Recording of Esther Crawley inaugural lecture on February 24

[Chrisb]

@Esperanza

I originally interpreted the statement that "Esther leads a team..." as a reference to her work within the university. You, perfectly reasonably, interpret it as meaning the MEGA team. Such ambiguity is, at best, unfortunate.

If there be no such "team" within the university the basis of any justification for leadership of the MEGA team must remain open to debate.

EDIT
As far as I am aware MEGA does not purport to be a prospective study into the treatment of CFS/ME and this must support the suggestion of a claim to lead a separate and distinct team studying adult CFS/ME.

 

[Esperanza]

@Esperanza

I originally interpreted the statement that "Esther leads a team..." as a reference to her work within the university. You, perfectly reasonably, interpret it as meaning the MEGA team. Such ambiguity is, at best, unfortunate.

If there be no such "team" within the university the basis of any justification for leadership of the MEGA team must remain open to debate.

Ha! Yes, I did interpret it as the MEGA team, probably becuase I really do NOT want the MEGA thing to go ahead, not in its current form, anyway...
I think EC probably did mean her Univ team...but ambiguity & fudging issues, statistics & detail in general, seem to be her hallmark. I think she may be delusional & actually believe the rubbish she spouts which, of course, makes her very dangerous indeed. Her obvious need to make everything all about 'her' - 'her family' , 'her career', 'her victimisation' 'her heroism' is very telling...Don't most inaugural lectures concentrate on the actual work of the person giving the lecture instead of being just one big ego trip through the family photo album?

 

[alex3619]

I suspect Crawley is misleading herself in that there are people who get better after a post viral illness which is what the Dubbo study showed.

It is generally accepted, and I think not even remotely disputed or controversial, that most people recover from post viral fatigue. Most of those do so in the first six months. Only very rare cases for post viral fatigue last up to five years.

ME is not post viral fatigue, or if it is its a type two, with almost zero recovery and additional complications. If you consider that most with ME who recover do so in the first year, then its likely many who have recovered will be post viral fatigue patients and not ME patients. Without a definitive diagnostic test the questions cannot be answered. Even the "experts" are left speculating.

 

[slysaint]

if those who campaigned against her worked with her we'd be ten years forward

Name one actual biological fact about ME that all of her 'years of research' has revealed

I think that both she and SW have adopted epidemiology as a means of giving scientific credibility to their 'research' but have made no attempt to back any of it up with hard quantifiable medical evidence.
The 'if you say it often enough it must be true' approach gets you nowhere .
eta: unless you are the 'researchers' in question

 

[alex3619]

The 'if you say it often enough it must be true' approach gets you nowhere.

It got them research funding, recognition, and in one case a Knighthood.

PS ... and political influence.

 

[lilpink]

I sincerely hope that both the MEA & MERUK will listen to INFORMED patient views on this matter & have the courage to make known their criticisms & leave.

So do I, so do many.

 

[lilpink]

The number of adults wanted for the MEGA Trial is virtually identical to the number that they already have 'psych' data from in the National Outcomes database, which EC manages. I have to assume they will use this combination of data to back up any psych theories that they claim for CFS/ME.

 

[Binkie4]

I am worried about the NICE guideline review. I understand EC was on the last review Committee. Seems a powerful role in that current medical practitioners have their hands tied by CG53.

EC strikes me as someone who would be very powerful in a group situation influencing/ shaping opinion/rebuffing opposing views.

Does anyone know who is deciding if CG53 needs reviewing, decision summer 2017. Is it a Committee, officers of NICE, are there lay reps as there would be in a full review? Informal decision makers?

After the release of the PACE data, getting CG53 changed seems imo to be the next big hurdle, and while we still have no biological treatments or indeed a biomarker, my fear is we could be vulnerable to reuse of the Pace rubbish.

 

[slysaint]

After the release of the PACE data, getting CG53 changed seems imo to be the next big hurdle

there ar e number of threads on this:
http://forums.phoenixrising.me/inde...ve-just-received-this-letter-from-nice.48205/

eta: if you do a search on nice (in titles only) there are a load

 

[AndyH]

Transcript as close as I could manage from the audio that was posted...
https://www.dropbox.com/s/30sxdaxhd8hcgt9/2017-02-24 EC Lecture.pdf?dl=0

 

[Binkie4]

@slysaint

Thank you for the link to the earlier discussion which I had forgotten about and will reread.
Still have no understanding on who is doing the review of whether we need a review?

 

[JoanDublin]

Transcript as close as I could manage from the audio that was posted...
https://www.dropbox.com/s/30sxdaxhd8hcgt9/2017-02-24 EC Lecture.pdf?dl=0

Sweet Lamb of Jesus pass me the sick bucket. I've never heard such pure and utter shite in my entire life

 

[A.B.]

It's just self promotion, disguised as wanting to help kids.

She runs a CBT clinic and therefore her concept of CFS is that of a condition that is common and easily treated because that is good for her career.

The real cases meanwhile are left without access to any treatment because CFS is after all, a mental health condition that can and must be treated with CBT. And if it doesn't work that surely means the person has some other disorder, perhaps pervasive refusal syndrome?

Her talk about biology and finding other effective treatments is just PR: she hates the Rituximab studies. Obviously because they don't fit into the narrative that CBT can treat the illness.

