(NLP) "Feasibility study for a community based intervention for individuals with severe CFS/ME" (UK)

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http://www.southampton.ac.uk/medicine/research/themes/primary_care.page

Primary Care
We are one of only eight Primary Care Research departments that together form the NIHR funded national School for Primary Care Research (SPCR).

[...]

Internet health promotion and disease self-management programmes to increase access
Several of us have worked with Lucy Yardley in Health Psychology developing and evaluating web based interventions promoting lifestyle change (e.g. for obesity and hypertension) and self-management of common conditions (e.g. dizziness, chronic fatigue syndrome, hypertension (Paul Little), irritable bowel syndrome, ACTIB trial (Hazel Everitt), childhood eczema (Miriam Santer), and distress (Adam Geraghty), funded by the NIHR RfPB, HTA and SPCR streams. Having piloted effective websites, large MRC and HTA funded trials are underway for infection transmission, obesity and IBS...

http://www.southampton.ac.uk/medicine/about/staff/ark1.page?#research

Tony Kendrick

[...]

2014-2015 - Little P, Kendrick T.
NIHR SPCR project grant - Fatigue Assessment and Management in Everyday practice (FAME) pilot. £70,529.

 

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Extract, Summary, APPG on ME meeting 13 March 2013:
http://www.meassociation.org.uk/wp-content/uploads/2013/04/APPG-minutes-13.03.13-final-approved.doc

http://www.meassociation.org.uk/wp-content/uploads/2013/04/APPG-minutes-13.03.13-final-approved.doc

[...]

2.2 Speaker: Clare McDermott, University of Southampton

Clare McDermott is a research fellow based at the Department of Primary Care and Population Science, University of Southampton. She has been involved in ME research for over ten years. She has worked on studies involving specialist services in the NHS and has also worked with Dr Jonathan Kerr. Her specific interest is working with patients severely ill with M.E. She herself was severely affected with M.E. in her teens and early twenties, having now regained full health. She commented on the serious gap in the research literature on patients who are severely affected with ME.

Clare McDermott went on to describe innovative pilot work her team have recently completed, designed by people with M.E. for people with M.E. Results from this pilot work have been promising; the NIHR has consequently granted funding for a feasibility study which Clare will be conducting as part of a PhD. Clare shared the ‘Dorset Bespoke Group model for ME/CFS’ handout with the group.

Clare McDermott has worked with Sarah Frossell, Tim Stirgess (Chair of the Dorset M.E. Support Group) and Dr Tudor Thomas, (previous Chair of the Dorset ME Support Group) whose recent death she was shocked and saddened by. The Dorset M.E. Support Group have played a crucial role: through the steering group, financially and in the development work. This has involved over 40 people with ME contributing ideas, skills and insights to the development process, many working alongside the researchers as ‘peer specialists’ (individuals who bring their own experience of improving or getting better from ME to helping others).

An example was given of one peer specialist, who at the beginning of the project had spent many years bedridden in a darkened room unable to even read a book. After the intervention one year on, he is now able to get downstairs and go out in the car. One of his aspirations was to walk in the snow, which he has just achieved. A core part of the programme is to use ‘peer specialists’ who are all people with M.E. who have improved or recovered. This individual is now a much valued member of the project, whose insights and experience has played a key role in contributing to the design of this study.

Clare McDermott said that she would love effective drug therapies for M.E. to be available, but while there are not, this raises the question of what can be done now to improve the health and quality of life of people with severe M.E? She emphasised that the programme regards M.E. as a biomedical illness and works with the individual on how to use strategies to put the body into a healing state. She clarified that the intervention is neither CBT nor graded exercise therapy.

Clare McDermott has been previously involved in studies researching the biomedical side of the illness. She noted there is increasing research evidence that mind-body interaction can put biological systems within the body into an optimum healing state. Such a state can trigger positive physiological changes in a range of bodily systems including the hypothalamic pituitary axis (including the adrenal system), circulatory system and immune system. Having M.E. is very stressful in itself. So the big challenge is how to help the body get into the ‘mending state’ and how to develop strategies in order to equip people to do this as far as possible.

Sarah Frossell, who works with Clare McDermott on this project, described how they help people think about what is a ‘resourceful and flexible state’ and start to create an idea of the possibility of the person being well again. Part of this involves helping them to feel more control of their situation and giving them choices as to how to deal with practical issues as they arise. This can lead to greater self-confidence, enhanced mood and quality of life.

