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

Esther12

Esther12

Senior Member (Voting Rights)
@Sbag posted this in another thread, but I thought it was worth it's own.

"Co-creating recovery in CFS/ME:
A reflexive exploration of a Rebuilding your Life
programme
Hilly Raphael (Quigley)
October 2015
(final version with Addendum -
participants’ responses Nov 2015)"

Sbag said:
It seems that poetry and scientific studies in ME is more prevalent than we thought - I found this "research" article the other day and was flabbergasted the more I flipped through it. I haven't brought myself to actually read it properly because it really isn't worth the energy, but if you want a laugh then have a look and I'd love to see what you all think.
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It say things like:

"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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"Most significantly, it seemed to me that people absorbed within themselves the
image of the recovered Annie, and that this triggered their own recovery process.
Many of them recognised and reflected on the importance of having an image of
themselves recovered in the future as a most significant foundation for their
recovery. This is highly significant and needs provision making for this opportunity.

Using people already recovered as a primary resource for the recovery of others, is a
natural and proactive way forward. It has to date been undervalued and underused.
As Smith recalled,
“It is suggested that people who accomplish remarkable recoveries may
possess practical knowledge not yet captured by a purely theoretical account of
disease.. It seems the person in our society who survives against the odds is
undervalued. (Cancer survivor).12"
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I probably don't need to point out that some people are lucky. They recover from cancer when others die. That doesn't necessarily mean that we should try to learn from their 'accomplishments' and 'practical knowledge'. If you want to get rich, studying the mindsets of lottery winners may not be a good use of your time.

I have to warn you that there are poems included too. I'm not posting them here. I'm actually not posting the most annoying bits, as they go too far.

There's things like this LP-style stuff:

It wasn’t until starting this study that I really considered deeply about being without a
voice and what that means in terms of the body. “Your body believes every word you
say”, Sarah reminded us a number of times. And at the 14 end of some sessions as
she suggested what we might attend to in the interval before our next meeting, “Tell
your body that it’s starting to heal”.
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So people are encouraged to believe that saying positive things about their health is good for their health, then this is seen as being good for their health because they say positive things about their health?

"I've got lots of money, I've got lots of money..."

Has your mantra really helped improve your financial situation?

"I've got lots of money, I've got lots of money..."

We're all going to be rich!

Where participants felt disappointed was that they were keen for more sessions, to
enable them to work out how to continue on their recovery pathways towards
sustained resilience. (There have subsequently been four more follow-on sessions,
and ideally, the group would have liked a few more).
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They were so loving being recovered, that they just felt they needed to be a bit more recovered.

They did a poster for BACME:

The group decided to co-create a poster for the annual conference of British
Association for CFS/ME. This became an interactive process between the
development of the ideas that they wanted to convey and the poster design. The
result was a resounding recognition by participants that they had found a voice, in
addition to their own image of recovery. Interestingly this identification was
emphasised by engaging in this process. The poster has now been exhibited on
several occasions and is also used to communicate an initial recovery message to
people who are newly referred to our service. (Appendix 1 and 2).
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Although it now seems to be unavailable.

A good thing: In the appendix there are responses from participants to the report, and I think this is a good thing to do. I'd like it if the participants of all qualitative research had an opportunity to put their un-edited comments on the researcher's paper in an appendix.

There was also this from a professional, which could be seen as indicating a hunger for a new fad as awareness of the problems with CBT/GET spread:

Over the last 10 years I have found it very challenging working with
people with very severe and complex presentations. I have felt
increasingly powerless and helpless as the ‘traditional’ treatments offered
such as CBT and GET have proved to be ineffective for many that we work
with. Many of the participants attending the group have been ill for many
years and have tried the traditional approaches and multiple interventions
with little or sustained success. The RyL has provided me, as a therapist,
with hope and a sense of excitement and a new way of working in the
future.
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Attachments

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Looks like they also did a performance:

Voicing body and embodying voice - a performance
Hilly Raphael, Jenni Mair, Sarah Frossel

Building: Queen Anne
Room: Duncan Classroom QA110
Date: 08-07-2016 11:30 – 12:00

Abstract
Rebuilding your Life (RyL) is a recovery-focused programme developed by those recovered and recovering from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and healthcare professionals(McDermott, 2015). Its ethos of co-enquiry enables all participants (recoverers and facilitators) to be equal collaborators (Raphael, 2015). The main facilitator, Sarah Frossell, uses Neuro-Linguistic Programming (NLP) and coaches each person within the group by truly attending to the voice of their body in terms of the illness and of their return to wellbeing.

