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

[lilpink]

Apparently this is worth watching for a laugh: (EDIT: clearly a laugh at PP's expense..not anyone with a learning disability..should go without saying but we know how those pesky BPS trolls like to twist stuff).

 

[me/cfs 27931]

Phil Parker is on YouTube talking SMILE....Please leave comments!

"Chronic Fatigue". "Chronic Fatigue". "Chronic Fatigue".

You'd think Parker would at least know the name of the disease (purportedly) being studied.

"Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial"

 

[Wonko]

erm...I suspect he doesn't know much about brain stuff, not at all much. In that up to 4 ish minutes in I don't think he's got one thing correct. Do I have to watch more of this drivel?

 

[anni66]

Hi @anni66 , link to Facebook post https://www.facebook.com/joan.mcparland/posts/1697031973671883 - the writer has set it to public and asked for it to be shared so I'd say go for it.

I'll edit my post above to include the link as well.

Thanks. I' ll post to forums as well as generally .

 

[TiredSam]

Action
The claims must not appear again in their current form. We welcomed the decision to remove the claims. We told Phil Parker Group not to make claims on websites within their control that were directly connected with the supply of their goods and services if those claims could not be supported with robust evidence.

Robust? You want robust? I'll give you robust:

Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, said:
… “This is a robust study because patient were allocated to one of the two treatments at random ensuring that any difference seen in outcome between these treatments, is not due to pre-existing differences in the patients …

So there, I can go back to making all the claims I want, 'cos now I've got robust. Thanks Esther, thanks Michael, thanks SMC! Now, which way's the bank ...

 

[Chrisb]

Robust? You want robust? I'll give you robust:



So there, I can go back to making all the claims I want, 'cos now I've got robust. Thanks Esther, thanks Michael, thanks SMC! Now, which way's the bank ...

It is fortunate that, as I understand it, which may be wrong, this can only be claimed if the LP treatment is offered in conjunction with standard medical care. At least he does not seem to have carte blanche. Yet.

 

[Dx Revision Watch]

Based on the little on the website it looks a just little bit familiar, but if he can "cure" people from the clutches of M.E. using these "techniques" then crack should be easy.

Of course if he can't then rather than dealing with a load of brainwashed disabled physically limited people he could be dealing with a load of crackheads in withdrawal - which should be fun, for some of those involved anyway.

Did you clock that the acronym he uses for his recovery from addictions The Recovery Process (TRP)
( http://trplife.com/rediscovery-process/what-is-the-rediscovery-process/ ) is one letter away from "TRIP"?

 

[Wonko]

Did you clock that the acronym he uses for his recovery from addictions The Recovery Process (TRP)
( http://trplife.com/rediscovery-process/what-is-the-rediscovery-process/ ) is one letter away from "TRIP"?

i didn't but LOL

 

[Dx Revision Watch]

The paper is not yet listed on PubMed.

Authors and co-authors of journal papers that are listed in PubMed can register for commenting on PubMed on the papers of others. (If your email address is not included in the paper, for example, if you weren't the "Corresponding author", you may need to ask another author who is already registered to comment to vouch for your email address as part of the registration for Readers' Comment process). You can also invite one of the co-authors of a paper to which you have left a comment to respond to your comment.

 

[Hutan]

This is a robust study

There are so many compelling personal stories on You tube extolling the virtues of the Lightning Process. Typically set to upbeat music. It's enough to make me label myself a crazy person holding myself back from health and ask where to send the money.

Well, not yet. But there are going to be queues of people at the doors of Lightning Process therapists.

Here's one recovery story. Note that he's increased his work hours from 9 hours to 20 hours - he's still not doing a 40 hour week. There's a comment from him below a month ago where he is mentioning other things that helped him. And the link to his blog www.lerinse.co.uk doesn't seem to work.

We have got to find people who didn't recover after the Lightning Process, and get their stories into the media. As others have said, we need to shift the narrative from 'brain training', to 'standing in circles and shouting 'Stop!'.

 

[Ysabelle-S]

Telegraph journalist:

https://twitter.com/i/web/status/910774752557584384

I have to ask, who warned him? SMC? The dodgy researchers? And have the other journalists also been 'warned' about 'these people' - ie, ME patients.

Adding screencap of the full tweet:

 

[Ysabelle-S]

More responses to the quack LP trial:

https://twitter.com/i/web/status/910848438639710210

https://twitter.com/i/web/status/910854233125277696

 

[Dx Revision Watch]

...As others have said, we need to shift the narrative from 'brain training', to 'standing in circles and shouting 'Stop!'.

http://forums.phoenixrising.me/index.php?threads/a-balanced-view-of-the-lightning-process.35835/

Poll from 2015:

A Balanced View of The Lightning Process

Has the process helped you?


17 members voted "No" in the Poll and couple of people who had undergone LP had left comments.

 

[Wonko]

We have got to find people who didn't recover after the Lightning Process, and get their stories into the media. As others have said, we need to shift the narrative from 'brain training', to 'standing in circles and shouting 'Stop!'.

Weren't there some a while ago that an LP practitioner had to either threaten to or actually take legal action to get to shut up? The problem is I have no idea if a while means in the last month or 2 or 5 years ago - I just seem to remember something about it happening.

 

[Dx Revision Watch]

https://hubpages.com/health/The-Lightning-Process-Didnt-Work-For-me

The Lightning Process Didn't Work For me
Updated on May 20, 2014

(This account may be included in full or in part on John Sayer's site)

 

[Sean]

"Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial"

It was not controlled.

 

[Dx Revision Watch]

Weren't there some a while ago that an LP practitioner had to either threaten to or actually take legal action to get to shut up? The problem is I have no idea if a while means in the last month or 2 or 5 years ago - I just seem to remember something about it happening.

In late 2009, Private Eye had run a small piece in which certain unsubstantiated claims were made.

There was also a similar claim in the Times, a couple of weeks later, though significant details differed. I wrote this up here, on my old site:

https://meagenda.wordpress.com/2009...-and-threat-of-legal-action-10-november-2009/


The reference in the Times to an ME patient was in piece published by John Kampfner, Chief executive of Index on Censorship and author of Freedom for Sale.

I had some contact with Kampfner, at the time, about whether the reference in the Times alluded to the same alleged case that had been reported a couple of weeks earlier in Private Eye. (Colleagues of Mr Kampfner's involved in the "Libel Reform coalition" had links with Private Eye.)

I don't have permission to share Mr Kampfner's response but I did take the opportunity to provide him with information about the Lightning Process.

Since no-one ever came forward with evidence of having received threats of legal action and since Private Eye provided no evidence to support their brief report and since the details in the Times differed from those in the Private Eye report, the report had little credence and I would not rely on it.

Brief write-up here:

https://meagenda.wordpress.com/2009...-and-threat-of-legal-action-10-november-2009/

 

[HowToEscape?]

People like Crawley they went through medical school, they handed in their papers, and got their exams, but they never believed in what they were taught.

They believed in their hippie dippy mind-over-matter magic all along, and nothing could ever change their minds.

No, they believe the goal is to elevate themselves at the expense of the patients

 

[Esther12]

BMJ coverage from Nigel Hawkes (presumably terrible) is behind a paywall and not up on sci hub yet: http://www.bmj.com/content/358/bmj.j4372

 

[Noirin08]

I think that you've quote the wrong post there.

Sorry, I'll delete. It was Ysabelle's previous post I meant to quote