event Living with ME and Chronic Fatigue Syndrome Sept 22 'evidence-based guide' ? https://www.eventbrite.co.uk/e/livi...ome-tickets-400805137957?aff=ebdsoporgprofile
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.
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.
Beverly Knops is a BACME board member https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-11#post-432004
"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.
Oh, you have found it. I just found a separate reference to the online event and wondered if it was worth mentioning. Hmm.
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
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
Here's what it says about some of the speakers and my comments: https://www.vitality360.co.uk/fatigue-event-speakers 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! So the Bristol clinic continues to provide unevidenced Mindfulness for ME/CFS. I don't know what being a 'qualified coach' refers to. Coaching what? Football, LP, hang gliding?... 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.
Note that it's not an ME/CFS conference and there is no mention of ME/CFS anywhere in the program. 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
