United Kingdom: Vitality360, a private company treating ME, fatigue and pain

Sly Saint · May 20, 2023

event
Living with ME and Chronic Fatigue Syndrome Sept 22

About this event
Chronic Fatigue conditions are some of the most frustrating and life-altering conditions to suffer from, so why are they still so poorly understood?
ME/CFS affects an estimated 250,000 people in the UK, roughly 3 in every 1,000 people.

But as of 2022, medical science still cannot explain why some people get chronic fatigue syndromes and there is very little effective treatment.

Join consultant rheumatologist, Dr Gerald Coakley, and occupational therapist, Beverly Knops for a much-needed, go-to, evidence-based guide for people struggling with ME/CFS, or their friends and family, providing information and advice about the nature of the condition, how it progresses, and what they can do to improve their health.

Dr Gerald Coakley has worked in the NHS for over 30 years. He has been a Consultant Physician and Rheumatologist in South London since 2000 and was a Director of Medical Education for 10 years. Since 2001, he has been involved in the care of people with ME/CFS, and runs a weekly private Fatigue Clinic at Keats House and at The Harley Street Clinic.

Beverly Knops DipCOT, MRCOT, MBACME is a Specialist Occupational Therapist with more than thirty years' experience. She has spent the majority of her career working with people experiencing persistent pain and fatigue. In 2012, Beverly started work as an associate therapist with Vitality360, a private company working exclusively with people experiencing pain and fatigue. She now leads this specialist team full-time.
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'evidence-based guide' ?
https://www.eventbrite.co.uk/e/livi...ome-tickets-400805137957?aff=ebdsoporgprofile

CRG · Sep 3, 2022

How to "not represent ME/CFS"

Trish · Sep 3, 2022

It looks like they have a new book coming out:
Living with ME and Chronic Fatigue Syndrome (Penguin Life Expert Series, 6) Paperback – 22 Sept. 2022
by Dr Gerald Coakley (Author), Beverly Knops (Author)
Part of: Penguin Life Expert (6 books)

Here's the product info from Amazon:

Chronic fatigue conditions are some of the most frustrating, life-altering and stigmatized illnesses, so why are they still so poorly understood?

ME/CFS affects roughly 17 million people worldwide. Medicalscience still cannot explain why some people get chronic fatigue syndromes and, distressingly, there are few effective treatments. While many people with ME/CFS are able to live a fairly normal life, a significant minority have symptoms so severe that they are confined to their house, or even their bed, and suicide rates are well above the national average.

Living with ME and Chronic Fatigue Syndrome, by consultant rheumatologist Dr Gerald Coakley and occupational therapist Beverly Knops, is a much-needed, evidence-based guide for people struggling with ME/CFS - as well as their friends and family - that provides practical information and accessible advice on how to manage and live with this challenging condition, at all stages of severity. It will explore:

- The causes and management options for ME/CFS
- The impact of the condition on work, education and emotional wellbeing
- The importance of a balanced, nutritious diet in managing your symptoms
- Post-Viral Fatigue Syndrome (PVFS) and other fatigue-related syndromes
- Advice for carers and questions to ask your doctor
- Life after ME/CFS

This essential, concise book, and its empowering patient stories of hope, will equip readers with the knowledge, strategies and support to navigate and manage this challenging condition.

Sean · Sep 4, 2022

This essential, concise book, and its empowering patient stories of hope, will equip readers with the knowledge, strategies and support to navigate and manage this challenging condition.
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Based on very low-low quality evidence.

Marketing, par excellence.

Peter Trewhitt · Sep 4, 2022

Trish said: ↑

This essential, concise book, and its empowering patient stories of hope, will equip readers with the knowledge, strategies and support to navigate and manage this challenging condition.
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The challenge of this condition is nothing to do with inherent aspects of ME/CFS and all to do with our currently limited understand of it or indeed high levels of medical misinformation.

Not having read the book, it may be that what follows is unfair on the authors, but … … …

Given current figures indicate that only 6% of suffers will recover and we do not know if any improvement experience by the remaining 94% is connected in any way with medical intervention or would happen regardless. We have no evidenced based treatments, and given a significant, but inadequately quantified, proportion will show no improvement or experience episodes of deterioration or ongoing worsening any book peddling stories of hope is setting up the majority of patients for failure and disappointment. We see such testimonies of success in snake oil salesmen and quack cures, such as the Lightening Process, and they are often associated at best with unintentional gaslighting at worst victim blaming when they (the cures) fail.

The best any intervention can currently do is help patients live with their condition and try to avoid any worsening of their condition through mismanagement, over exertion or inappropriate exercise. Any book purporting to offer other than this is adding to patients’ problems, not offering any solution.

