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

user9876

Senior Member
Messages
4,556
Prescribed medicine costs at 6 months seems quite different with LP+SMC group having costs av cost of £47 but SMC just 17. The SD for the LP+SMC group is high which could mean a high cost for an individual. At 3 months SMC+LP have an av cost of £34 vs £25 for SMC and at 12 months its 32 vs 18. I'm not sure what to read into this and its not fully reported. But it feels like differences between the groups.
 

user9876

Senior Member
Messages
4,556
Web Appendix 1: Multiple imputation methods

Multiple imputation by chained equations (ice procedure48 version 1.9.7 dated 25/10/2014) was used to impute missing data for 50 datasets. The imputation model included age, gender, SF-36-PFS, Chalder Fatigue score, VAS, SCAS, EQ-5D-Y, questionnaire costs and outpatient costs based on hospital records at all time points. Linear regression was used to impute SCAS and VAS whilst predictive mean matching was used to impute SF-36-PFS, Chalder Fatigue score, EQ-5D-Y and questionnaire costs due to non-normality of the data.

I'm not sure what the implication of this is (are they missing at random?) @Woolie @Sidereal any opinion?
 

Sidereal

Senior Member
Messages
4,856
I'm not sure what the implication of this is (are they missing at random?) @Woolie @Sidereal any opinion?

Impossible to say from the quoted paragraph.

Edit: Generally, in clinical trials, you'd be hard pressed to find a situation where the data are missing completely at random. However, missing at random can be achieved sometimes by using models like what they're doing here, using multiple variables to predict 'missingness'. The problem arises when people are dropping out for reasons that can't be predicted from observed variables. For instance, they might be dropping out due to a bad outcome. In that case your data are missing not at random and your results are therefore not reliable.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
They'll tell you they couldn't get that data, as it would breach some confidentiality between the school and the pupil.
To make it less of a subjective memory thing, they could have handed sheets to the parents to fill in regarding attendance each day. But that might give actual results instead of perceived changes. o_O

They'll surely have trouble with that argument because they did exactly that in another study they published recently. My opinion is that they breached the DPA in the other study, but they can't have it both ways.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
I think we know from @JohntheJack that is was rejected from elsewhere.

Yes, it was submitted to Lancet Psychiatry last year.

Paragraph 20 here:

https://ico.org.uk/media/action-weve-taken/decision-notices/2017/2014139/fs50657225.pdf


Given the nature of this dataset, access is controlled. Requests are referred to the University of Bristol Data Access Committee for approval before data can be released under an appropriate data access agreement. For details on how to access data, see the repository record at http://dx.doi.org/10.5523/bris.1myzti8qnv48g2sxtx6h5nice7.

For those who were wondering about the data, they received my email before office hours this morning. 20 working days for the response.
 

Dolphin

Senior Member
Messages
17,567
There is only one study23 investigating LP which used qualitative interviews to explore the views of nine 14–26 year olds about their experiences. The main difference between LP and CBT appears to be the emphasis placed on physiological responses and causal attributions23 but we do not know whether these explain the greater effectiveness of LP
It looks to me like they might be minimising the number of differences with CBT, maybe to try to say that CBT might work similarly well with adjustments.

Given that LP involves hypnosis/similar, it doesn't seem that similar to CBT.
 

Dolphin

Senior Member
Messages
17,567
I don't think you get a very thorough idea of what LP is from the paper:
The Lightning Process (LP) is developed from osteopathy, life coaching and neurolinguistic programming and is used for a variety of conditions including CFS/ME. Clients read information, attend three group sessions and then receive follow-up phone calls.23
Participants randomised to SMC+LP were asked to read information about LP and complete an assessment form with their parents to identify their goals and describe what they had learnt. They then had a telephone call with an LP practitioner (online supplementary appendix 1) to discuss attending an LP course consisting of three 4-hour sessions on consecutive days run with groups of two to five young people. Each had a theory session with taught elements on the stress response, how the mind and body interact, and how thought processes can be either helpful or negative. 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. In the practical session, participants identified a goal they wished to achieve (such as standing for longer) and were given different cognitive (thinking) strategies before and while the goal was attempted. They were also asked to identify a goal to attempt at home. After the course, young people were offered at least two follow-up phone calls with an LP practitioner.

