Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

Barry said:
Is that definitely so? A feasibilty study paper published before it morphed into the main trial? Even if there was not one actually published, the way the results had trended would have been known, especially as EC was so closely involved, as has been reported elsewhere - DT?
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Tuller detail how participants from the feasibility study (that was used to justify changing primary outcomes away from the school attendance at six months outcome which gave a null result) appear to have been used to provide data for the full study: http://www.virology.ws/2017/12/13/trial-by-error-the-crawley-chronicles-resumed/
 
Esther12 said:
"the primary outcome measure change was made, and reported, before results were collected."

Results had been collected, just not all of them. I think that falls rather short of 'perfectly true'!
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It's the old Eric Morecambe and Andre Previn joke. 'All the right notes but not necessarily in the right order.' Having spent some time in the witness box being cross - examined I have learnt how elastic the term truth could be - if one were so inclined.

But I think what you say is perfectly true.
 
Esther12 said:
Yeah - in case of interest, here's the feasibility paper: https://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
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Thank you for the link @Esther12. It is self evidently not true that she made the change to main measure before she collected data, as half the data was justification for her change.

This double speak and use of half truths is very reminiscent of Prof Crawley's use of a waiver of ethical approval for one service evaluation to justify lack of ethical approval for a new screening study, or her transforming a letter from someone at Bristol to someone at Stanford into a legal 'cease and desist' letter to Proff Tuller with the implication it was supported by the Police. Prof. Crawley's understanding of truth is so elastic as to destroy any credibility of any project or venture she is involved with.
 
Peter Trewhitt said:
Prof. Crawley's understanding of truth is so elastic as to destroy any credibility of any project or venture she is involved with.
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Presumably Prof Crawley will spin this and the related threads here as concerted harassment.

It can be hard to be objective, Prof Crawley may represent all that I see as bad and harmful in the mistreatment of ME in the UK and it is hard not respond imteperately to what appears to be medical abuse, however I now try to think through every comment I make, and ask do I feel that I could confidently repeat them in court of law.

There is also a purpose to such threads beyond venting emotion and even beyond just sharing information. They help develop an improved collective understanding that can be used to feed thought out criticisms into the academic debate and help people with ME make more considered responses both individually and collectively.
 
Jonathan Edwards said:
It's the old Eric Morecambe and Andre Previn joke. 'All the right notes but not necessarily in the right order.' Having spent some time in the witness box being cross - examined I have learnt how elastic the term truth could be - if one were so inclined.
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Lawyer: Is it true Mr Blissett that you have often shot birds?

Me: Yes... but with my cam..

Lawyer (interrupting) : NO further questions.
 
Barry said:
If ever there was an example of lying by omission, that is it! Something I've observed many times from EC in the past.
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Just thought I'd clarify that part was not a direct quote from Crawley: "In response, Crawley said "all the outcomes were collected as planned, but children didn’t like our recommended primary outcome, school attendance, so we used disability." She added that the primary outcome measure change was made, and reported, before results were collected."

I wonder what her exact words were.
 
Esther12 said:
Just thought I'd clarify that part was not a direct quote from Crawley: "In response, Crawley said "all the outcomes were collected as planned, but children didn’t like our recommended primary outcome, school attendance, so we used disability." She added that the primary outcome measure change was made, and reported, before results were collected."

I wonder what her exact words were.
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Thanks. I wonder if she would be able to state that the primary outcome measure change was made, and reported, before any results were collected?
 
Peter Trewhitt said:
Presumably Prof Crawley will spin this and the related threads here as concerted harassment.

I now try to think through every comment I make, and ask do I feel that I could confidently repeat them in court of law.

There is also a purpose to such threads beyond venting emotion and even beyond just sharing information. They help develop an improved collective understanding that can be used to feed thought out criticisms into the academic debate and help people with ME make more considered responses both individually and collectively.
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I absolutely agree. This open discussion forces one to consider and reconsider exactly what it is that is wrong. Dr Crawley cannot spin this discussion as concerted harassment because it is ordinary people expressing realistic and justified concerns. Moreover, she would have to explain why a professor she knew as a trainee, who has a reputation for speaking his mind but being pretty fair, would be expressing such concern. She would have to explain why the aspects of the Lightning Process revealed in the Buzzfeed article are consistent with it being a reasonable thing to try first on children. People beyond her comfort zone are beginning to be puzzled. I think the time for spin is over.
 
Jonathan Edwards said:
Moreover, she would have to explain why a professor she knew as a trainee, who has a reputation for speaking his mind but being pretty fair, would be expressing such concern.
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She won't say it like that, she will say you were turned against her by lying patients and propaganda hence your no longer a reliable person (or something to that effect) and that her (fake) results vindicate her
 
Alvin said:
She won't say it like that, she will say you were turned against her by lying patients and propaganda hence your no longer a reliable person (or something to that effect) and that her (fake) results vindicate her
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But everyone that knows me knows that I do not get turned against people by patients and propaganda.
I am a law unto myself. And if someone in high places happens not to know me they will not have to look far to find a man (or woman) that does.
 
Jonathan Edwards said:
But everyone that knows me knows that I do not get turned against people by patients and propaganda.
I am a law unto myself. And if someone in high places happens not to know me they will not have to look far to find a man (or woman) that does.
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Most people choose a position by how intuitive something sounds to them and their introduction to the topic and any past knowledge. Then defend it by whatever means they prefer. Only some look for more information or the facts and make an unbiased judgement call. She has a nice intuitive sounding package of lies that many people fall for.
I commend anyone who knows almost nothing about ME/CFS and hears "technical information" about it from her and can see through that but i have learned through dogged experience that many do not dig for the truth, they make a quick judgement call then go from there. When we get to the point where fact checking changes minds and purposeful lies are reliably filtered out by the scientific process we will have made major strides in human progress.
 
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Alvin said:
When we get to the point where fact checking changes minds and purposeful lies are reliably filtered out by the scientific process we will have made major strides in human progress.
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I agree.
The problem is, for most people they have no reason to suspect it's not true.
Scientists are almost given a free pass when it comes to fact checking, i bet it wouldn't cross most people's mind to even doubt that what the scientist is saying, never mind to go away and fact check it.

There are some exceptions obviously, climate change deniers and the like, but a scientist being harassed whilst doing her best for sick people: really? tell me more....

Or, they get upset when its called psycological, it's a symptom infact, so best not call it psychological: ahh OK that makes perfect sense.
 
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