Jenni Mair (recovered after eighteen years of CFS/ME) and Hilly Raphael (a RyL cofacilitator) celebrate the restorying they experienced through RyL. They’ve identified concepts of each finding a voice, further enabled through their collaboration(Raphael, Mair and Frossell, 2015). They explore the voice that Jenni discovered which empowered her to acknowledge aspects of life previously un-voiced, and to create an image of a positive future which she’s already entering. They acknowledge the role of voice as a conduit of emotional and bodily stories, which transition from the internal to the external body, and from one to another; ultimately when attended to enabling healing and transformation.

This reflection, acting as a meta-performance, explores the initiation of recovery through voice and body performing.

Keywords: voice, body, healing, recovery

References:

McDermott, C. (2014) Patient and Public Involvement: Case studies in primary care research, National Institute for Health Research, p22-24. Available at http://www.spcr.nihr.ac.uk/PPI/rp/ case-studies-final-november-website.pdf (Accessed 05/06/16)

Raphael, H. et al. (2015) Co-creating recovery in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) - Rebuilding your Life group programme Available at: http:// www.oxfordhealth.nhs.uk/resources/2014/01/RYL-poster-Feb-15.pdf (Accessed 05/06/16)

Raphael, H; Mair, J; Frossell, S. (2015) ‘Finding new voices for recovery: A narrative from co-learners in an innovative group programme’, European Journal of Integrative Medicine, 7, supplement 1, 18-19, Available at: http://www.sciencedirect.com/ science/article/pii/S187638201500205X (Accessed 05/06/16)
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https://showtime.gre.ac.uk/index.php/feh/bt/paper/viewPaper/937
 
I think it would be interesting if someone conducted a study on these LP type approaches in terms of what the mechanisms are behind people completing all the steps of the programme resulting in a completely warped sense of reality. Or is it just plain and simple brainwashing wrapped in a shiny new wrapper?

ETA: I always laugh when I see phrases like: "your body hears every word you say". My body must be deaf then.
 
A 2015 poster:

European Journal of Integrative Medicine
Volume 7, Supplement 1, 25 September 2015, Pages 18–19

Finding new voices for recovery: A narrative from co-learners in an innovative group programme
Oxfordshire CFS/ME Service, Oxford Health NHS Foundation Trust, 11 Talbot Road, Oxford OX2 8LL, United kingdom

doi:10.1016/j.eujim.2015.09.048

Introduction: Finding a recovery pathway from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) can be extremely challenging for individuals who in addition to debilitating symptoms often feel isolated, with diminishing identity. This phenomenological study aimed to explore participants’ experiences within a recovery-focused group programme called ‘Rebuilding your Life’, co-developed by people with and recovered from CFS/ME and healthcare professionals. Facilitated by an expert trainer in Neuro-Linguistic Programming, the programme uses the examples of people already recovered from CFS/ME as models for successful recovery. It has an ethos of co-enquiry between participants (patients and facilitators) as joint and equal collaborators.

Methods: A phenomenological exploration of the experiences of 13 group participants; 9 people with CFS/ME, 1 recovered person and 3 facilitators (including researcher/facilitator). Data collection involved: (1) researcher/facilitator keeping a reflective journal (2) participants’ reviews (individual and group) of their experiences in the programme, with an invitation to co-produce resource(s) for others, recording aspects of their own narratives. Data analysis: A heuristic process intertwining participants’ narratives and researcher's reflections, developing themes through text, metaphor and imagery.

Results: Identification of key themes: (1) gaining hope (2) internalising an image of a personal future recovery (3) finding a voice. A poster was co-produced by the group illustrating these themes, both in its making process and its content.

