Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

Jonathan Edwards said:
Yes, I understand entirely what is meant. The author does not want to impress with superior intellect but rather with togetherness with the girlie spirit. It is all about running across the lawn in your nightie rather than using controlled methodology to reduce risk of bias. As all girlies know, running about in your nightie is much more REAL than any silly sums. It feels really 'heuristic' - such a lovely word like the wind between your legs. And intertwining - such fun. Oh how lovely. And deeply satisfying. A few ponies would help.
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bit too cold for that at the mo - so maybe it only works in the summer. Or maybe being chased by the pony helps keep you warm
 
Data analysis was through a heuristic process, intertwining participants’ narratives and my own reflections, and through metaphor, images and poetic narrative identifying salient experiences within the programme.
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As data analysis goes, that's about as psycho-anal as it gets.
We acknowledged within the group that the concept of recovery in CFS/ME is individual and therefore can only really be expressed individually.
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Objectively speaking of course :p:sick:.
 
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One of the reported 'achievements' from this project was the creation of this blog: https://inturnship.wordpress.com/about/

Nothing posted on it yet.

It looks like this NLP thing is being assessed in a feasibility trial paid for by NIHR.

It looks like there may be no control group, but they do say that for a secondary outcome they have "electronic activity and sleep measurement"

They say results will be available in 2016, but I could not find anything.

From an abstract Dolphin found at an NLP conference:

Feasibility study for a community based intervention for individuals with severe
CFS/ME.
Clare McDermott, Sarah Frossell, Dr Selwyn Richards, Prof George Lewith, Prof Paul Little,
Prof Diane Cox, Dr Geraldine Leydon, Dr Caroline Eyles.

Background
Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitating fatigue, pain and
other symptoms. Severe CFS/ME can lead to patients becoming housebound or bedbound.
1
There is little published research on this patient group.
Method
Design
Feasibility and acceptability study of a community based intervention for adults with
severe CFS/ME, with qualitative and quantitative evaluation. Design based on the Medical
Research Council Guidelines for evaluating complex interventions.
2
Setting:
Domiciliary care delivered by multi-disciplinary teams based at specialist NHS CFS/ME
services.

Participants
20 patients diagnosed with CFS/ME [Centers for Disease Control (1994) criteria]
3,
who are severely affected [Cox & Findley (1998) criteria].
4
Intervention :
Recovery strategies based on the Neuro-Linguistic Programming concept of ‘modelling
success’, adapted for use in severe CFS/ME through in-depth Patient and Public Involvement
development work conducted over two years. The intervention includes a range of NLP
techniques, delivered through audio-recordings, direct therapist contact and social contact via
peer recovery support group.
One year active intervention + one year support and follow-up.

Primary measure
Clinical Global Impression of Change
Secondary outcome measures include
-
Electronic activity and sleep measurement
-
Patient reported outcome measures on fatigue, pain, physical function, anxiety,
depression, self-efficacy and quality of life.
-
Therapist completed outcome measures on physical function.

RESULTS
This study is currently recruiting patients in Dorset and Oxford. Results will be available in
2016.
The study is funded by the National Institute of Health Research (NIHR) and has been peer
reviewed by the National School of Primary Care Research.
(1)
National Institute for Heath and Clinical Excellence (NICE). Chronic fatigue
syndrome/Myalgic encephalomyelitis (or encephalopathy): diagnosis and
management of CFS/ME in adults and children. NICE clinical guideline 53. 2007.
London,
National Collaborating Centre for Primary Care.
(2)
Medical Research Council. Developing and evaluating complex interventions: new
guidance. 2008.
(3)
Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff
A. The chronic
fatigue syndrome: a comprehensive approach to its definition and study. International
Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994; 121(12):953-
959.
(4)
Cox D, Findley LJ. The management of chronic fatigue syndrome in an inpatient
setting: presentation of an approach and perceived outcome. British Journal of
Occupational Therapy 1998; 61(9):405-
409. (3) MRC guidelines
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https://anlp.org/files/2014-abstract-summary_11_378.pdf
 
Jonathan Edwards said:
The author does not want to impress with superior intellect but rather with togetherness with the girlie spirit.
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When it comes to drippy 'compassionate' nonsense dressed up in pseudo-intellectual prose, not many girls are going to be able to beat Vincent Deary!

Sbag said:
There is a poster on that site (https://www.oxfordhealth.nhs.uk/wp-content/uploads/2014/01/RYL-poster-Feb-15.pdf) so not sure if that is the same one that was used for CMRC
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Thanks for that. I've uploaded the poster here, as things like this can go missing right when you want them!

I've heard bad things from others about the Oxfordshire NHS ME service.
 

Attachments

I've heard bad things from others about the Oxfordshire NHS ME service.[/QUOTE]

I wanted to find out who the GP is that runs the clinic, if you know anyone that went there could you ask?
 
