Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

[Valentijn]

I may be wrong but I can't imagine such a pre-assesment form being used in a rigourous scientific trial (be it for a cancer or depression drugs).
It really seems both unprofessional and unethical.

And that's the public version created for the trial. Their usual forms might be even worse.

 

[helperofearth123]

Obviously, we want to make sure no-one sends any e-mails that could be presented as 'abusive' (it doesn't seem to take much), and it would be a bad idea to talk about a "criminal scam" or anything like that. Generally, I think that e-mails to Crawley are unlikely to be of use. She seems to ignore anything David Tuller sends, while presenting him as a part of an anti-science campaign, and he seems likely to do a better job than most others.

Of course abuse is always unacceptable. But calling something a "criminal scam" is not abuse if that is what is happening. In which case, for me to not use that term someone would need to convince me rationally why that is not what is happening because that is my current conclusion.

It's strong language, but not foul language. It's true, even though its not the accepted mainsteam opinion yet. Imagine if this was being pushed as a treatment for Alzheimers? People with holes in their brains put on a training program for their 'success' because of the 'mind body connection' instead of real treatment and then given a survey to report their response, after being told they have to constantly repeat that they are better.

It's a bit like a cult where to join you have to hand over your own critical thinking to the cult leader and defer to everything they say. Thats what the sign up form is for, to filter through to get the most gullible signups. They literally ask on the signup form "are you analytical?" and then ask signups to stop thinking.

If that isn't a scam, I don't know what is.

 

[JohntheJack]

The form is archived at https://web.archive.org/web/2012102...ue/smilestudydocuments/lipcassfrmv2july10.pdf and accessible from https://web.archive.org/web/2011052...complexhealthneeds/chronic-fatigue/smile.html

Thanks, Valentijn. That is interesting.

 

[Philipp]

If that isn't a scam, I don't know what is.

That is beside the point here, though.

What good do you think will come from telling a person you think is a criminal, that, in fact, you think she is a criminal?
Especially one with a history of lying on radio (see yesterday), making accusations of libel she cannot refute when challenged to (see Tuller), portraying herself as the victim of some weird campaign when she is called out for doing bad work?

She will take some sentence you wrote out of context and show it to someone as 'proof' of her claims that really, she is attacked like this all the time, isn't it horrible that possible child abuse that redirects funding from real research is not welcomed with open arms by everyone, my my, gosh, she almost left the field because of that but she is so nice and after all think of the children. What if they kill themselves because she can't save them with proper follow-up because you mildly inconvenienced her with truthful statements and that hurt her feelings?

Wessley did exactly that and created an entire narrative about death threats he received because some random dude copy/pasted some Bob Dylan lyrics somewhere on a blog. No one who parroted his slander checked up on whether it was true, ever, and you find accounts of this in different ways, shapes, and forms all over the mainstream media.

'They' are playing dirty and have been getting away with it for a century. Don't make it easier for them.

 

[helperofearth123]

That is beside the point here, though.

What good do you think will come from telling a person you think is a criminal, that, in fact, you think she is a criminal?


'They' are playing dirty and have been getting away with it for a century. Don't make it easier for them.

Fair enough. I suppose I have hope that they aren't doing it 'deliberately' in that they might think these things actually work, because they think that ME/CFS is mental not physical and so because they think that, they think that it does work. Its possible they are just woefully ignorant and pressing on because they are biased and want to believe their field of research can solve problems that it can't.

"Never attribute to malice that which can be adequate explained by stupidity.".

I hoped to be a educational force in their lives, pointing out the holes in their experiment. If rational criticism of junk science is considered abuse we truly are doomed.

 

[Sbag]

but here are my notes from the other thread.

Someone tried to get info on the financial aspects last year but results were not given because results were waiting to be published, might be time to revisit - https://m.facebook.com/notes/jan-van-roijen/crawley-quack-therapy/10154818274593322/ :

Subject: Re: SMILE study
Date: Mon, 3 Oct 2016 12:08:19 +0100
From: University of Bristol FOI mailbox <freedom-information@bristol.ac.uk>
To: John Peters <johnpetpub@gmail.com>
Dear Mr Peters
Thank you for your recent Freedom of Information request, as below:
This request concerns this study:
The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study): http://bit.ly/2dq2XL1
The Principal Investigator is listed as Esther Crawley and I am writing to you as the presumed responsible public authority.
1.) Please give the total cost of the study.
2.) In the trial protocol (1), it is stated: ‘Families currently pay approximately £620 to attend the Lightning Process course.’
Please say how much was paid for children in the study to attend ‘Lightning Process’ courses.
If possible, please give the cost per child attending and the overall cost.
3.) Please say if any discount or special deal was arranged with the providers of ‘Lightning Process’ courses.
If there was a discount or special deal negotiated, please say what it was.
4.) It is said that Phil Parker, the creator of this intervention, receives commission on each course undertaken.
Please state whether you are aware of any commission paid for any of the courses provided as part of the study.
If you are aware, please say what commission was paid.
Please also state if there was any discount or special deal done with Phil Parker regarding his commission, and if so what it was.
In response to parts 1-3, this information is held by the University but is exempt from disclosure under section 22 (1) of the Freedom of Information Act as it is information intended for future publication.
Further information about the SMILE and documents containing the information you have requested are due for publication but there is no fixed date for publication at present.
If it assists, the study protocol is in the public domain and available at: http://bit.ly/2dq4qRy
The University does not hold any recorded information in relation to part 4.
Review procedure
If you are not satisfied with the University’s response to your request you may ask the University to review the response by writing to:
Director of Legal Services - Secretary’s Office - University of Bristol
Senate House - Tyndall Avenue - Bristol BS8 1TH
Email: freedom-information@bristol.ac.uk
enclosing a copy of your original request and explaining why you are requesting a review.
The full review procedure is set out at:http://bit.ly/2dq5bdy
Your request for internal review should be submitted to us within 40 working days of receipt of a response.
If you are not satisfied with the outcome of the internal review you may also contact the Information Commissioner’s Office at:

