Esther Crawley's contribution to #MEawarenessweek

[Cheshire]

Not a joke...

What a bitter hijack...



Direct link:
https://www.nihr.ac.uk/blogs/worries-that-keep-you-awake-at-night/8466

Just a little extract to let you have a taste of her revolting prose (this woman really has no decency):

What do you worry about at night? Some people worry about their careers, others worry about the end of the world. I worry about children who suffer because effective treatment is not available to them. I probably ought to worry about the starving millions or those that die because they cannot get vaccinated. But in the UK, there are children who suffer because they cannot get help for their CFS/ME, and this is something we really ought to be able to sort out.

Leaving the field would be your best contribution, Esther.

Edit: Crawley's desire to be seen as a saint is quite perplexing...

 

[Andy]

Just, wow. Though we shouldn't be surprised really I suppose. I'm tempted to create a Twitter account just to comment on it.

 

[NelliePledge]

https://www.google.co.uk/amp/s/dictionary.cambridge.org/amp/english/brass-neck

 

[NelliePledge]

Not actually sure if she is genuinely oblivious or is trying to provoke a reaction. Which is what Sharpe seems to be angling for in his tweets. Is he more Machiavellian than her???? Or is she cleverer with the sheeps clothing.

 

[Andy]

Direct link:
https://www.nihr.ac.uk/blogs/worries-that-keep-you-awake-at-night/8466

Archived.

Most of the children who come to my clinic are only attending school for two days a week.

So not the most severe then.

Treatment in children is reasonably effective. With specialist treatment, about two thirds will get much or completely better within 6 months, returning to full time school with minimal, if any, symptoms.

Wow, it's almost as if they could get better by themselves [with adequate rest and pacing]...

Without treatment, less than 10% will get better.

I'd like to see the research from where that figure comes from.

We always use integrated qualitative methods in our trials but (tissue alert), some of what we hear is just so sad:

“We got to the point where we got so desperate we said… refer us, we’ll do whatever we need to do.”

“[this trial] was a little bit like a lifeline, knowing that we could hopefully get some treatment”,

Yep, it is sad that children get so desperate that they are willing to take part in one of Crawley's trials.

ETA: Added [with adequate rest and pacing] under the second quote from the article.

 

[arewenearlythereyet]

It’s so shallow and fatuous it certainly feels like mocking ...if you put Jenifer Saunders in your mind pouting as she says it or perhaps Catherine Tate it could be a comedy sketch or parody of someone really fake .... it is clearly her sick sense of humour trying to get a rise out of people and disrupt the media attention.

She’s not stupid just exceedingly manipulative no wonder she got sidetracked into psychology.

 

[Barry]

Edit: Crawley's desire to be seen as a saint is quite perplexing...

Not really.

 

[Hoopoe]

there are children who suffer because they cannot get help for their CFS/ME, and this is something we really ought to be able to sort out.

That she's heading a clinic that sells this treatment has of course nothing to do with her motivation to help children.

 

[arewenearlythereyet]

“We always use integrated qualitative methods in our trials but (tissue alert), some of what we hear is just so sad:”

More like a bucket ...a tissue would not be sufficient for this vomit inducing bilge!

It is sad though ...

 

[chrisb]

Is there a study under way testing the curative effects of emesis?

 

[petrichor]

Hm this somewhat implies that NIHR isn't being as impartial as they should be.

 

[Amw66]

Can someone tweet back link to @Docsimsim and Vink' s take down of FITNET?

 

[Andy]

@dave30th , thought you might want to see what your BFF has been up to now.

 

[Anna]

I find this so insulting and disrespectful, it disgusts me. Just shows what we are up against and just how little they listen to patients. Shocking!

 

[Allele]

So much to be nauseated by in this puff-piece of self-promotion, but one thing I find really telling is this weirdness:
"My teenagers are often attached to the Wifi by an invisible umbilical cord so I would assume all teenagers would love online treatment." (Emphasis mine)

Just, eeew.

 

[Sly Saint]

 

[Sly Saint]

ironic that immediately below that tweet is this one:

 

[Tia]

This is so bizarre - to start by making it all about her and what she worries about reads very strangely to me. And the bit where she says:

"Delivering treatment online seems such an obvious way forward for teenagers it is slightly surprising it hasn’t been done before. My teenagers are often attached to the Wifi by an invisible umbilical cord so I would assume all teenagers would love online treatment. But not all do."

...Just because teenagers enjoy using the internet when well, doesn't mean that they think it will provide them with a helpful treatment them when they become seriously ill!! This feels incredibly patronising to me: teenagers aren't stupid.

And to say *tissue alert* in such a flippant way when talking about something so serious. She really doesn't seem to understand professional boundaries. What a strange view of herself she has.

 

[Alvin]

She is going for broke

 

[Luther Blissett]

And to say *tissue alert* in such a flippant way when talking about something so serious. She really doesn't seem to understand professional boundaries. What a strange view of herself she has.

It's almost like she is unable to empathize or self reflect.

My teenagers are often attached to the Wifi by an invisible umbilical cord so I would assume all teenagers would love online treatment. But not all do.

What a superb example of not understanding that some does not equal all. A recurring pattern.

Are her teenagers receiving online treatment? I doubt it. So why would that be significant at all? Teenagers like ice cream, but it does not follow that they like being locked in the walk in freezer. No wonder she can't tell the difference between a service evaluation and a human study.

Also why are her teenagers attached to Wifi? I could understand their devices being attached...

I worry about children who suffer because effective treatment is not available to them. I probably ought to worry about the starving millions or those that die because they cannot get vaccinated.

You probably should. Most of us do. I would not like people who do not worry about starving millions.

Because of their ME, they lose their friends, miss out on education and it causes almost unbearable stress and hardship on families.

They do not lose these things because of ME. They lose these things because of other's reactions to them having ME.

Understandably, 30 to 40% become depressed or anxious reducing their chance of recovery.

When did this become a 'fact'?

We always use integrated qualitative methods in our trials but (tissue alert), some of what we hear is just so sad:

'in our trials but'? why not 'and' instead of 'but'?

Integrated qualitative methods also challenges my pre-conceptions about teenagers, as it does everything else.

Your pre-conceptions are always challenged yet you hold onto them? Why?

Some teenagers really hate the idea of Skype (many love it) and some really want a face to face assessment. Which I think probably just shows that we are all human, with different needs and the NHS needs to work on individualising how we deliver treatment as well as what treatment is offered.

Some teenagers like things and others don't. This shows that teenagers are human. I have studied philosophy.

Well that is a profoundly odd piece to read. I read somewhere that writing is 'thinking in slow motion'. I'm not impressed with the thought that went into this.