Initial pilot work has involved six people who were severely affected. This pilot work is now about to lead into a feasibility study. The intervention will consist of a consultant-led, multi-disciplinary approach involving Occupational Therapists, GPs with a special interest in M.E. and peer specialists (people who were partly or fully recovered from M.E.). The intervention programme involves home visits, audio recordings and being linked into a therapeutic group of people where people with severe ME can feel supported and understood. The feasibility study will comprise 20 patients fulfilling the CDC 1994 criteria (with information on those who also fulfil the Canadian Criteria) and will take place in Dorset and Oxford. It will be conducted over the next 2-3 years with the hope of having the results within 3-4 years, including feasibility and acceptability data, both quantitative and qualitative, from patients and their carers. The study design has been peer reviewed by the National School of Primary Care Research and follows the MRC Guidelines for evaluating complex interventions.

etc​

This is the NLP concepts study that is the subject of this thread:

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.

 

[Wildcat]

.

So why didn't Claire McDermott tell the APPG that the Feasibility study "intervention" is Neuro Linguistic Programming (NLP) ?


'Clare McDermott went on to describe innovative pilot work her team have recently completed, designed by people with M.E. for people with M.E. Results from this pilot work have been promising; the NIHR has consequently granted funding for a feasibility study which Clare will be conducting as part of a PhD. Clare shared the ‘Dorset Bespoke Group model for ME/CFS’ handout with the group.'

'She clarified that the intervention is neither CBT nor graded exercise therapy.'




.
Extract, Summary, APPG on ME meeting 13 March 2013:
http://www.meassociation.org.uk/wp-content/uploads/2013/04/APPG-minutes-13.03.13-final-approved.doc

[...]

2.2 Speaker: Clare McDermott, University of Southampton

'Clare McDermott has been previously involved in studies researching the biomedical side of the illness. She noted there is increasing research evidence that mind-body interaction can put biological systems within the body into an optimum healing state. Such a state can trigger positive physiological changes in a range of bodily systems including the hypothalamic pituitary axis (including the adrenal system), circulatory system and immune system. Having M.E. is very stressful in itself. So the big challenge is how to help the body get into the ‘mending state’ and how to develop strategies in order to equip people to do this as far as possible.'

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What "research evidence that mind-body interaction can put biological systems within the body into an optimum healing state?" ?


The phrases "optimum healing state" and " the mending state" basically paraphrase NLP enthusiast Alex Howard's sales patter (Optimum Health Clinic).

.
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http://www.spcr.nihr.ac.uk/news/newsletter-issue-2-5.pdf

Page 7

Developing a new intervention for patients with severe Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis

Clare McDermott, Sarah Frossell, University of Southampton

Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) can
result in patients becoming housebound, wheelchair or bedbound. There is
currently little evidence based treatment available for this severely disabled
patient group.

We set out to answer the question ‘How can the experiences of patients who
have recovered or substantially improved from CFS/ME be used as a resource
to help current CFS/ME patients?’

A series of development groups met in half day workshops with the goal of
understanding and modelling the key elements and skills required for recovery
from CFS/ME, drawing on the lived experience of patients.

Group sessions were facilitated using the conceptual model of ‘modelling
success’ from neuro-linguistic programming. Within the groups, all members
acted as equal peers, contributing individual insights and experience to
the process. Group members identified key recovery skills, and how best to
communicate these in ways which are meaningful to those with CFS/ME.
Barriers to effective communication were identified and creative ways of
addressing these issues were discussed.

Insights generated by this development group have been used to devise and
refine a community based intervention for patients with severe CFS/ME. This
intervention is the subject of an NIHR funded feasibility study which is currently
recruiting patients in Dorset and Oxford.

 

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http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=14727

Welcome to the UK Clinical Research Network Study Portfolio
NB: The information displayed below does not replace the protocol. The latest protocol version should always be consulted before making clinical decisions.

Community Based Intervention for Severe CFS/ME

Feasibility Study for a Community Based Intervention for Individuals with Severe CFS/ME