 

[Philipp]

I hoped to be a educational force in their lives, pointing out the holes in their experiment. If rational criticism of junk science is considered abuse we truly are doomed.

Yeah, that... sort of is the entire problem here isn't it.

That's why we do need to have our Tullers and Geraghtys and Rehmeyers and so on put out a thorough analysis and publish it somewhere where it cannot be ignored as easily. Private emails can just be discarded if one does not care to read them. It is harder to do that with openly published stuff that brings up the most relevant points, especially when one wants further funding for other projects and does not have any answer to valid criticism.

 

[Wonko]

@Philipp

I don't, entirely, agree.

We have lots and lots of people, who's sole job is to tell people they think are criminals that they are in fact criminals, some of them are called judges, some police, some are just keen letter writers to the Times (other newspapers are available, at additional cost).

Where I might agree is that there is little point in telling someone they are a criminal scumbag unless you can enforce any action, or at the very least defend yourself from any response.

As a general rule, ascribing malevolence to harmful actions which could also be ascribed to stupidity, if the person/organisation involved is trying to hide things, acting in a <no idea what the word is, hopefully context will make it clear> manner etc., in which case it seems obvious, to me, that they are aware, that it is not stupidity.

 

[Philipp]

If any judge/policeman wants to get involved I am all for them 'calling it as they see it'. ;-)

What I meant was that there is usually not much point in telling someone your opinion in private if you are not a person of authority of some sort. And with people like Parker/Crawley this seems especially futile since they seem to comfortably cross the line between what most people would call a 'rational mind' and what I would call 'a pretty nice trip' as a part of how they make their living.

 

[Esther12]

The LP pre-assesment form (archived 2011) from the trial gives a better idea:


And for the "Learning Facilitator:


It's not clear if, when, or how this form was used in the process of allocating patients to LP+SMC versus SMC.

WTF - I've forgotten how much SMILE went all in with the loopiness of LP. Amazing that this was on the Bristol Universtiy website.

re "criminal scam":

I really agree with comments from @Philipp -so am really just repeating him here.

If someone had proof of a criminal enterprise, what would be the point of writing to Crawley about it? Why not contact the police?

Writing to Crawley to make an accusation like that will just give her more stuff to show to sympathetic colleagues and journalists to use against 'activists'. It's easy to see how that could be harmful for us, but it seems amazingly unlikely it could be beneficial.

 

[JohntheJack]

but here are my notes from the other thread.

Someone tried to get info on the financial aspects last year but results were not given because results were waiting to be published, might be time to revisit - https://m.facebook.com/notes/jan-van-roijen/crawley-quack-therapy/10154818274593322/ :

Subject: Re: SMILE study
Date: Mon, 3 Oct 2016 12:08:19 +0100
From: University of Bristol FOI mailbox <freedom-information@bristol.ac.uk>
To: John Peters <johnpetpub@gmail.com>
Dear Mr Peters
Thank you for your recent Freedom of Information request, as below:
This request concerns this study:

...

The full review procedure is set out at:http://bit.ly/2dq5bdy
Your request for internal review should be submitted to us within 40 working days of receipt of a response.
If you are not satisfied with the outcome of the internal review you may also contact the Information Commissioner’s Office at:

I appealed this decision and got the information.
https://johnthejack.com/2017/07/09/the-smile-trial-part-3/

But it is in any case included in the study published this week.

On the back of that successful appeal, I asked for the data. They replied that it was going to be published in August and then notified me of the delay to this month. I therefore did not refer the matter to the ICO. However, I have now made a new request for the data. I'll get a reply in 20 working days' time.

 

[user9876]

The description of the therapy doesn't talk about standing in magic circles and saying stop to symptoms. As an academic paper it is really doing black box testing on LP and it should be described this way. But in the paper they try to make the therapy sound reasonable as sets of coping strategies and pushing it as gradual goals but with no detail and hence no ability to assess whether these have any validity. Or more importantly there is no ability to assess interactions with a measurement system which is of course something that must be taken great care with when looking at blackbox rather than white box testing strategies.

