David Tuller: My brief encounter with Prof Crawley

[CFS_for_19_years]

EC also stated that she has found that when she Skypes the children that she finds it difficult to get them in view as they seem to hide elsewhere in the room.

She commented on the surprising discovery that children apparently don't like using skype with her.

Wonder if this is happening?:

Or maybe children have an instinct for wanting to head from evil people - the same way one's dog or cat runs away (or growls at) an evil stranger.

 

[TreePerson]

@Countrygirl Your account is really very funny!! Or would be if it wasn't at the same time horribly depressing.

It's terrifying that she can talk such complete and utter crap but by including phrases such as "gold standard treatment" an audience of presumably intelligent people are completely hypnotised.

I don't blame the children for hiding. She'd have me hiding behind the sofa.
I'm like you in that sometimes she seems so disturbed I feel sorry for her. But at the same time there is something quite malevolent about her, she literally makes me feel sick. Who did she blame for the fact that they hide btw? The parents?

 

[Countrygirl]

@Countrygirl

I don't blame the children for hiding. She'd have me hiding behind the sofa.
I'm like you in that sometimes she seems so disturbed I feel sorry for her. But at the same time there is something quite malevolent about her, she literally makes me feel sick. Who did she blame for the fact that they hide btw? The parents?

No, she didn't blame the parents, strangely. She probably realises they are too stoned on drugs as they struggle to cope with their poverty and social inadequacies to take much notice of their ailing off-spring.

I think she was hinting that she has made the astounding discovery that children aren't as keen on technology as we all thought.

There is probably a paper in the pipe line.

 

[Large Donner]

Countrygirl said: ↑
Also David didn't mention that EC has been given further funding which she is going to use for a larger LP study.

This is no surprise this is the tactic such people have always used, instead of addressing their critics claims (that would just shine a light on the claims) they just keep you fire fighting by pumping out more and headline grabbing crap so that you cant keep up. They "win" by pumping out hundreds of soundbites.

 

[Daisymay]

This is no surprise this is the tactic such people have always used, instead of addressing their critics claims (that would just shine a light on the claims) they just keep you fire fighting by pumping out more and headline grabbing crap so that you cant keep up. They "win" by pumping out hundreds of soundbites.

Yes she'd make a really good politician

 

[Countrygirl]

One important point: EC told the audience that CFS is likely to be a collection of different illnesses.

Yes! Our point entirely!

So why inflict dangerous and harmful 'treatments' on people with the neuro-immune disease ME?

Why can't she just admit that LP/GET/directive CBT is harmful for this particular group of patients??

She can then keep her little empire of tired kids or those with PVS who will recover in 6 months and leave people with ME to biomedical researchers/clinicians.

Why is that so impossible for her?

Why does she not use appropriate diagnostic guidelines in order to filter out those with ME?

Perhaps she enjoys the drama that she is creating by harming this sub-group of children?

 

[Countrygirl]

"Professor Esther Crawley's threshold for what she considers "harassment" is even lower than the SF-36 threshold for "recovery" in the bogus PACE trial."

Please leave comments on the blog itself. Thank you David Tuller

Nederlandse Google vertaling: http://bit.ly/2zTyv4E

http://www.virology.ws/…/trial-by-error-my-brief-encounter…/

 

[lilpink]

There was repeated mention of Mums pushing for more intensive treatments...GET/CBT etc.

EC also stated that she has found that when she Skypes the children that she finds it difficult to get them in view as they seem to hide elsewhere in the room.

She commented on the surprising discovery that children apparently don't like using skype with her.

Echos of the Child Catcher in Chitty Chitty Bang Bang!

 

[lilpink]

One important point: EC told the audience that CFS is likely to be a collection of different illnesses.

Yes! Our point entirely!

So why inflict dangerous and harmful 'treatments' on people with the neuro-immune disease ME?

But equally why inflict unproven therapies on anyone left over after authentic ME patients have been removed from the equation? Any way you look at it her work lacks scientific rigour and cannot be extrapolated to any cohort because such a mixed cohort is meaningless.

Having said that I love your account Countrygirl. Can't wait to see this on film

 

[Hip]

Also David didn't mention that EC has been given further funding which she is going to use for a larger LP study.

I wonder if it is possible look into the basis of this funding decision.

For something that is such nonsense as the Lightning Process, how did Esther Crawley get funding for it, when many biomedical studies on ME/CFS are not given funding?

Does anyone know if the details of the funding decision (such as the names of the people who made the funding decision) are openly available?

 

[Countrygirl]

I wonder if it is possible look into the basis of this funding decision.

For something that is such nonsense as the Lightning Process, how did Esther Crawley get funding for it, when many biomedical studies on ME/CFS are not given funding?

Does anyone know if the details of the funding decision (such as the names of the people who made the funding decision) are openly available?

@Hip, she gave no details, so what I am about to say could be wrong. (well, I am quoting Esther..........) but her almost throw-away remark was that she had been given extra funding for research and she had decided to spend it on more LP research. The impression I had was that it wasn't designated for LP in particular...............just that a pot of money has been offered to her and she has decided to spend it on a larger LP trial.

It bears investigating, but I can't provide a more accurate answer based on her lecture.

 

[Countrygirl]

Can't wait to see this on film

It will be released at a cinema near you in good time @lilpink

Hugh Grant is just rehearsing for the role of David. Not sure who will play EC yet

 

[MEMum]

Well done @Countrygirl and friend.

The last funding for LP was not from MRC, but a couple of Trusts most people haven't heard of, with dodgy histories.

 

[Countrygirl]

Well done @Countrygirl and friend.

The last funding for LP was not from MRC, but a couple of Trusts most people haven't heard of, with dodgy histories.

Interesting @MEMum

do you have more info on that?

 

[Large Donner]

I really wonder if the rest of the BPS crowd are cheering her on or are really nervy she is going to raise the curtain on them through her increasingly bizarre claims.

 

[lilpink]

It will be released at a cinema near you in good time @lilpink

Hugh Grant is just rehearsing for the role of David. Not sure who will play EC yet

Jessica Rabbit?

 

[Large Donner]

There's no way she wont play herself shes got a body language and acting coach already by the looks of it.

Even though she will come across like one of those deluded people in the early rounds of the X Factor I'm a sure she couldn't resist the cameo.

 

[Jo Best]

@Countrygirl you're a hero!

 

[Countrygirl]

I will say that Esther came across as very persuasive, likeable and sincere.

If I didn't know the facts and the harm she is inflicting, I would have sympathised with her.

But I do know the facts...................

Maybe she does successfully help some children................those, in the main, who are not sick with a devastating disease like ME......................and well done if she does.

BUT her refusal to acknowledge that she is seriously harming a significant number of children.............even to the point of paralysis..............and then dumping them...................tormenting distraught and over-stretched parents....................ringing their homes several times a day to push them into entering her trials...................(don't we call that harassment?) ..................and claiming that severe ME is PRS...........or whatever the latest buzz word is..........PAWS I think...........................Pervasive Arousal Withdrawal Syndrome (give me strength! )...............is serious, serious malpractice.

Grandfather would not be proud of this Esther.

Please, please think what you are doing! You have the qualifications to do so much good.

At the moment, you are doing so much harm.

Please engage with the scientists who know what they are doing.

 

[lilpink]

I will say that Esther came across as very persuasive, likeable and sincere.

Admittedly I haven't seen her 'in the flesh' but if what I've seen on video is anything to go by then this surprises me greatly. I find her screen presence very insincere.