Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

Article in 'Alliance for natural health' which appears to be selling 'natural products' (ie they appear to be promoting anti 'drug based' treatments). I haven't read all their blurb but no doubt someone will!

Nevertheless, good that Jeromes piece is being picked up and particularly criticism of the PACE trial
However, taking on the System isn’t that straightforward. Even when you have accurate research data to back up your position it doesn’t mean that the media is on your side and your position will make it into the stark light of day. Such is the example of the PACE trial of 2011, which has been responsible for the treatment paradigm experienced by an estimated 250,000 sufferers in the UK.

Science fraud?
The psychologists behind the original £8M trial claimed that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) be the treatment options of choice. Despite a strong response from patient groups where many sufferers were bedridden or in wheelchairs, medical treatment guidelines in the UK were changed regardless. However, persistent patient activists managed to obtain the raw data through repeated freedom of information (FOI) requests. Interestingly Queen Mary’s University, London, spent £200K challenging those requests, but lost the legal battle. When the data was re-analysed in 2016 minus the original scientific fudging, the true figures were barely better than no-treatment and ranged from 3% to 7%. Shame on you Queen Mary’s. Chalk that up to a win for the people. But at what cost and was the struggle really necessary?

Health journalist Jerome Burne’s latest blog delves into the ME/CFS saga much more deeply, but we raise the issue here because it’s symptomatic of what needs to change in the medical/scientific paradigm. Not least of all the ‘pharmascope’ – an incredibly apt term coined by Jerome – that seems to be gifted to doctors in med school blinding them to conditions that don’t require drugs to treat them.

The fact that the PACE trial got through both the Ethics Committee and the Medical Research Council, then was resoundingly accepted by the UK’s National Institute for Health and Care Excellence (NICE) with fudged data, demonstrates the monstrous flaws in the System. Add that to the healthcare crisis arising from putting conditions that don’t fit the existing medical model into the psychosomatic silo and you touch the tip of the medical negligence iceberg that no one dares discuss.
Click to expand...
https://www.anhinternational.org/news/pharmascope-the-tool-that-may-have-blinded-your-doctor/
 
Wonko said:
Possibly, but the PACErs are in a bunker, in another country, busy peer reviewing their own papers on why fans are an artifact of disordered mental processes best treated by graded running around therapy.

So they probably won't notice.
Click to expand...
They just might be heading for extradition.
 
Sly Saint said:
Article in 'Alliance for natural health' which appears to be selling 'natural products' (ie they appear to be promoting anti 'drug based' treatments). I haven't read all their blurb but no doubt someone will!

Nevertheless, good that Jerome's piece is being picked up and particularly criticism of the PACE trial

https://www.anhinternational.org/news/pharmascope-the-tool-that-may-have-blinded-your-doctor/
Click to expand...


28 April 2019 at 6:49 pm

Thank you for this short pithy response to Jerome's excellent resume'.
'The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out…'

Oh,.... if only .....and... I wish! NICE is currently repeating the mistakes from the past in it's appraoch to the NICE Guidance Review for ME and CFS.
The ME Community is fearful of the likely hi jacking and outcome.

Meanwhile, the ME Community is pulling together to help fund the necessary challenge to all this nonsense- Trial By Error: Reporting on ME/CFS and Related Controversies https://crowdfund.berkeley.edu/project/14941
It has 2 days to run and to meet it's goal!

While Trial By Error began 3+ years ago as an in-depth look at the PACE trial, it has expanded to include other research from the GET/CBT ideological brigades and some of the controversies around the illness or cluster of illnesses known variously as ME, CFS, ME/CFS, and CFS/ME.

Please support this very worthy appeal please, because, 'we' ME and CFS patients and families are worth it!

(658.jpg Sorry mods if this is on the wrong thread! Cats!)
 
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I thought this was a further testimony to our "activism', '.......vexacious or not'!
I might ask permission to lift this and put it on our NHS Service blog and website!



https://www.anhinternational.org/our-work/activism/
Activism
“Change your life today. Don't gamble on the future, act now, without delay.” - Simone de Beauvoir

"Change doesn’t happen by itself. It needs activists, people who’re prepared to get out of their comfort zones and help others do the same. Being an activist – a change agent – is about being empowered and empowering others.

Powerful corporate and governmental forces dictate the ways in which our societies operate. They dictate the way most of the world’s food is produced and delivered to us and the ways in which health authorities and the medical mainstream propose that health and disease should be managed."
 
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