But they do say "This was followed by group discussion where the language used was discussed and in some cases challenged, and where participants were encouraged to think about what they could take responsibility for and change." which I think should be a red flag to the use of subjective assessment measures as it is clearly saying the intervention tries to change the way people think/describe their disease and symptoms.

This paragraph is worrying in that they are trying to legitimize LP as if it is regulated when really it is just a company.

LP practitioners have completed a diploma through the Phil Parker Training Institute in Neurolinguistic Programming, Life Coaching and Clinical Hypnotherapy. This diploma is examined through written and practical examinations and is accredited by the British Institute of Hypnotherapy and NLP. Following the diploma, LP practitioners undertake a further course to learn the tools and delivery required for the LP after which they must pass both a practical and written examination. Practitioners undertake supervision and continuous professional development in order to further develop their skills and knowledge. They are regulated by the register of LP practitioners, adhere to a code of conduct and there is a Professional Conduct Committee that oversees complaints and professional practice issues.

 

[trishrhymes]

The description of the therapy doesn't talk about standing in magic circles and saying stop to symptoms. As an academic paper it is really doing black box testing on LP and it should be described this way.

Does anyone know whether the ethics committee that approved this trial were given a detailed description of what is actually done in the LP 'training' and what the children would be told they were and were not allowed to tell other adults about the process.

If there was any doubt or confusion I would expect them to be able to send one of their members to attend a course to see what actually happens. (Edit to add: preferably incognito). They had a child protection responsibility to look into this, as did Esther Crawley and her team.

If they were also presented with it as a 'black box' how could they know what they were approving.

Where does the buck stop?

 

[Invisible Woman]

I wonder if part of the problem comes back to the way they view ME as an illness. So the logic might be:

1. Standing on a piece of paper shouting stop & reciting a bit of poetry can't hurt anyone.

2 Most people (especially young people) recover by themselves anyway and therefore it's not a serious condition.

Of course, we and scientists like Davis, Geraghty & our Norwegian heroes know differently. That most older people don't simply recover, that quality of life can be very poor. That young people can relapse badly in later life.

Most tragic is that if some of the youngsters involved in the trial do have ME and ignore their symptoms it might destroy their chances of spontaneous recovery because they didn't rest& take time out.

 

[Sean]

This paragraph is worrying in that they are trying to legitimize LP as if it is regulated when really it is just a company.

Is LP Practitioner (or some variant) a protected title in the UK?

I am guessing not.

 

[Art Vandelay]

The description of the therapy doesn't talk about standing in magic circles and saying stop to symptoms. As an academic paper it is really doing black box testing on LP and it should be described this way.

I think our rebuttals of this study should always describe exactly what the LP consists of. We need to highlight just how ridiculous it is.

I'm reminded of the South Park episode that criticised Scientology. The most powerful points made in the show were merely statements of the more ridiculous Scientology beliefs simply with a caption along the lines of "this is actually what Scientologists believe". They didn't have to parody it, because it parodies itself.

EDIT: amusing clip from that South Park episode as an example.

 

[user9876]

Those who had not responded within 1 week were sent a reminder letter with a reduced set of questionnaires (SF-36-PFS, Chalder Fatigue Scale and school attendance). From February 2011, non-responders were telephoned by a researcher and the SF-36-PFS and Chalder Fatigue Scale were completed over the phone to improve follow-up rates.

I seem to remember reading about differences in scores depending on whether forms were filled out at home or in a clinic. Doing so over the phone could introduce a whole new set of biases particularly where the active treatment is known.

 

[Invisible Woman]

I seem to remember reading about differences in scores depending on whether forms were filled out at home or in a clinic. Doing so over the phone could introduce a whole new set of biases particularly where the active treatment is known.

It certainly could. It could also lead to people feeling pressured to rate the treatment more highly. At the very least it would give the person less time to consider their responses.

 

[Daisymay]

I think our rebuttals of this study should always describe exactly what the LP consists of. We need to highlight just how ridiculous it is.

I'm reminded of the South Park episode that criticised Scientology. The most powerful points made in the show were merely statements of the more ridiculous Scientology beliefs simply with a caption along the lines of "this is actually what Scientologists believe". They didn't have to parody it, because it parodies itself.

EDIT: amusing clip from that South Park episode as an example.

Absolutely right, if people are unaware of what is involved with LP, how absurd and ridiculous it is,they will be taken in with the neuro-physiological bull and think it is legit. And you certainly aren't informed in the paper or in any of the TV or media articles and I bet you the ethics committee also weren't told.

Has anyone been able to get hold of the info the ethics committee were told about LP?

 

[Art Vandelay]

Absolutely right, if people are unaware of what is involved with LP, how absurd and ridiculous it is,they will be taken in with the neuro-physiological bull and think it is legit. And you certainly aren't informed in the paper or in any of the TV or media articles and I bet you the ethics committee also weren't told.

Exactly. We can criticise the biased methodology, lack of a control group and blinding etc until we're blue in the face, but experience has shown us that people (particularly journalists and doctors) simply don't care about those issues because they are scientifically illiterate.

We have to use ridicule to get them interested. Then, we might have an opening to explain why the study claimed a positive result.