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

I finally gritted my teeth and waded through the whole of the 39 page document at the head of this thread.

My summary: Take a group of long term ME sufferers who are well enough to attend group sessions lasting several hours. Vet them carefully to weed out the scientifically inclined and to include the lonely, desperate and suggestible. Provide them with a group facilitator and a role model of someone who has 'recovered'.

Get them to talk about their experiences guide them towards focusing on being on a 'path to recovery', with focus on listening to their bodies in some sort of semi mystical mumbo-jumbo way, and to redefine what 'recovery' means for them.

Work on building a supportive positive group dynamic, a mix of encounter group, religious cult 'love bombing' techniques and psychobabble.

Encourage them to put a positive spin on everything as part of their recovery journey. Build up as heroes and role models anyone who makes any claims of recovery. Do it all in a highly charged atmosphere where people get a buzz out of being creative with their recovery stories. Where being negative or sceptical is not an option.

Write up the 'research' with a weird mix of self indulgent 'poetry' and waffle dressed up as storytelling mixed up with long words like heuristic and bits of psychobabble.

I feel sick.

Edit to add: And this foolish person is currently working on a PhD on this junk.
 
Trish said:
I finally gritted my teeth and waded through the whole of the 39 page document at the head of this thread.

My summary: Take a group of long term ME sufferers who are well enough to attend group sessions lasting several hours. Vet them carefully to weed out the scientifically inclined and to include the lonely, desperate and suggestible. Provide them with a group facilitator and a role model of someone who has 'recovered'.

Get them to talk about their experiences guide them towards focusing on being on a 'path to recovery', with focus on listening to their bodies in some sort of semi mystical mumbo-jumbo way, and to redefine what 'recovery' means for them.

Work on building a supportive positive group dynamic, a mix of encounter group, religious cult 'love bombing' techniques and psychobabble.

Encourage them to put a positive spin on everything as part of their recovery journey. Build up as heroes and role models anyone who makes any claims of recovery. Do it all in a highly charged atmosphere where people get a buzz out of being creative with their recovery stories. Where being negative or sceptical is not an option.

Write up the 'research' with a weird mix of self indulgent 'poetry' and waffle dressed up as storytelling mixed up with long words like heuristic and bits of psychobabble.

I feel sick.

Edit to add: And this foolish person is currently working on a PhD on this junk.
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Well if this is being inflicted on severe patients this is up there in the evil bar steward rankings. IMO
 
Honestly, it would be just wonderful: positive thoughts and - ca-ching! Then I'm rich, healthy, beautiful and...whatever...

..although I would be very happy about the health alone...

And honestly, I tried these things in the past. I was a short time into "positive thinking". I also tried self-hypnosis. It wasn't expensive, so why not give it a try? It just didn't work. And I'm most certainly sure I didn't fail since I didn't believe or thought positively enough.

I also know religious, esoteric and guru-like groups. It's not for me. In some cases it's even dangerous, so I'm always a bit suspicious. This RyB group makes me suspicious and uncomfortable. I mistrust NLP although many people swear by it.

For me it's unbelievable something like this is publicly funded (via taxes). ME science really could need any cent for real research.
 
''I found a way of researching both for the present and the future that fits the purpose of my on-going enquiry and that reflects my personal way of being. It’s a process that draws from and builds on the creativity in which I engage; in my everyday life, as an occupational therapist, and as a Social Sculpture practitioner.''

This is how the author describes herself.

Social Sculpture practitioner, anyone? No, me neither.
 
Trish said:
''I found a way of researching both for the present and the future that fits the purpose of my on-going enquiry and that reflects my personal way of being. It’s a process that draws from and builds on the creativity in which I engage; in my everyday life, as an occupational therapist, and as a Social Sculpture practitioner.''
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It's all Me Me Me isn't it? (please can I request a Barf emoji?) Just like the rest of the Psycho lot.

images
 
ladycatlover said:
It's all Me Me Me isn't it?
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That's one thing that really struck me too. I got the feeling from reading the document that she was having a terrific time being wonderful and creative.

My heart goes out to any severely ill ME sufferers who stray into their playground to have their heads messed with in their game of 'you can play with me so long as you pretend you're recovering'.

What happens to the patients afterwards when the warm glow wears off and they realise they are just as sick as when they started, and the guilt comes crashing in as they think they failed because they didn't try hard enough.
 
Slightly off-topic, but if you will allow me..
My sister-in-law sent me an email a month ago saying she had just heard about the Lightning Process, and it sounded very exciting- and had I? I didn’t reply because I didn’t know how to without potentially causing upset...
But I talked with her recently, and she had gone away and done some reading. She apologised for suggesting it to me and said she was appalled that this was being promoted.

My jaw hit the floor! A very pleasant surprise - particularly given that she has been studying psychotherapy!

So maybe there is hope that the message about these ‘therapies’ is finally changing..
 
Daisybell said:
My sister-in-law sent me an email a month ago saying she had just heard about the Lightning Process, and it sounded very exciting- and had I? I didn’t reply because I didn’t know how to without potentially causing upset...
But I talked with her recently, and she had gone away and done some reading. She apologised for suggesting it to me and said she was appalled that this was being promoted.
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That's fantabulous! :)

Why not ask her what she thinks about the above paper on social sculpture? Psychotherapy isn't at all like "social sculpture" - she'd probably be horrified by it. But don't feel you have to of course. :)
 
Trish said:
''I found a way of researching both for the present and the future that fits the purpose of my on-going enquiry and that reflects my personal way of being. It’s a process that draws from and builds on the creativity in which I engage; in my everyday life, as an occupational therapist, and as a Social Sculpture practitioner.''

This is how the author describes herself.

Social Sculpture practitioner, anyone? No, me neither.
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B S practitioner
 
Trish said:
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
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This sounds like the study that AFME made the centre piece of their "Severe ME Symposium" day in 2014. I had an frank exchange of views with George Lewith that day. HE has since passed away. I was hoping that this has gone with him but obviously not.
 
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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This is an entirely inappropriate comment. It insinuates that girlieness is shameful and insulting, and furthermore associates it with non-seriousness and bad methodology. Neither of these insinuations has any basis in reality.

Many scientists are girlie. Yes, it's possible to be girlie AND to use controlled methodology to reduce risk of bias. And amazingly, girlie scientists are just as smart as non-girlie scientists. Perhaps if we had more such scientists, we would see fewer stereotypically feminine images being used inappropriately to shame bad methodology.

Come on Jonathan, the methodology is shameful enough on its own. Argue on the merits, not "ad feminam". There's no place for that here.
 
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