E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

[AndyPR]

I don't log in to Facebook but if anybody feels inclined they could post a message:

The author of the comment 'Harmful Extremism' would do well to wake up to the fact that patients with ME are criticising certain research projects on the internet because the projects are either demonstrably very poor quality or apparently very poorly thought through (projected work). In other words they are bad science. I very much support these criticisms and admire the intelligence and tenacity of those making them. No good scientists are going to be put off by this. It might be a good thing if those doing poor science took note and reconsidered their approach.

Describing this critical activity as extremism is unwarranted and in my view divisive and insulting.

Professor Jonathan Edwards
Department of Medicine
University College London

Thank you Jonathan, I've posted your comment to Facebook with a link to your post here.

 

[Chrisb]

It is extraordinary that the same dreary allegations are so often made about "personal attacks waged on doctors, therapists, scientists, etc". I was quite surprised to see in @Daisymay 's recent "Travesty of science thread" that Wessely was making such allegations as early as 1994 in his Elliot Slater lecture. I suppose that by now his supporters might be expected to have learned how to deploy the technique for best effect.

By way of context and contrast it is interesting to read the unfussy, professional manner in which David Yeomans draws attention to the potential dangers of work in a psychiatric unit in this letter which I came across when looking for something else:

http://europepmc.org/articles/PMC1118514 Assessing aggression in Psychiatric patients,

One in twenty patients in a Middlesbrough unit was found to regularly carry a weapon. I wonder what the figure would be for the average ME clinic.

 

[CFS_for_19_years]

This should lead you to the post; scroll down to read Colin Barton's post:
https://www.facebook.com/permalink.php?story_fbid=1272965506094438&id=171411469583186

Ellen Goudsmit is there too.

 

[Wolfiness]

Do not get distracted. Focus on what's important: PACE has been exposed as fraud, and the CBT/GET empire is crumbling.

They are trying to bargain because they are weak. They are making a media push because they are afraid of losing control.

They are afraid of criticism. That's why they are attacking the critics again.

I'm worried that actually the FITNET media push is Crawley being seamlessly slotted in as White's heir and we haven't succeeded in changing the narrative.

 

[A.B.]

I'm worried that actually the FITNET media push is Crawley being seamlessly slotted in as White's heir and we haven't succeeded in changing the narrative.

It will probably take much more to change the narrative. We simply don't have the influence in the media that they do. If we had the ear of the media, we could expose all their lies and incompetence and their CBT/GEt empire would fall apart in months.

Crawley is also starting to show a bit more restraint. In her latest paper she kind of acknowledges that she can't claim to be studying CFS (but then she continues to confuse uninvestigated persistent fatigue with CFS).

White was clearly afraid of the PACE re-analysis, he published a post-truth style apology of PACE in The Guardian. He supposedly also paid Cochrane to do a re-analysis. There now exists a peer reviewed version of the re-analysis. This story isn't over yet. I think we just got distracted by other things (a few interesting biomedical studies, MEGA, Crawley). Advocates are again starting to think how to best let people who matter know what PACE really showed.

 

[ash0787]

I was a little rude to him, I don't like those corrupt people though.

You know whats interesting though, with the ME association supposedly being based within 5 miles of where I live,
the local GPs here can't even diagnose the illness accurately, I think I saw about 6 doctors at the local doctors surgery that were either uninformed / neutral, dangerously misinformed or just directly following the NHS guidelines and one doctor that I found recently that seems more familiar with it / supportive / understanding.

I looked up Creepy Crawley on google as I forgot exactly what she looked like and I noticed she is actually quite attractive, probably how she gets away with all of it to be honest.

 

[Large Donner]

White was clearly afraid of the PACE re-analysis, to the point he paid a newspaper to print some post-truth apology of PACE. He supposedly also paid Cochrane to do a re-analysis

Is there any truth in that?

 

[A.B.]

Is there any truth in that?

These are the rumors that I've heard. We will find out soon enough.