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.
 

Sidereal

Senior Member
Messages
4,856
I tend to think that this therapy -- any therapy -- should be tested on ME/CFS adults before claiming that it works. Adolescents with this illness tend to have high rates of spontaneous improvement and even remission in the absence of any treatment. When I was 16 I was quite severely affected and it went away after a few years with no diagnosis and no treatment. When the disease occurs (or recurs) in adults, it tends to be much more refractory and thus a better test of therapies purporting to work.

If I were an enthusiastic young career climbing paediatrician, I could probably carve out quite a nice little niche for myself in the 'fatigue' field prescribing placebo therapies and patting myself on the back whilst watching the resilient kids getting better while the more redox-challenged ones deteriorate which I could always rationalise away by saying it wasn't CFS anyway and they're just mentally ill or it was CFS but now they've got an acute stress reaction from being ill and need sectioning and thus my treatment worked after all.
 

helperofearth123

Senior Member
Messages
202
I have emailed the ring leader of this criminal scam and await her reply. If my views expressed in my previous post in this thread are wrong, she should easily be able to explain why I am wrong and how she is not scamming the NHS. In which case I would be happy to change my mind and move on. The clock is ticking.

Everyone in the UK should write to their MPs about this. I am preparing a letter myself.
 
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user9876

Senior Member
Messages
4,556
They'll tell you they couldn't get that data, as it would breach some confidentiality between the school and the pupil.
To make it less of a subjective memory thing, they could have handed sheets to the parents to fill in regarding attendance each day. But that might give actual results instead of perceived changes. o_O
They did claim to have permission to access attendance data in their stats plan
 

Esther12

Senior Member
Messages
13,774
I have to post again such is my rage. I have emailed the ring leader of this criminal scam and await her reply. If my views expressed in my previous post in this thread are wrong, she should easily be able to explain why I am wrong and how she is not scamming the NHS. In which case I would be happy to change my mind and move on. The clock is ticking.

Everyone in the UK should write to their MPs about this. I am preparing a letter myself.

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.
 

Starlight

Senior Member
Messages
152
Ms Crawley will definitely have to do a follow up to this. She stated yesterday that she couldn't be sure that LP would work alone.If that was what they were trying to find out why did they not do LP only with one group.. I almost found myself feeling sorry for her today when I read that she became interested in LP because the children were asking her to do it with them!!!!.She mustn't have had the heart to say no to them. This is completely incredible nonsense.She has no problem saying no to the adults who are according to her are bitter from being sick for so long,and she seems to be doing her very best to ensure we stay sick. She also felt the necessity to mention the dangerous activists among us that she has had to contend with. More lies. If these children had ME she took a huge risk with their health. She must have been pretty sure that they would not be adversely affected or this would have been a fiasco for her from which it would be hard to come back. I imagine the cohorts were very carefully chosen. It seems to have been well designed to achieve the desired outcomes
 

Valentijn

Senior Member
Messages
15,786
I don't think you get a very thorough idea of what LP is from the paper:
The LP pre-assesment form (archived 2011) from the trial gives a better idea:
....

School/College/Occupation: _____________________________________________

Are you ready to take the training?
The Lightning Process® (LP) is a training programme, not a treatment or a therapy so you need to be ready to learn.

The first step of the training is to read/listen to the book/audio book "An Introduction to the Lightning Process", this will help prepare you for the seminar itself. Please do talk to other people who have done the course and watch the videos/read the testimonies on www.lightningprocess.com

Your Lightning Process Practitioner will contact you by phone to introduce themselves, ask questions with regard to your understanding of the Lightning Process and answer any questions you may have.

Expectations:

What I expect from you:
That you are ready and committed to do the work required by the course.

What you can expect from me, your trainer:
  • I am completely committed to your success.
  • I may ask you to change any behaviours that could prevent you getting the success you deserve.
  • Even though it may not always be what you want to hear, I will give you no-nonsense, honest and essential feedback.

1. Have you read the book/listened to the audio book/had the book read to you? (delete as appropriate)

2. Do you believe you can get better? Yes/No/Maybe
3. Do you feel you can influence your own health? Yes/No/Maybe

4. Are you willing to attend and participate in the discussions, training and coaching sessions? Yes/No/Maybe

5. Do you feel doubtful, cynical about the LP or just
want to give it a go to see what happens? Yes/No/Maybe

6. Do you feel that you are ready to take the course? Yes/No/Maybe

....

