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It's our first Tullerversary!

S

Sasha

Fine, thank you
Messages
17,863
Location
UK
It just passed and I didn't realise - it was on 21 October last year that David Tuller posted the first in his series of Trial by Error articles about PACE on Virology Blog.

Since then, the landscape has transformed. Scientists, clinicians and statisticians, thousands of patients and dozens of patients' groups have been emboldened and inspired to speak out about PACE. Now the data have been released, the reanalyses are shocking, the walls are crumbling, and David Tuller keeps on writing...

Thank you, David Tuller! :trophy::star::thumbsup:

Edit: Please support David's article by leaving a comment!
 
Last edited:
trishrhymes

trishrhymes

Senior Member
Messages
2,158
Excellent article. I've added a comment which is awaiting moderation.

Facebook has just reminded me that it's also the anniversary of the beginning of my path into enlightenment about the backstory of why ME sufferers are treated so badly.

Here's what I posted on Facebook exactly a year ago:

....................

'I’m reduced today to weeping rage followed by miserable depression. Why? I hear you ask. Look at this headline in today’s Daily Telegraph:
‘Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found’.
Now look at two key points from the medical paper in the Lancet this newspaper article purports to be based on:
For the 4 groups given graded exercise, CBT, pacing advice or just symptomatic medical treatment: ‘There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up’ in other words exercise and CBT are no better in the long run than doing nothing.
And the final sentence of the Lancet report: ‘We note however that in all of the originally randomised treatment groups some patients remained unwell at long-term follow-up, an observation that reminds us that better treatments are still needed for patients with this chronically disabling disorder’. So how can they headline ‘not a chronic illness’.
For all those who struggle daily to try to help family, friends, doctors and benefits assessors to understand the difficulties they face, this is a body blow. The people with power in the UK read the Daily Telegraph. That headline is going to do so much damage.'
.............

I made a complaint to the Press regulator, but of course got nowhere. @charles shepherd did manage to get an excellent response published, though unfortunately hidden away in the on-line edition, so you had to look for it, and I doubt many people saw it.

.............

Little did I know then just what a story of medical malpractice and political collusion lay behind this headline. I spent last December reading Magical Medicine by Malcolm Hooper, and was shocked to the core. I had read the PACE paper in the Lancet in 2011 and could see then it was poor quality research. I had no idea then of the story behind it.

Thanks to David Tuller and others, I now know. It's painful knowledge, but we need to know, and we need the word spread. That's why Tuller is so important.
 
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