Woolie said:
Yea, thank you for not genderising this. There is no need. Plenty of examples on both sides of the gender divide.
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I don't think it's about the gender of the author, so much as the exploitation of gender to sell something to a specific audience. E.g., the "gift-giving" pyramid scheme that's been popular on Facebook around Christmas time, dressed up as woman-power sisterhood to conceal the greed, inequity, and hierarchy (and fraud) inherent in such schemes.
 
This 'treatment' is run by my local ME service (Dorset) which, when I had contact with it up to 6 years ago was uncontroversial, run by an OT and based on pacing using activity diaries and relaxation. I even had a good conversation with her in 2011 when the first PACE paper came out where we discussed its obvious flaws - (I was completely unaware then of just how bad PACE was).

Then that same OT in charge started telling me about her contact with the local Lightening Process practitioner and enthusing about LP. I did a bit of on-line digging and decided I didn't want anything to do with this, so discontinued contact with the ME service.

When I found out a few months ago about how this initial contact with LP seemed to have evolved into this weird NLP based 'treatment' being inflicted on local severe patients, I looked it up and found this publication, one of whose listed authors is that same local OT:

BMC Complementary and Alternative Medicine 2017, 17(Suppl 1):317
http://insight.cumbria.ac.uk/id/eprint/3074/1/Cox_FeasibilityStudy.pdf

P119 Feasibility study for a community based intervention for adults with severe Chronic Fatigue Syndrome/ ME

Clare McDermott1 , George Lewith1 , Selwyn Richards2 , Diane Cox2 , Sarah Frossell3 , Geraldine Leydon1 , Caroline Eyles1 , Hilly Raphael3 , Rachael Rogers4 , Michelle Selby2 , Charlotte Adler2 , Jo Allam2 1 Primary Care and Population Science, University of Southampton, Southampton, SO16 5ST, United Kingdom; 2 University of Cumbria, Carlisle, United Kingdom; 3 Rebuilding Your Life Project, Oxford, United Kingdom; 4 Oxfordshire CFS/ME Service, Oxford, United Kingdom Correspondence: Clare McDermott; George Lewith BMC Complementary and Alternative Medicine 2017, 17(Suppl 1):p119

Background

Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitating fatigue with many bedbound patients. The study aims were
To determine whether a new intervention could be successfully delivered. To collect quantitative outcome data to guide the design of future studies. To explore qualitatively the experience of patients, carers and clinicians.

Methods

Mixed-methods feasibility study with qualitative and quantitative evaluation.
Participants: 12 UK patients who were housebound with severe CFS/ME.
Intervention: Based on recovery skills identified through a 2.5 year Patient and Public Involvement development process involving individuals with first-hand experience of recovery from CFS/ME, as well as current patients and clinicians.
The resulting one year intervention, delivered by a multi-disciplinary team, included domiciliary therapy visits and optional peer support group.

Quantitative outcome measures:
Patient-reported and therapist reported outcome measures (including fatigue, physical function, anxiety, depression and other variables) and electronic activity measurement.

Results
The study recruited and engaged twelve participants with no serious adverse events or dropouts.

At end of intervention, 5/12 participants had improved in fatigue, physical function.

Group mean scores improved overall for fatigue (Chalder fatigue scale), physical function (activity and physical function scale) and anxiety.

Qualitative interviews suggested that the intervention was acceptable to patients, whilst also highlighting suggestions for improvement.

Participants will be followed up for a further year to find out if improvements are sustained.

Conclusion
This is the largest study ever conducted in severe CFS/ME and shows significant recovery suggesting further studies are indicated. Treatment is uniquely based on a patient inspired intervention.
...............................................................................................

This seems to be all the available information.

I contacted the University of Cumbia data holder to try to get the data from this study, and was referred to Claire McDermott, one of the corresponding authors.

She was out of the country at the time but said she would get back to me on return. She later said she was long term elsewhere and would pass my request on. I have heard no more. I note that the other corresponding author Dr George Lewith died earlier this year.

I am now in a quandary as to whether to pursue this.

Part of me says, it's junk, forget it. But if it's being spread like a toxic algal growth to other areas on the strength of this one preliminary study whose data is unavailable, this is troubling. I guess I'll have to try again to get the data.
 
George was once a good friend of mine but he got heavily into quackery. My hope is that whatever review NICE undertake it will at least identify the lack of valid evidence for LP. Even the CBT/GET people will want to ensure that. The worry is that ME/CFS management is widely delegated to OTs who may be allowed to muck about with whatever they like.
 
Wonko said:
I have to ask, are ponies sufficient, or would, for the best results, unicorns be required?
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Or you can have the best of both worlds... A unicorn pony with wings! :rofl:

images
 
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