ISRCTN
EudraCT
MREC N°
UKCRN ID 14727
WHO ID


Specialty
Neurological
Portfolio Eligibility
Automatically eligible

Research Summary
Chronic Fatigue Syndrome/ME is an illness characterised by debilitating pain and fatigue which is estimated to affect up to 250,000 people in the UK. The aetiology is unknown. At its most severe, CFS/ME can lead to individuals becoming housebound, wheelchair and bedbound, and dependent on carers for all activities of daily living. The illness can last for decades, leaving many severely affected individuals profoundly disabled and socially isolated. It is estimated that up to 25% of patients with CFS/ME are severely affected. Whilst significant progress has been made in researching and treating CFS/ME in mild to moderately affected individuals, housebound patients are generally too ill to travel to out-patient appointments for treatment or research. There are currently few in-patient beds in the UK for this patient group. In consequence, there is a serious gap both in research evidence and effective help for these individuals; as highlighted by successive national reports on CFS/ME. This feasibility study will pilot an innovative, multi-disciplinary approach which has been developed through 2 years of collaborative work in Dorset between specialist health professionals, patients with experience of recovery, researchers and patient support groups drawing on the concept of 'Modelling Success', taken from Neuro-Linguistic Programming (NLP). In this process, insights from individuals with experience of recovery have been combined with expertise from specialist health professionals to: • identify recovery skills. • develop innovative ways of communicating these skills with patients who may have cognitive difficulties making it difficult for them to read, use a computer or engage in conversation. This study will: • pilot a community based intervention for 20 individuals severely affected by CFS/ME in Dorset, Oxford and Hampshire. • evaluate this intervention following the MRC guidance on best practice for evaluating complex interventions.

Study Type Interventional
Design Type Not specified
Disease(s) Nervous system disorders
Phase Pilot/Feasibility

Geographical Scope UK Multi-Centre
Lead Country England
Open to new sites No

Current Status Open
Closure Date 01/12/2016
Global Sample Size 27
Global Recruitment to Date | 29%

Main Inclusion Criteria
1. Chronic Fatigue Syndrome/ME according to CDC 1994 diagnostic criteria.
2. Categorisation of illness severity as 'severe' or 'very severe' according to the Cox-Findley severity categories, using the screening tool designed by Cox 2012. Note – both categories are merged and defined as 'severe' by NICE 2007 Guideliness.
3. Able to comprehend English to a sufficient level to fully understand study information (e.g. Patient Information Sheet) in order to be able to give informed written consent.
4. Able to provide informed consent either through signing consent form, or for patients whose physical disability makes full signature difficult, by making written mark witnessed by independent witness.

Main Exclusion Criteria

1. Major psychiatric co-morbidity (note: CDC 1994 criteria require that major psychiatric co-morbidities are excluded before a diagnosis of CFS/ME is given. In this study, all patients applying for the study will be screened by a specialist CFS/ME physician prior to entry to study).

2. Other major known physical co-morbidities, including diagnoses of cancer, heart disease, autoimmune disorders, AIDS. As above, patients will be screened prior to entry to exclude co-morbidities.


Chief Investigator(s)
Dr Selwyn Richards
Further details, please contact
Ms Clare McDermott

Poole Hospital NHS Foundation Trust
Longfleet road

Tel: 079 419 63137
crm20@soton.ac.uk
Funder(s) NIHR - School for Primary Care Research
Sponsor(s) University of Southampton

 

[Esther12]

A lot of info to go through here. Thanks.

 

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Clare McDermott is Research Co-ordinator for the Dorset Research & Development Support Unit.

http://www.emotionalprocessing.org/About us/About us.html

http://www.emotionalprocessing.org/...Physical Health/chronic fatigue syndrome.html

 

[Dx Revision Watch]

A lot of info to go through here. Thanks.

Esther12, you might have seen some of it already in the thread:

http://forums.phoenixrising.me/inde...llaborative-uk-cmrc-tymes-trust.32302/page-16

but maybe not the APPG on ME March 13 meeting extract or the UKCRN ID 14727 study details.

 

[Esther12]

Thanks Suzy. There's just so much stuff I want to keep up on that I'm sure I end up forgetting nearly as much as I take in. I think I'm trying to be a bit more focussed with things going forward.

 

[Dx Revision Watch]

Thanks Suzy. There's just so much stuff I want to keep up on that I'm sure I end up forgetting nearly as much as I take in. I think I'm trying to be a bit more focussed with things going forward.

I have a particular interest in these Southampton studies (especially the McDermott et al What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise and the NLP based concepts study Feasibility Study for a Community Based Intervention for Individuals with Severe CFS/ME because of the close links between Southampton researchers and Dorset CFS service provision.

Selwyn Richards is CFS lead for Dorset; Michelle Selby is Head OT/Network Co-ordinator and contact for CFS/ME Services, Wareham Hospital; Clare McDermott is Research Co-ordinator for Dorset Research & Development Support Unit.

The Wareham Hospital CFS Service was also used as one of the models for the 2007 nationwide CFS service roll out. I think I am right in saying that the Wareham CFS Service (CBT delivered by OTs in a group setting) has also been used in studies at U of Bournemouth as a model for service provision for patients with Multiple Sclerosis (MS).