10. Do you know of someone or have you spoken to someone who has used the Lightning Process to recover their health? Yes/No

11. Have you applied to take the training before? Yes/No (If no go to question 12)
If yes which trainer did you apply to: _________________________________
and when: _______________________
What has changed for you since applying to that trainer?
I may need to speak to that trainer about your case, please confirm that you give me permission to do this. Yes/No

12. Are you analytical (do you spend a lot of time questioning and examining things)? Yes/No/Maybe
We know it is valid in some situations to analyse and question, but what we have found during the Lightning Process training, is that those who spend time analysing what they are learning INSTEAD of applying the Process, get in the way of their own progress. You need to have done your research and questioning before the training so that you can get the most from it.

13. Confidentiality
The Lightning Process is a training programme, not a therapy, and there is no requirement for you to share personal information with other members of the group, but some people may choose to do so. Do you agree to maintain confidentiality with regard to personal information shared by others during the training? Yes/No

Training Agreement
You should only sign this assessment form if you agree to these following statements

“I understand that the Lightning Process is a training programme. I understand that the Lightning Process is not a miracle cure and requires commitment and work to be successful. I recognise that the mind and body can powerfully influence each other. I am prepared to look at my illness, health and future in a new way. I am prepared to look at my opinions, thoughts and understanding about my health. I am totally prepared to do the work required.

I promise that during the training I will be available for coaching to achieve success, be open to feedback and am prepared to change anything that my trainer identifies could limit my success.”

Signature: ___________________________ Date: _______________________

Terms and Conditions

Ownership
All documents you receive as part of your training constitute the intellectual property of Phil Parker and are not to be reproduced, sold or distributed in anyway.

Copyright Notice
The purpose of the Process is to apply it to resolve your personal issue/s. Participation in the Process does not amount in any way to permission to reproduce any of the techniques or materials (including graphical images, text, audio or visual presentation) that are demonstrated or provided.

....

Who should accompany you to the Lightning Process seminar?
It is not essential that you have someone with you when you attend the Lightning Process course. However, it is a decision for you to make with your parents/guardian as to whether you come on your own or whether you wish to bring a parent/guardian, family member or friend to sit in with you in the seminar and to help with your learning.

Your parents/guardian, family member or friend will care deeply about you and your future. We have found that the kinds of qualities ideal for someone who attends to support you in your learning are:
  • Being fully supportive of you in understanding and applying the training
  • Being ready to leave their preconceptions and beliefs behind
  • Being positive and able to inspire you
For the following information please note that the young person taking the course is referred to as "the student" and the accompanying person as the student's "Learning Facilitator"

And for the "Learning Facilitator:
....

Occupation: ________________________________________________________

Information for Learning Facilitators
How the training is conducted
Much will be demanded from you and your student over the three days of the seminar, but if you both take on the challenge then the rewards are extraordinary.

The trainer has a very demanding role during the seminars. They have to not only present the material but also manage and assist your student as they go through the very challenging Process. There are certain ground rules and understandings that will make the training easier for both you and them.

The trainer is completely committed to your student's success, as a result:
  • They will ask you to change any behaviours that prevent your student from getting the success that they deserve.
  • They will deliver no-nonsense, honest and essential feedback, to both you and your student - do not mistake this as not caring.
  • They will not always say what you or your student want to hear.
  • If what you, or your student, are doing is going to cost your student their success they will tell you, or your student, even if it risks you being annoyed with them.

Your Role
The Lightning Process is not a miracle cure and requires commitment and work to be successful, however the results can be extraordinary.

It helps if you are positive about their decision to do the Process, and support the effort they are putting in. It may be something you have not come across before, so please find out more about it if you are doubtful or skeptical.

You will have the opportunity to speak with the Lightning Process Practitioner prior to the course in order to ask any questions that you may have.

Conditions
We reserve the right to terminate your student's training or your attendance if we feel your continued participation would be unhealthy or unhelpful for your student or another member of the training group.

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

Attachments

  • LP pre-assesment form.pdf
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