Conclusions: This group programme may offer a means to developing a recovery-focused community, through its perpetuating format of those who recover becoming models and voicing narratives to on-going cohorts. This concept has potential in many areas of health provision.
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2017 poster:

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 Adler
2, 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

Background
Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitat-
ing 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, in-
cluded 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 im-
proved overall for fatigue (Chalder fatigue scale), physical function
(activity and physical function scale) and anxiety. Qualitative inter-
views 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 indi-
cated. Treatment is uniquely based on a patient inspired
intervention.
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http://insight.cumbria.ac.uk/id/eprint/3074/1/Cox_FeasibilityStudy.pdf
 
@Esther, THANK YOU very much for opening an extra thread, looking deeper in this document and commenting it.

For me personally, British Association for CFS/ME is absolutely lost; I'm so glad I was wised up here.

Sometimes, after reading things like that, I feel very sad and wonder "do we have a chance?" But I won't give up.
 
What can one say?

How is it that official educational establishments are encouraging drivel of this order of vacuousness?

Presumably if White and friends get their way with ten thousand more talking therapists we ill have double the amount of drivel.

Perhaps the one hope is that someone in the present government will identify this as a waste of money worth leaping on.
 
Promotion of 'RyL' (rebuilding your life) here: http://theedge.nhsiq.nhs.uk/wp-content/uploads/2016/10/RyL-information.pdf

I've also attached a copy.

It promotes the relentless 'process' of recovery.

It also includes this:

We’re currently represented at the King’s Fund, Leading collaboratively with patients and communities, in a programme called, Collaborative Pairs, but actually as a trio from RyL (recovering participant, facilitator and researcher) https://www.kingsfund.org.uk/leadership/leading-collaboratively-patients-and-communities
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I think that the King's fund is quite influential, but they seem to be shit, heavily promoting Michael Sharpe's agenda. Pretty annoying that they have this sort of thing as their vision of 'collaboration' with ME/CFS patients.

It looks like Action for ME were promoting Clare McDermot's work at their 2014 Severe ME event:

"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." [now off-line but was reported to have formerly been at: http://www.actionforme.org.uk/get-informed/news/our-news/our-severe-me-event-get-involved]
 

Attachments

Jonathan Edwards said:
What can one say?

How is it that official educational establishments are encouraging drivel of this order of vacuousness?

Presumably if White and friends get their way with ten thousand more talking therapists we ill have double the amount of drivel.

Perhaps the one hope is that someone in the present government will identify this as a waste of money worth leaping on.
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The problem is that they are already claiming CBT etc can be done by dvds and by following online programs. At the same time Theresa May has appointed Wessely in charge of the socialized medicine side of hunting down and labeling more and more people mentally ill using top athletes and royalty to "come out and discuss their mental health problems".

But that's ok isn't it cos your government cares for you and wants to know exactly what you think and correct it with NLP at a time where we have probably the largest income gap between the rich and the poor and the BBC is doing features claiming more and more people are off work with "stress related disorders, anxiety and depression" which they claim is them being mentally ill, instead of them perhaps looking at the reality of the workplace, low wages double work load and rising prices.

Isn't it the case that its logical to be disillusioned about such workplace conditions and normal or are we all falling for the establishment attempt to declare dissent and dissatisfaction as mental illness?
 
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"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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Does anyone understand what is meant? Evidently the author wants to impress with superior intellect, but it's just gibberish.
 
I think it is related to this group which is part of the Oxfordshire NHS ME service - https://www.oxfordhealth.nhs.uk/service_description/oxfordshire-chronic-fatigue-syndrome-me-service/
I think I came across the paper when I was looking up the name of the author in relation to something else and she came up in relation to this "service". 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
 
strategist said:
Does anyone understand what is meant? Evidently the author wants to impress with superior intellect, but it's just gibberish.
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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.
 
Clare has completed her PhD which included a feasibility study for a community inter-
vention for people who were housebound with CFS/ME, in which some people were in-
volved in RyL. The research will conclude in 2017 and it’s hoped that a range of papers
will result from it.
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I'm always astonished how easy it sometimes is to get a PhD.
 
large donner said:
The problem is that they are already claiming CBT etc can be done by dvds and by following online programs.
[...]
But that's ok isn't it cos your government cares for you and wants to know exactly what you think and correct it with NLP at a time where we have probably the largest income gap between the rich and the poor
[...]
Isn't it the case that its logical to be disillusioned about such workplace conditions and normal or are we all falling for the establishment attempt to declare dissent and dissatisfaction as mental illness?
Click to expand...

I like your post very much.
 
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