Edited to add: Michelle Selby was also involved in the setting up of a Southampton CFS service.

Dorset CFS service:

http://www.dorsetmesupport.org.uk/nhs-cfsme-services-in-dorset/

 

[Dx Revision Watch]

.

So why didn't Claire McDermott tell the APPG that the Feasibility study "intervention" is Neuro Linguistic Programming (NLP) ?

[...]

What "research evidence that mind-body interaction can put biological systems within the body into an optimum healing state?" ?

The phrases "optimum healing state" and " the mending state" basically paraphrase NLP enthusiast Alex Howard's sales patter (Optimum Health Clinic).

Bishop, Felicity L, Fiona Barlow, Jan Walker, Clare McDermott & George T Lewith. 2010.

The Development and Validation of an Outcome Measure for Spiritual Healing: A Mixed Methods
Study. Psychotherapy and Psychosomatics 79(6). 350-362.
doi:10.1159/000320120.

Using focus groups and cognitive interviews, the authors developed a non-burdensome measure that captures the
experience of individuals receiving healing (healees). It includes 5 subscales: outlook, energy, health, relationships
and emotional balance. These subscales demonstrated acceptable internal consistency, convergent validity and test-retest reliability. Three of the subscales and the whole questionnaire demonstrated good sensitivity to change.

 

[A.B.]

She emphasised that the programme regards M.E. as a biomedical illness and works with the individual on how to use strategies to put the body into a healing state. She clarified that the intervention is neither CBT nor graded exercise therapy.

Clare McDermott has been previously involved in studies researching the biomedical side of the illness. She noted there is increasing research evidence that mind-body interaction can put biological systems within the body into an optimum healing state. Such a state can trigger positive physiological changes in a range of bodily systems including the hypothalamic pituitary axis (including the adrenal system), circulatory system and immune system. Having M.E. is very stressful in itself. So the big challenge is how to help the body get into the ‘mending state’ and how to develop strategies in order to equip people to do this as far as possible.

You know the intervention is garbage when they talk about mind-body interaction and stress.

This is hardcore psychobabble wearing a biomedical disguise.

How to spot psychobabble:

- Pervasive vagueness throughout the text.
- Claims to treat physical symptoms via interventions targeting the mind.
- The therapy is a secret.
- The text reads like promotional material and is written to build up expectations and hope.
- Stress is described as key problem.
- The text reassures patients that their symptoms are very real and will be taken seriously.
- The text is sprinkled with biomedical terms from endocrinology and neurology.

 

[Scarecrow]

What "research evidence that mind-body interaction can put biological systems within the body into an optimum healing state?" ?

The phrases "optimum healing state" and " the mending state" basically paraphrase NLP enthusiast Alex Howard's sales patter (Optimum Health Clinic).

I thought of Alex Howard, too. Another one who has 'seen the light' and wants to enlighten the rest of us. Waffle, waffle, waffle.

 

[Min]

Another complete waste of UK taxpayers' money. We have had 30 years of this complete bollards instead of biomedical research.

Garbage in, garbage out

 

[Min]

These are speakers at Action for ME's forthcoming symposium on severe M.E.!

How on earth is having yet more psychobabble pushed at us going to help us? We've had 30 years of it in the U.K and hey! AfME - we still have our neurological illness.

 

[Kati]

Is that supposed to help our arcuate fasciculus and grey matter, I wonder?

I agree on witch medicine.

 

[WillowJ]

one would think they could find something more sensible to do with the funds.

 

[CantThink]

We've had 30 years of it in the U.K and hey! AfME - we still have our neurological illness.

LOL! @Min that made me laugh. As sad as the situation is... That's so true and they (AfME) seem so blind to it.

The whole approach of getting the mind into the correct state for healing/mending reminds me of treating someone with a burnout who has overstressed themselves... Plus the onus is once again on the patient to engender their own magical healing via the correct state of mind and aligning the mind with the body so that the body can heal.

Strange that we are the (only?) group with a neurological disease that are preventing our own healing by staying entrapped in a non-mending mindset.

Sad to me is that Care McDermott was a severe M.E. sufferer herself. I find it baffling.

 

[Min]

http://www.emotionalprocessing.org/...Physical Health/chronic fatigue syndrome.html
here is Ms McDermott discussing her recovery by emotional processing

 

[Esther12]

http://www.emotionalprocessing.org/Physical health/EP & Physical Health/chronic fatigue syndrome.html
here is Ms McDermott discussing her recovery by emotional processing

Can anyone see the references for that?