"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

[Cheshire]

More balanced and sensible report here:
The Lightning Process: Does this controversial (and expensive) chronic fatigue syndrome treatment really help patients?
Despite new research, ME experts remain sceptical and say it could be damaging

http://www.netdoctor.co.uk/healthy-...ightning-process-me-chronic-fatigue-syndrome/

 

[Wonko]

Can this Paediatrician now be officially classed as a quack Doctor?

No, we are no longer allowed to call quacks quacks as it might offend them, and be dismissive of their supporters, and their wallets contribution to the practitioners yacht.

We are supposed to engage in debate, about things like what language and note "stop" should be shouted in (e.g are funny voices or imitations of Winston Churchill more or less effective), what is the most efficacious material for drawing the circle with and is left or right hand spinning better for health.

 

[Mrs Sowester]

http://www.dailymail.co.uk/health/a...rsial-light-treatment-patients-DOES-work.html

And from the Daily Wail

 

[Mrs Sowester]

Gaslighting Therapy is what we should call it, it'll catch on

 

[lilpink]

She hasn't been which is why people are still working with her and she has access to cohorts? I appreciate the sentiment though. You would think this line has now officially been crossed!?

Look at her body of work and it's marbled with threads of dodgy doing. Her REC number fiasco stuff for eg.... having seen so much of her work I couldn't say that any of it is 'quack-proof'.

 

[Valentijn]

More balanced and sensible report here:

It's reassuring to see at least one sane article thus far. I was starting to doubt the value of the human race Though I expect we'll also see some pretty heavy-hitting articles in the near future which are far more critical of LP, Crawley, and their associates.

 

[Sean]

We need a duck-in-a-white-coat icon.

Quack!

 

[trishrhymes]

 

[Ysabelle-S]

They have sunk into the sewer with this trial. It's good that it's out in the open. They cannot pedal back from this and pretend it never happened.

The abusive patient narrative is meant to silence us, deny us a right to be heard, and prevent proper researchers from entering the field and throwing out the quacks. We know that. And they know we know. They play victim to cover up the scale of their bad research, poor science and their mistreatment of vulnerable patients.

 

[Wonko]

It's reassuring to see at least one sane article thus far. I was starting to doubt the value of the human race

I'm pretty sure since 2008, at least, the human race has a large negative value - and that's according to the "experts", as far as I know nobody asked the overwhelming majority, but rapidly decreasing number, of lifeforms

 

[adreno]

We need a duck-in-a-white-coat icon.

Quack!

Perhaps this one will do:

 

[Sean]

They have sunk into the sewer with this trial. It's good that it's out in the open. They cannot peddle back from this and pretend it never happened.

The abusive patient narrative is meant to silence us, deny us a right to be heard, and prevent proper researchers from entering the field and throwing out the quacks. We know that. And they know we know. They play victim to cover up the scale of their bad research, poor science and their mistreatment of vulnerable patients.

Yes, and yes.

 

[Sean]

Yep, something just like that.

 

[Dx Revision Watch]

Who funded this? Was it NIHR?

I thought I read somewhere that Michael Sharpe is the senior NIHR grant making person (who would approve such grants to EC).

Does anyone have the evidence that Michael Sharpe is on the NIHR?

Surely if so that should be declared as a serious conflict of interest!

From the PDF of the paper:

Funding
This trial was funded by the Linbury Trust (grant number LIN2038) and the
Ashden Trust (grant numbers ASH1062, 1063, 1064). EMC was funded by an NIHR
Clinician Scientist fellowship followed by an NIHR Senior Research Fellowship (SRF-
2013-06-013) during the trial. SMC was funded by an NIHR Post Doctoral Fellowship
during the analyses of the trial.
----------

The initial feasibility study had also been co-funded by the Linbury Trust and the Ashden Trust

 

[aimossy]

Look at her body of work and it's marbled with threads of dodgy doing. Her REC number fiasco stuff for eg.... having seen so much of her work I couldn't say that any of it is 'quack-proof'.

I personally agree but researchers/orgs have still worked with her.. I kind of feel that this may be or should be the last straw for them in continuing to do so.

Edit: It seems like she has crossed a line.

 

[Ysabelle-S]

UK journalist Sonia Poulton is not impressed with LP for ME (first tweet about the SMC conference):

https://twitter.com/i/web/status/910141331518914560

These from today:

https://twitter.com/i/web/status/910782386509635584

https://twitter.com/i/web/status/910783518946545665

 

[Ysabelle-S]

Keith Geraghty is writing a blog on this, so if you have any thoughts you can contact him:

https://twitter.com/i/web/status/910808236365926400

 

[TiredSam]

Actually, in my view, NLP (and therefore LP) is quite hippie dippy. It was created in the 70s. From wikipedia:

Every time I hear "NLP" these days I can't help remembering that the gun of one of the two founders was used to shoot a prostitute in the face.

I'm sure there must be a way for me to change my thoughts so that stops happening, but how?

Don't be fooled by AFME's words.

Action and not words matter.

AFME just talk the talk but never walk the walk.

From the Daily Mail (which I was just starting to warm to, oh well):

In a statement, Action for ME said: 'The results of this trial indicate that the Lightning Process in addition to specialist medical care reduced participants' feelings of anxiety and depression.

'However, supporting young people to cope better with the emotional impact of a chronic neurological condition addresses neither the root cause of the condition nor its primary symptoms.'

I find that to be a disappointingly splinter-up-the-arse type of statement.

 

[Cinders66]

Interesting that Esther Crawley is upping the abuse blocking research narrative, whilst Jose Montoya said we were failed by medics misjudging the illness as psychological. It is ironic that with a CMRC charter supposed to stop harmful media discourse , it's Esther who is doing the harm and making the smears.

 

[TiredSam]

It is ironic that with a CMRC charter supposed to stop harmful media discourse , it's Esther who is doing the harm and making the smears.

Nice spot! Has she just breached the CMRC charter?

At 12 months, this group also had less fatigue, anxiety and depression.

I'm sure this has been mentioned before by someone, but what on earth has this got to do with ME? Why not just call it a study on teenagers with fatigue, anxiety and depression?