "Oh I hope this cloud will be lifted soon". You wouldn't say this about MS/RA/cancer.....
Then when I said I was really excited to be going to the International Biomedical Research into ME conference in June' the response was " Oh I didn't think they called it that any more!
So, much screaming and head banging later -after I get home, and virtual.; I rant on here as you will understand.
Thank you for being there.
Where's the emoji for gritted teeth when you need it.?!!!!!
Rather than acknowledging the flaws that others now see clearly, the investigators appear determined to persist with their current approach and resist any concession of error. Given this ill-advised and anti-scientific stance, they should prepare themselves for an even greater onslaught of questions and challenges from leading researchers, clinicians, and other experts, not to mention myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) patients and advocates. Their inadequate and non-responsive responses to tough but fair criticism have apparently served the PACE investigators well in previous exchanges, when few but Sir Simon Wessely were paying attention. That time has passed.
White also recently told The BMJ that it was unfair of critics to compare the high improvement rates from the Lancet paper with the lower improvement rates calculated from the protocol definition (Hawkes, 2016). “They’re comparing one measure with a completely different one—it’s apples and pears,” White said. Indeed it is. White and his colleagues took 5 million pounds in government funds and promised to bring back apples from the market. Instead they brought back pears, refusing to show anyone the apples they had rejected. Given the resources involved, it should not be hard to understand why people would want to examine those apples for themselves, to make their own comparisons with the pears and draw their own conclusions about whether their 5 million pounds were spent wisely. The investigators appear to view this public interest in accountability for public money as confusing or even offensive.
Its bloody brilliant!I've never seen so much swagger in a published commentary before.
an academic culture that values uncritical belief
The ME Association have posted this on Facebook, referring to these two new articles.Paywalled at the moment sadly.
At present, the Tuller and Vink pieces appear only as abstracts but, following discussions between the MEA and the journal just over two weeks ago, they should shortly by made Open Access.
Just in case you don't know this is a response by David Tuller to the PACEtrial nonsense
White and his colleagues took 5 million pounds in government funds and promised to bring back apples from the market. Instead they brought back pears, refusing to show anyone the apples they had rejected.
David Tuller is fast becoming one of my heros!!
https://www.ncbi.nlm.nih.gov/pubmed/27834232A New Treatment For Veterans In Need: Legal Assistance.
Tuller D1.
https://www.ncbi.nlm.nih.gov/pubmed/27834232#
Abstract
To confront nonmedical barriers to care, some Department of Veterans Affairs clinics are embedding lawyers in their health care teams.
Project HOPE—The People-to-People Health Foundation, Inc.
With the release of the trial data, it is no longer enough to have persuaded themselves, Sir Simon Wessely, and other adherents that their methods are sound and the findings robust. The larger scientific world is now scrutinizing both the study itself and the investigators’ defense of their work and has found their reasoning problematic and their intellectual position unsustainable.