Sly Saint · Sep 4, 2022

Beverly Knops is a BACME board member

Specialist Occupational Therapist DipCOT, MRCOT,
MBACME. Vitality 360.
Beverly has been qualified for over 30 years and has vast experience
in pain and fatigue management and in training others.
She works part time within the North Bristol NHS Trust, working in both pain
management and fatigue management clinics.
Alongside this shemanages Vitality360, a rehabilitation company also specialising in Pain and Fatigue. She is particularly interested in supporting people in
retaining and returning to work where this is a realistic goal. Beverly
has been an integral BACME board member for many years and her
contribution to the organisation is extensive.
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https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-11#post-432004

bobbler · Sep 4, 2022

"Life after ME/CFS"

Really? I just can't help thinking when will these people stop and give us a chance of a life or hope of not having bigoted nonsense thrown at us daily.

Sounds like they are trying to market the condition as 'lifestyle'. And to pretend it is curable or whatever they've kidded themselves is 'recovery' (and sufficient in their mind as a life for someone else) with no care for long term follow-up is just unconscionable. There is a question of responsibility and accountability needing to be required in clear terms because too many seem to miss these basics.

Wits_End · Sep 9, 2022

Oh, you have found it. I just found a separate reference to the online event and wondered if it was worth mentioning. Hmm.

Dolphin · May 20, 2023

Merged thread

Vitality 360 Conference on Fatigue (June 15, 2023)

Vitality 360 Conference, Thursday 15th June 2023, 09:30-16:00
https://www.vitality360.co.uk/fatigue2023
https://www.vitality360.co.uk/fatigue2023-schedule
https://www.vitality360.co.uk/fatigue-event-speakers

Dolphin · May 20, 2023

As I recall, this is a company people trying to make disability insurance claims disability insurance companies often send patients to.

—-
https://www.vitality360.co.uk/our-team
Jessica Bavinton
Founder Director and Senior Specialist Physiotherapist

BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME

Jessica is the Founder Director of Vitality360. Her vision was to create a range of personalised therapeutic services that provide extraordinary results and unexpected vitality; delivered by a happy team of expert Clinicians committed to making a profound difference to people’s lives.

As a specialist Physiotherapist, she has been involved in several national services and research projects, committees and teaching programmes in the fatigue and pain rehabilitation field for 14 years. She has worked extensively in the NHS and in private settings. Vitality to her means a love of life, a confidence in one’s ability to manage health and the changes life brings; a hopeful future, and an alignment with what’s important to each individual.
—-
She co-wrote the Graded Exercise Therapy manual used in the PACE Trial.

Thread discussing the book here

Trish · May 19, 2023

Here's what it says about some of the speakers and my comments:
https://www.vitality360.co.uk/fatigue-event-speakers

Dr Gerald Coakley - Consultant Rheumatologist & Physician

Dr Gerald Coakley has worked in the NHS for over 30 years. After training in London and Nottingham, he won an Arthritis Research Campaign Fellowship, allowing him to conduct research in the immunogenetics of Felty’s syndrome at Guy’s Hospital. In the NHS, he treats a wide variety of autoimmune and inflammatory conditions, such as rheumatoid arthritis, lupus and vasculitis. He was Chair of the Education and Training Committee at the British Society for Rheumatology from 2019-2022. Since 2001 he has treated people with ME/CFS and runs a private fatigue clinic at London Bridge and at the Harley Street Clinic.
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So ME/CFS is not his specialist area, nor is fatigue, but rather a money spinner private clinic sideline. He was co-author of a dreadful book published in 2022 on ME/CFS that claims GET should be still available as it helps some people, only gives patients stories with a positive spin, claims all therapy is helpful, and is horrible about patients who don't share his views. Here's our thread on the book:
https://www.s4me.info/threads/livin...-sept-2022-bps-views.29552/page-4#post-438974
Note from the conference program in my next post, Coakley seems to be their main speaker, since his talk is the first individual presentation and the only one that is not a choice of two. He's also the only doctor speaking at the conference, so presumably given higher status on that basis, rather than that he has a clue what he's talking about. Call me a cynic!

Fiona Mckechnie - Occupational Therapist and mindfulness based Therapist and Coach

Fiona has worked in fatigue services for 25 years and currently works for Bristol ME service as a senior clinician and mindfulness lead and as an associate with Vitality360. She has an MSc from the centre for mindfulness research practice and has investigated the use of mindfulness in ME/CFS services. Fiona has also qualified as coach, yoga teacher and EMDR therapist. She has developed a mindfulness programme within the Bristol ME/CFS service which is being published as a book in autumn 2023 and is particularly interested in pragmatic approaches that support individuals goals, for example the workplace. Fiona is currently developing online mindfulness courses and training for people with fatiguing conditions who cannot access them via local services.
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So the Bristol clinic continues to provide unevidenced Mindfulness for ME/CFS.

