Trial By Error, Continued: Why has the PACE Study’s “Sister Trial” been “Disappeared” and Forgotten?

Valentijn

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A good article, especially if you haven't heard much about FINE before. Some typical BPS shenanigans were involved, to try to create a positive result. And it shows the origins of the Chalder Fatigue Scale scoring alterations made mid-trial in PACE.
 

Cheshire

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To be eligible for the FINE trial, participants needed to score 70 or less out of 100 on the physical function scale, the Medical Outcomes Study 36-Item Short Form Health Survey, known as the SF-36.
Yet a score of 60 was considered as "in normal range" in the PACE recovery study.
Not only do they think we are neurotic, but they consider us as dumb.

The PACE and FINE trials are so outragiously fraudulous, it's nearly unbelievable. The more I read, the more I'm appalled.
 
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Marco

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......I was surprised at the expectation that I might have shared the draft with the PACE investigators before publication. I would not have done that whether or not they had granted me interviews. This is journalism, not peer-review. Different rules.
I'm not sure that was a good idea. It opens up the defence of peer reviewed 'science' v 'gutter journalism'.
 

snowathlete

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I dont think any journalist would consider giving a pre-publication copy of an investigative report to one of the parties involved, for any reason, certainly not for review.

The fact they expected this just highlights the whole problem with their viewpoint: they think they should be able to control what is said about their trial. They want to control the narrative. how many other journalists have they put pressure on to share their writings pre-publication? And how many have changed what they wrote as a result of this pressure?
 

Advocate

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I'm not sure that was a good idea. It opens up the defence of peer reviewed 'science' v 'gutter journalism'.
I LOVED it when David Tuller pointed out the difference between journalism and peer review to the cheeky, paid public relations specialist for PACE. Tuller's carefully researched articles have no relationship to yellow journalism--the kind apparently practiced in newspapers like the Telegraph. Tuller's statement is the one I sent to family members, along with the article.
 
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viggster

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I don't think so - especially as this appears to be gutter "science" vs peer-reviewed journalism (my impression is that Tuller has knowledgeable people helping him check his material).
No investigative reporter would ever share his/her draft article with people outside of his or her editors. But a good investigative reporter (like David) does employ extensive fact-checking, which may include running certain passages or ideas past sources before publication. And David certainly gave the PACE people plenty of time and opportunity to respond - he sent them close to 100 questions that they ignored.

EDIT - David tells me he sent them many fewer questions than I state, but he did give them a chance to respond to the big thrusts of the article.
 
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Advocate

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No investigative reporter would ever share his/her draft article with people outside of his or her editors. But a good investigative reporter (like David) does employ extensive fact-checking, which may include running certain passages or ideas past sources before publication. And David certainly gave the PACE people plenty of time and opportunity to respond - he sent them close to 100 questions that they ignored.
They ignored almost 100 questions? I didn't know that. Thank you! (I'd love to know what the questions were.)
 

Esther12

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By the standards of well researched, thoughtful and accurate writing, Tuller is rather ahead of the curve compared to most peer reviewed CFS research.

I thought that this piece might be an easier introductory piece for people that his PACE work.
 
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Research 1st

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The fact they expected this just highlights the whole problem with their viewpoint: they think they should be able to control what is said about their trial. They want to control the narrative. how many other journalists have they put pressure on to share their writings pre-publication? And how many have changed what they wrote as a result of this pressure?
All very good points and easy to forget about when we're forced into a 'ohh yes it is, oh no it isn't' defensive response against the state approved nitwits. (By forcing patients to legitimise their 'ME' Vs 'CFS' the debate over the cause is nullified).

I wonder who benefits from this and who can manipulate the narrative from this using the media and other allies. How ironic, 'allies'.

The disease denial brigade harassing ME sufferers over the legitimacy of their disease, is the perfect environment, for the cause of the disease to hide in plain sight, because the cause is never scientifically debated, as long as:

The incorrect diagnostic criteria is used - check
The wrong patients are studied using psychological theories not disease signs (e.g Dysautonomia) - check
Appropriate levels of biomedical funding is denied -check
Applications for biomedical research, are turned down- check
The 2015 narrative becomes psychological or biological or a bit of both which can last another two decades -check
The disease is defined by a single symptom! - a symptom of subjective nature too - chronic fatigue - check.

To recap:
UK CFS cannot donate umbilical cord, but they need CBT/GET to reduce; fear of exercise'.
It's utterly preposterous the two government based rules exist in the same time frame, but they do.

Lets think why. And there's your answer. Didn't take long to work it out. The culprit, is novel immunosupressive agent + resulting immune status leading to seronegative pathogens, that do cause chronic fatigue initially, before the autoimmunity and brain damage/heart disease/cancer takes hold after decades of untreated infections - so then you have a different disease as it's more than one.

Better assays will change the future. Proving the symptoms of ME are associated to disease signs, and only in these patients with signs of disease, do you find the pathogens.

That's what is coming next, researching the people with inclusion criteria disease symptoms and signs of ME, rather than researching those without (diagnosis of exclusion), by proving they all share the novel pathogen, autoimmunity, but not the same co-infections .(The alleged irrational patients, will then seems rather sensible and clearly neglected as they insisted they were infected from day 1 and never recovered), as they do have intracellular infections and/or autoimmune diseases.

Hence those in high places, are able silence UK rational scientific debate and thinking, with very good effect, via the Chronic Fatigue of unexplained cause ruse. Something the average person would laugh at, as they feel tired before, during, and after work.

For UK medical propaganda to work effectively against ME, you must control the scientific section of the media with your version of the events using Psych CFS theory as the loud hailer.

This has been achieved. PACE is just a fingerprint of a prior agreement of how to manage an unfortunate embarrassment. Make the patients, the embarrassment to society, and then themselves, by inducing feelings of shame and guilt by denying their crippling disease as psychogenic and their responsibility to recover from.

CFS (designed by the CDC) does that beautifully + the negative media + the incorrect health policies. All in all a tremendous collusion of injustice and non science. What section of medicine could possibly know how to exploit that? Who would know the most about the human mind?
 
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Bob

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Very thorough and very interesting. On a par with his PACE article for quality and intrigue. I think it helpfully builds on the story of CBT and GET being inappropriate therapies for ME/CFS. So it moves the story forward slightly to suggest that this is a systemic problem rather than just a single trial. It suggests that the patient community, and science, is being manipulated (i can think of stronger words) by a group of researchers. As a casual reader, I think I would have concluded that something was seriously wrong and needs fixing. I also thought the patient testimony made the read all the more interesting. And, of course, the participants' negative opinions about the therapies were validated because the treatment failed to demonstrate clinical benefit. I hope this article gets read widely.
 

worldbackwards

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I also thought the patient testimony was very interesting, and made the read all the more interesting. And, of course, the participants' opinions were validated because the treatment failed to demonstrate clinical benefit. I hope this article gets read widely.
The patient testimony reminded me of my own experience - disbelief and running battles over everything. It's a stressful business.
 

SOC

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Medical Research Council. MRC policy on data sharing and preservation mrc.ac.uk/research/resea…pic.twitter.com/J5yhkmy7Bi



... unless the participant data comes from an ME/CFS study in which case researcher's conclusions are far more important than the raw anonymised data because the researchers KNOW the truth without the necessity of supporting evidence, especially if that evidence does not support their conconclusions.

Apparent MRC policy on data sharing