She has learned from Wessely and White to use criticism to her advantage: all the critics are silly and stupid. Which is quite effective at discouraging the real critics from speaking out.

The association between CFS, adversity and the like is probably because her case definition is rubbish and picks up many cases of mild depression. Which coincidentally respond well to a placebo treatment and make it easy to claim to be successfully treating kids.

 

[Chrisb]

Sweet Lamb of Jesus pass me the sick bucket. I've never heard such pure and utter shite in my entire life

Pass me the sycophancy bucket to catch the emanations of the pro-vice chancellor. Should not universities have contra-vice chancellors?

 

[user9876]

The real cases meanwhile are left without access to any treatment because CFS is after all, a mental health condition that can and must be treated with CBT. And if it doesn't work that surely means the person has some other disorder, perhaps pervasive refusal syndrome?

She is too arrogant to say it must have been PRS if someone doesn't get better in her clinic. Instead it was CFS and she has cured that but the stress of being ill caused PRS. She wouldn't like to think she made a mistake in diagnosis or failed to cure the problem.

 

[Chrisb]

"....and you know, the problem is that if you do kind of stuff, what happens is that people leave, you
know, researchers leave. Even, researchers looking at viruses they all leave."

This quote is taken from the transcript kindly provided by @AndyH Can anyone name a single researcher looking at viruses who has left the field as a result of threats or abuse from the ME community? It seems highly improbable. Lack of funding I could believe. She must think that this approach never did SW's career any harm.

 

[slysaint]

and you know, the problem is that if you do kind of stuff, what happens is that people leave, you
know, researchers leave. Even, researchers looking at viruses they all leave

so EC explain the recent upsurge in biomedical research for ME(?)

AND far from trying to put the real researchers off..............patients are largely funding it.

 

[Esther12]

she hates the Rituximab studies. Obviously because they don't fit into the narrative that CBT cantreat the illness.

Do we know that? I'd be surprised if she'd said anything like that. Worth trying to avoid making unsafe criticisms of people like Crawley, particularly when they can be used to try to discredit legitimate criticisms.

Transcript as close as I could manage from the audio that was posted...
https://www.dropbox.com/s/30sxdaxhd8hcgt9/2017-02-24 EC Lecture.pdf?dl=0

Thanks. Now we just need a copy of the slides! Looks to me like more evidence that Crawley is the biggest threat to progress patients face in the UK.

They said "it is not a secret process"... I wonder if that means that records of how it was decided Crawley should be made a professor are public record?

On the whole, children doing graded exercise therapy do less exercise to begin with, then they do more and they get fit and they get better. OK? It’s really not rocket science

Is there any good evidence that GET is useful for improving fitness?

Oh... no need for evidence, we've got some anecdotes:

Ah, another child. Ah, “flexible”; “It’s been really good”; “It’s stopped me being quite as lethargic”, funny that,
exercise will do that; a little bit anyway. “My fitness has improved”; “I think it’s really positive, yeah”.

Impressive stuff.

 

[A.B.]

Do we know that? I'd be surprised if she'd said anything like that. Worth trying to avoid making unsafe criticisms of people like Crawley, particularly when they can be used to try to discredit legitimate criticisms.

I inadvertently joined Esther Crawley's Patient Advisory Group last year, not knowing anything about her or PACE, after my teenage daughter collapsed with ME. I had ME myself twenty years ago, and her father has Ankylosing Spondylitis, a rheumatic auto-immune disease. It has always struck me how very similar many of the symptoms are, including the fatigue, which has kept him off work for several years at a time during his working life, and the up-and-down nature of the illness. Although I'm not a medic, I am an academic, and I was interested to meet Esther; when she claimed that most children and young people got better within 6 months, I asked her if she checked how well they were in the months and years after that. She swept away my question by saying that she clearly didn't have the funding to contact people after the end of the study. I thought this odd. My daughter felt better after 6 months, but much, much worse after 8. She has now been housebound for 18 months, and too ill to continue her education. I also asked Esther about the rituximab trial in Norway which I had read about in the New Scientist with real excitement - as my husband is on a similar immune-suppressant which has made a huge difference to his health, I could completely understand that this might be a breakthrough. In response Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology of the investigators involved, and suggesting that this was the general view of the scientific community. How interesting to discover later, then, that very similar aspersions had been made about her own work. As an academic under increasing pressures to get funding and grow my international reputation and evidence of 'impact', I can understand Esther's hard work to convince society of the effectiveness of her research through the media. I don't, however, forgive her for her ability to suspend her morals by dismissing all evidence which suggests that she is wrong. As Karl Popper pointed out, we should all be trying as hard as we can to disprove our hypotheses, as only then can we hope to prove them.
Source - http://www.virology.ws/2016/11/21/t...new-fitnet-trial-for-kids/#comment-3015192110

In general it is obvious that CBT/GET promoters don't like the biomedical literature. Most of the time they pretend that it doesn't exist.

 

[Esther12]

In general it is obvious that CBT/GET promoters don't like the biomedical literature. Most of the time they pretend that it doesn't exist.

I still think it's well worth being cautious, unless you have a direct quote from the person that fully supports the claim you're making.