Charlie Adler - Specialist Occupational Therapist

Charlie has worked in the field of pain and fatigue with Vitality360 for a number of years. She spent 18 years working in the NHS ME/CFS service in Dorset with training and experience first gained in Romford, Essex initially. Charlie is a qualified coach and is on the board of trustees for BACME (British Association of Clinicians in ME/CFS). She is passionate about helping people to find the resources that help them to help themselves.
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I don't know what being a 'qualified coach' refers to. Coaching what? Football, LP, hang gliding?...

Dr Pete Gladwell - Clinical Specialist Physiotherapist

Pete is a Clinical Specialist Physiotherapist and Service lead in the Bristol M.E. Service. Pete has collaborated extensively with Action for ME on their Pacing Guide, and has co-authored a report on the Action for ME 2010 rehabilitation survey. Pete’s PhD investigated the use of TENS devices by people with chronic musculoskeletal pain. He supports undergraduate physiotherapy education about ME/CFS, and is also involved in the delivery of the Masters level fatigue course at the University of the West of England. Pete co-delivers the Physiotherapy Pain Association “Pain and Sleep” course.
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We have come across Pete Gladwell in a lot of ME/CFS contexts including the AfME pacing guide that many of us are critical of.
He's also on the IAG for the stalled new Exercise for CFS Cochrane review as one of their 2 clinicians.
https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-50#post-347578
Currently also part of the team researching PROMS for ME/CFS.
https://www.s4me.info/threads/evalu...living-with-me-cfs-2023-jones-gladwell.33239/

There are many more speakers, mostly focused on the workplace and occupational health with all sorts of long term conditions. Also rehab from various conditions that involve fatigue, and other specialisms such has nutrition. There is one person speaking about her lived experience with fatigue.

Trish · May 19, 2023

Note that it's not an ME/CFS conference and there is no mention of ME/CFS anywhere in the program.

Date: Thursday 15th June 2023 Time: 09:30 -16:00 Tickets: From £50

Persistent fatigue, whatever the cause can have a significant impact on people’s work, relationships and lifestyle.

Our conference will offer varied expert perspectives on fatigue and discuss what interventions can be effective.

Relevant to clinicians, employers, occupational health providers, claims assessors in the income protection market and people with a fatigue condition themselves.
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https://www.vitality360.co.uk/fatigue2023

Schedule
https://www.vitality360.co.uk/fatigue2023-schedule

09:30
Welcome and housekeeping

09:40
Alex Westcombe, Pete Gladwell & Charlotte Bray - “Setting the scene: experiences of fatigue”

10:10
5 minute break

10:15
Gerald Coakley - Consultant Rheumatologist & Physician - "The Challenge of Fatigue – The Physician’s Perspective"

10:55
15 minute break

11:10
Dr Wendy Molefi - Menopause Specialist

"Fatigue and Menopause"

or

Mandy Whalley - Independent Occupational Therapist in Occupational Health

"Fatigue within Neurodiversity"

11:50
5 minute break

11:55
Helen Brunger - Health Psychologist

"Post concussion fatigue"

or

Thomas Cave - Clinical Academic Lecturer and Adult Therapies Pathway Lead – Oncology and Haematology

"Post cancer fatigue"

12:35
45 minute break

13:20
Sue Luscombe RD MBDA - Nutrition and Diet Consultant

"Nutrition, Diet and Fatigue"

or

Maxine Haylock - Specialist Occupational Therapist

Charlie Adler - Specialist Occupational Therapist

"Fatigue management is more than just pacing"

14:00
5 minute break

14:05
Amanda Mason - Career and Employment Consultant

"Working with Fatigue"

or

Fiona Mckechnie - Occupational Therapist and mindfulness based Therapist and Coach

"Tired and wired” The role of rest in fatigue management"

14:45
15 minute break

15:00
Emma Taylor - Independent Occupational Therapist

"Cognitive Ergonomics. Let’s just make life simpler"

or

Ros

"My road to recovery, a personal story from an expert by experience"

15:40
Discussion facilitated by Alex Westcombe - Reflections and Close

16:15
End

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United Kingdom: Vitality360, a private company treating ME, fatigue and pain

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United Kingdom: Vitality360, a private company treating ME, fatigue and pain

Sly Saint Senior Member (Voting Rights)

CRG Senior Member (Voting Rights)

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Sean Moderator Staff Member

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Sly Saint Senior Member (Voting Rights)

bobbler Senior Member (Voting Rights)

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