Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
Does this count? No idea what this website (What Doctors Don't Tell You) is but looks like they used a press release from MEAction.
inews is mainstream (292,801 readers) and had two articles, though don't know if they made it into the print edition.Seems the coverage so far has been pretty lacking. Certainly nothing compared to the viral responses the proponents of GET/CBT get for their publications. I don't think I've seen even one major health website or mainstream news outlet. Maybe it would take a retraction to get that kind of response?
at least one of them was in the print edition.inews is mainstream (292,801 readers) and had two articles, though don't know if they made it into the print edition.
A tribunal has ruled that Queen Mary University of London must release data from a trial looking at treatment of chronic fatigue syndrome, which found that cognitive behavioural therapy and graded exercise therapy helped to alleviate the symptoms of the condition.1
The findings of the PACE (Pacing, graded Activity, and Cognitive behaviour therapy: a randomised Evaluation) trial, published in the Lancet in 2011,2 were questioned by some academics and patients, who argued that the PACE programme could harm patients.
In March 2014 Alem Matthees, a patient in Australia, submitted a freedom of information request to Queen Mary University of London, where some of the PACE researchers were based, asking …
The headline they used says a lot.....The BMJ: Tribunal orders university to release data from PACE chronic fatigue study
(behind a paywall)
http://www.bmj.com/content/354/bmj.i4614
But the lineThe headline they used says a lot.....
were questioned by some academics and patients, who argued that the PACE programme could harm patients
True, and at least they reported it, so far better than nothing, I'll forgive them this timeIs better then normal as they realize academics are raising concerns not just patients and at least here they use patients in a neutral way rather than 'activist' or worse.
The BMJ: Tribunal orders university to release data from PACE chronic fatigue study
(behind a paywall)
http://www.bmj.com/content/354/bmj.i4614
A post with the full text has just gone up in the Invest In ME group on Facebook, I believe it should be viewable even if you don't have Facebook - www.facebook.com/groups/5804522506/permalink/10153899767177507/
I forgive them even more now, one quote from the QMUL response but two good ones from @Keith Geraghty and @Jonathan Edwards - thank you gentlemen
Not taking chronic fatigue lying down
23 August, 2016 0 comments
An Australian man with chronic fatigue syndrome has forced UK researchers to release raw data from a highly controversial trial on the...
This site is accessible only by Australian-registered health practitioners. Click here to log in or register.
The findings of PACE were questioned by some academics and patients, who argued that the PACE programme could harm patients.
WowNot taking chronic fatigue lying down
Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
https://www.wddty.com/news/2016/08/...-all-in-the-mind-forced-to-disclose-data.html
Interesting to frame the 'recovery' claims in those terms. i.e. the simple logical conclusion that if you can be 'cured' by CBT then your illness must indeed be "all in your mind" rather than only "having a psychological aspect".WDDTY said:The £5m study concluded that both approaches could “moderately improve”, and that 22 per cent had been effectively cured—conclusions that some academics and patient groups questioned, as it suggested that CFS was ‘all in the mind’ rather than having a physiological aspect, as other research had discovered.
We need a go-to media puns thread if we really want to go mainstream. That would be really -ahem - aMEzing.Wow
You know you're finally being taken seriously when you get headlines with puns in them