Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

[Valentijn]

So if its effective then the timing is just right to be incorporated into the new NICE guidelines? Parallel Universe moment.

If anything it'll help in discrediting the rest of Esther Crawley's work, and other BPS research by association. LP is the most blatant of quackery, and NICE simply can't afford to be seen taking it seriously.

She's gone off the deep end, and no one can ignore it anymore.

 

[Yogi]

So same day as NICE says it is doing a full review of the guidance EC who was on NICE Guideline Development Group is trying to sell the Lightening Process as a cure for ME.

There is so much going on it is difficult to keep up, would be good to have a summary of all of Esther Crawley's work including this update of SMILE trial on MEPedia.

http://me-pedia.org/wiki/Esther_Crawley

 

[Londinium]

(I should stress I'm hearing this second hand, but I trust the person telling me).

 

[Dx Revision Watch]

The link on the first post shows the embargo lifting at 11.30pm? Not sure if this is a typo as it looks odd. I'm keeping my eyes peeled as we (son) have an appointment with the Bath clinic tomorrow and I would like to know the results before then. I've asked about them being published so many times and not got any answers....

You are quite right, UKmum, it does say 11.30pm Wednesday - not 11.30am, as I have posted (I will correct my post).

So the SMC briefing was this morning at 10.30am and the embargo lifts, according to the media alert here, at 11.30pm this evening (Wednesday).

 

[Dx Revision Watch]

@UKmum

Thanks for pointing out my error. I thought this morning it seemed an odd time for an embargo to lift. I've edited my post.

 

[anni66]

First FOI tomorrow?

 

[Sean]

She's gone off the deep end, and no one can ignore it anymore.

Yep, completely lost the plot. She is a clear and present danger to patients, and should be immediately removed from her positions of responsibility and authority, pending a full, independent, robust, and transparent investigation.

 

[slysaint]

But she'll probably say that 'kids love LP'; all that jumping on big red dots and saying 'stop'..........

 

[AndyPR]

But she'll probably say that 'kids love LP'; all that jumping on big red dots and saying 'stop'..........

I think that's Twister that she's thinking of then...

 

[Dx Revision Watch]

"A large part of the training for LP practitioners is to train them to appropriately assess potential trainees for their suitability for the process, as it is essential to ensure, as far as is possible, that only those who are ready to get benefits from the training program are enrolled in the training."

Should this crock of shite end up embedded in NHS service provision, by what means will potential "trainees" be assessed for suitability for the process?

 

[Invisible Woman]

"A large part of the training for LP practitioners is to train them to appropriately assess potential trainees for their suitability for the process, as it is essential to ensure, as far as is possible, that only those who are ready to get benefits from the training program are enrolled in the training."

Should this crock of shite end up embedded in NHS service provision, by what means will potential "trainees" be assessed for suitability for the process?

I reckon they are looking for people who are both desperate and the type who are more likely to comply without asking awkward questions. People who they feel can be persuaded to suspend disbelief.

This is not to denigrate those who have tried it out of desperation. In many cases, for most people, just following doctors orders can be the best thing you can do.

ETA : spelling - autocorrect

 

[Sean]

Should this crock of shite end up embedded in NHS service provision, by what means will potential "trainees" be assessed for suitability for the process?

Must be acephalic and had your ethics gland removed.

 

[JohntheJack]

First FOI tomorrow?

I have previously requested the data and have been in communication with the legal department at Bristol University. I was aware some time ago that they were going to be publishing this month (originally it was set for last month).

It is, of course, open to anyone to make a request, but I would suggest that it would not help our cause to flood the University.

I have a new request, based as a response to the already existing correspondence, ready to send, and will email it to Bristol Uni as soon as the paper is released.

 

[slysaint]

A large part of the training for LP practitioners is to train them to appropriately assess potential trainees

Again, similar to OHC who offer discounts on their training (as counsellors/practitioners) to patients as they say it will not only help with recovery but get them a job at the end.

Isn't there a law against this?

 

[Wonko]

Isn't there a law against this?

I'm fairly sure it's anything goes these days in the UK, unless, of course you're not rich, in which case you're likely to be arrested for breathing, unless you've got a receipt for the air used (no, not really, but they've privatised the water, air may be next)

 

[ladycatlover]

I reckon they are looking for people who are both desperate and the type who are more likely to comply without asking awkward questions. People who they feel can be persuaded to suspend disbelief.

Rather like those who improve with CBT or GET then.

 

[Invisible Woman]

Again, similar to OHC who offer discounts on their training (as counsellors/practitioners) to patients as they say it will not only help with recovery but get them a job at the end.

Isn't there a law against this?

I'm sure (I think?) there are laws against pyramid schemes.

Unless... you're a sick, disabled and vulnerable. Otherwise known as prey.

 

[UKmum]

Those assessed as ready to benefit from LP will be those willing and open to try- which will be those people who probably don't have ME/CFS or haven't heard much about the LP. Patients that experience PEM will be obviously less willing to try. Thus the results will demonstrate improvements without being skewed by those pesky ill people who don't believe its going to help and therefore wouldn't see improvements.

 

[A.B.]

@UKmum I don't think having ME/CFS makes people automatically qualified to assess the validity of treatments, nor does it protect against wishful thinking or desperation or pressure from other people to try and get better.

 

[trishrhymes]

I suspect they do their best to weed out patients with ME (Edit: ME with PEM) and anyone of a skeptical turn of mind.