 

[ukxmrv]

It seems the person who commented "Harmful Extremism... .... " is one Colin Barton of the Sussex & Kent ME/CFS Society. Doesn't Sussex and Kent ME/CFS Society have a long history of supporting the psychosocial agenda and therefore obviously Creepy Crawley. He's an eejit. Somebody did address him.

https://www.facebook.com/andy.devereuxcooke?fref=ufi&rc=p

Yes, Colin Barton goes back a long way into the murky times of AFME and Barts collaboration and before.

 

[Sean]

I was quite surprised to see in @Daisymay 's recent "Travesty of science thread" that Wessely was making such allegations as early as 1994 in his Elliot Slater lecture. I suppose that by now his supporters might be expected to have learned how to deploy the technique for best effect.

Indeed. They don't want the 'harassment' narrative to be resolved. It is too convenient a smear and distractor.

 

[Snow Leopard]

It used to be that performances by my favourite bands/DJs would leave me most desperate to be well. Now it's the chance to go and ask awkward questions at a professor's inaugral lecture. Just one day of good health is all I'd need for so much fun!

Pfft.

When I get well, I'm going to become a famous DJ and name myself DJ Esther12 in honour of someone.

 

[user9876]

Is there any truth in that?

Its not really true. Cochrane wrote a protocol for individual patient data analysis and he paid for one of the meetings (from his QMUL research fund) and the PACE authors are also authors of the protocol. The protocol was published sometime ago and they have claimed it shows their results are good and they claimed it was an independent analysis. But the results of the Cochrane analysis have not been published and the analysis is not independent.

 

[ash0787]

so that doctor I said seemed supportive, after I explained why I wanted lots of drugs he said ' I think we need to try and deal with the ongoing problem though, have you tried contacting 'healthy minds' ? then when I mentioned the PACE trial he assumed that the criticism was based on nobody having tried to replicate the results, oh dear.

 

[SilverbladeTE]

"Time to tend the damage..."?
yes sure, easily done:

Completely neutral investigative group that patients can themselves check for bias etc, because like WE are the ones suffering not the doctors.
this group to include experienced police to check the network of alleged links and conflicts of interest, because if there ARE conflicts of interest this precludes fair science.
also, actual scientists of other disciplines completely outwith "medicine", as well as statisticians, to check for bad or fraudulent scientific practice and methodology

and if fraud is shown, arrest and trial of ALL the Biosocial bastards for complicity in genocide, mass murder, false imprisonment, fraud,
as well as "grievous/bodily harm", child abuse and torture (which may have their own categories in differing countries' legal systems)

this I think, would put an end to all the issues.
but hey that's just me!

 

[Barry53]

Just looking at ...

http://wames.org.uk/cms-english/201...stworthy-cochrane-review-of-exercise-for-cfs/

Results of the Wearden et al FINE trial were available to the PACE investigators when they performed the controversial switching of outcomes for their trial. This should be taken into account in interpreting Larun’s defense of the PACE investigators in response to a comment from Tom Kindlon. She stated:

You particularly mention the risk of bias in the PACE trial regarding not providing pre-specified outcomes however the trial did pre-specify the analysis of outcomes. The primary outcomes were the same as in the original protocol, although the scoring method of one was changed and the analysis of assessing efficacy also changed from the original protocol. These changes were made as part of the detailed statistical analysis plan (itself published in full), which had been promised in the original protocol. These changes were drawn up before the analysis commenced and before examining any outcome data. In other words they were pre-specified, so it is hard to understand how the changes contributed to any potential bias.

[My emphasis].

I find it impossible to believe that any informal analysis, and discussions of how things were panning out, did not take place during the trial and before any formal analysis was done (or owned up to). Given the dishonesty and corruption now known about, what are the chances (really?!) that some kind of early informal analysis did not alert them to how the results were going to look, according to the original criteria?

 

[SilverbladeTE]

There are none so blind as those who will not see....
Especially when money, being kept.in gravy by more bullshit studies, is at stake
And if PACE had been a negative outcome, their whole house of cards would come down

Frankly in such circumstances, criminal fraud, even murder have a tendency to occur, as history and Human Nature shows