M.E., UK Research Ethics-Public Health Journalist Dr. David Tuller & Guests Nov 5 2019

Sly Saint

Sly Saint

Senior Member (Voting Rights)
upload_2019-10-11_16-40-35.jpeg
What happens when design flaws are discovered in U.K. ME/CFS research, and future treatments depend on ethical research?
About this Event
The SMILE Trial, The Lightning Process, UK Research Ethics & A Public Health Journalist

Research is essential to find out which treatments work better for patients and can find answers to things that are unknown, filling gaps in knowledge and changing the way that healthcare professionals deliver their services to patients. The ultimate aim is to improve the quality of life for people living with illness…… but

  • What happens when research flaws become glaringly evident and are challenged?
  • What happens when patients report harms from treatments based on research conclusions, yet the NHS carry on regardless delivering these ‘treatments?’
  • Should children be exposed to non-medically trained practitioners for ‘a powerful and magical program to help you unlock your natural healing abilities, which the U.K. Advertising Standards Authority has found such medical claims to be misleading and unsupported by the available evidence?’
  • Is the Lightning Process a safeguarding issue in children because "keeping secrets" is part of it?
MORE ABOUT THE SPEAKERS: David Tuller, DrPH, is a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health, which is part of the School of Public Health. He received a masters degree in public health in 2006 and a doctor of public health degree in 2013, both from Berkeley.He was a reporter and editor for ten years at The San Francisco Chronicle and served as health editor at Salon.com. He has written regularly about public health and medical issues for The New York Times, the policy journal Health Affairs, and many other publications. Since 2015, he has been investigating scientific, methodological and ethical problems with research on the illness, or cluster of illnesses, variously known as myalgic encephalomyelitis, chronic fatigue syndrome, ME/CFS or CFS/ME. His ongoing series on this issue, Trial By Error, can be found on Virology Blog, the science site hosted by Vincent Racaniello, a microbiology professor at Columbia University.The entire series can be found here: http://www.virology.ws/mecfs/

Dr. Nigel Speight is a semi-retired British doctor based in the North East of England who specialises in Pediatric ME/CFS and has been involved in fighting many child protection cases in which children with ME/CFS were at risk of being removed from their parents. He has acted as a voluntary paediatric medical advisor for many ME/CFS charities.

He features in the film Voices from the Shadows, a documentary about severe ME/CFS. He has been outspoken about the risks to children with ME/CFS being misdiagnosed as having a psychiatric condition.

Dr. William Weir, NHS Infectious Disease Consultant from London, will join the panel for the Q&A session after the main presentations.
Click to expand...

https://www.eventbrite.co.uk/e/me-u...st-dr-david-tuller-guests-tickets-75779964915

eta: good date for it! can't wait for the fireworks.:emoji_boom:
 
Should children be exposed to non-medically trained practitioners for ‘a powerful and magical program to help you unlock your natural healing abilities, which the U.K. Advertising Standards Authority has found such medical claims to be misleading and unsupported by the available evidence?’
Click to expand...
When you put it that way... yikes. To think that the entire British medical establishment is on the wrong side of this extremely easy ethical choice really emphasizes how absurd and unsustainable this situation is. What a stupid idea to give the LP a shot in a real trial, it only made it evident how morally bankrupt their entirely ideology is, especially how similar SMILE was to PACE. Hubris be thy fall.

Odds of a totally neutral that is only discussing the science media package from the SMC?
 
in England it seems most of the medical profession bends to the will of the politics rather than standing up for ethical treatment of patients . they only seem to be bothered about their pay and terms of service not the immense harm done to patients . I don't think medical establishments have ever been fit for purpose from a patients perspective .
 
@dave30th
re EC saying why they did the trial
I think more of concern is when she went on to say
“If the Lightning Process is dangerous, as they say, we need to find out."
so they hand the kids over to therapists with unrecognised qualifications, performing an unknown therapy without supervision.

(can't find the link right now but I think it might have been one of her radio interviews, or the SMC news briefing)

eta: coyne mentioned it also
https://www.coyneoftherealm.com/201...-of-quack-chronic-fatigue-syndrome-treatment/
 
Last edited:
Sly Saint said:
@dave30th
re EC saying why they did the trial
I think more of concern is when she went on to say
“If the Lightning Process is dangerous, as they say, we need to find out."
so they hand the kids over to therapists with unrecognised qualifications, performing an unknown therapy without supervision.

(can't find the link right now but I think it might have been one of her radio interviews, or the SMC news briefing)

eta: coyne mentioned it also
https://www.coyneoftherealm.com/201...-of-quack-chronic-fatigue-syndrome-treatment/
Click to expand...
That's a misrepresentation as well. No one's saying it is dangerous per se anymore than people are campaigning to ban, nay eradicate, sugar because it can be harmful in some circumstances. Have random people try it, nobody cares. It's as harmless as astrology in most circumstances. Completely disingenuous.

It's unfit for purpose, in addition to being ridiculous quackery built on pseudoscience and magical thinking when it comes to claims about being medically relevant. It is also specifically unadvised for ME, the same way peanuts are unadvised to people with peanut allergies. "Dangerous" is a ridiculous framing and Crawley understands that and is showing just how casual her and her colleagues are about lying and making stuff up to fit their needs.

It's the same thing with exercise, which is almost universally beneficial. Almost. Exceptions exist and they matter. Seriously this lot should simply branch out and become advisers for information warfare, they are masters at it, use it so casually.
 
You must log in or register to reply here.
Back
Top Bottom