Patrons, Trustees, Advisers, Staff
Patrons
HRH The Duke of Kent KG GCMG KCVO
Patron
Countess of Mar
Patron
Margaret became ill with ME/CFS in 1989 after coming into contact with sheep dip on her farm. She was an elected hereditary peer and a crossbench member of the House of Lords where she held a number of distinguished positions, including Deputy Speaker and Deputy Chair of Committees. She became Deputy Chair of the All-Party Parliamentary Group on ME (APPG), established and chaired Forward-ME and has had a distinguished career advocating for ME/CFS. Her passionate and effective campaigning won widespread support from the patient community. She became a patron of the charity in 2015 and retired from public service in 2021.
Etain, Lady Hagart-Alexander
Patron
John Rutter
Patron
John is a distinguished English composer and conductor associated mainly with choral music. He developed ME/CFS after contracting Chicken Pox from his son and was badly affected for many years. ‘Gloria’, ‘Requiem’, ‘Magnificat’, ‘Mass of the Children’, ‘The Gift of Life’, and ‘Visions’, are widely performed around the world, and many of his shorter pieces such as ‘The Lord bless you and keep you’, ‘For the beauty of the earth’, ‘Look at the world’, and ‘All things bright and beautiful’ have become ‘standards’. He was appointed patron of the charity in 2014.
Board of Trustees
Neil Riley
Chairman
Neil was a lawyer with a large company before becoming ill with ME/CFS and taking early-retirement.
- He became Chairman in 2004 and is involved with the charity on a daily basis.
- Neil has been integral in making the charity financially stable and ensuring it is able to meet its primary objectives: supporting, informing, and investing in medical research.
Dr Charles Shepherd
Trustee
Charles worked in a variety of hospital posts, from general surgery to infectious diseases. He wanted to become a GP, but ME/CFS intervened after he caught Chicken Pox from a patient.
- He became a Trustee and Honorary Medical Adviser more than 20 years ago and contributes to the charity’s efforts on a daily basis.
- Charles coordinates the Ramsay Research Fund, writes much of the charity’s medical literature, comments on social media, regularly contributes to the charity’s magazines, attends conferences and external meetings, and provides interviews and expert comment to the press.
- He is an acknowledged expert on Post-Viral Fatigue Syndromes, ME/CFS, and Long Covid, and is a highly respected champion of the patient community.
Martine Ainsworth-Wells
Trustee
Martine began her career in radio, then moved into press, then tourism/destination marketing and promotion.
- Her career was interrupted by ME/CFS, but she has improved and is now able to run her own business.
- She has a sterling reputation and wealth of experience in PR and marketing.
Martine is also the charity’s Campaigns Director and works with Team Creative and external agencies to plan and implement initiatives that aim to drive the charity forward in more focused and effective ways to reach more people and better serve the community.
Ewan Dale
Trustee
Ewan has had ME/CFS since 1989 after contracting a ‘flu-like’ illness that meant he had to give up his career.
- He joined the charity as a Trustee in 2004 having been involved in local advocacy efforts.
- Based in Glasgow, Ewan remains involved in local and national efforts to establish equitable healthcare for people with ME/CFS and is the charity’s Scotland representative.
David Allen
Deputy Chairman
- David has spent all his career working in Computing and Information Technology. He founded his own business in 1995 to provide IT services and support to Small and Medium Sized Enterprises (SMEs).
- In 2002 he was asked to take over and run IT services for the ME Association. In 2012 he became an Associate Trustee and in January 2023 he was appointed a Full Trustee and Deputy Chairman.
He is involved on an almost daily basis and is chairman of the Audit, Investment, and Risk Committee, advising and assisting on the financial and smooth running of the charity.
Mike Mitchell
Trustee
Mike Mitchell has had two careers. He first served as an officer and Captain (briefly) on British merchant ships for close to 13 years. He left the sea to study law and then qualified as a solicitor.
- His practice was in maritime law specialising in disputes arising from ship casualties – collisions, groundings, oil pollution, and salvage.
- Mike retired from partnership in 2017 and has been working until recently as a consultant.
- He is a parish councillor.
- He enjoys a variety of pastimes, including sailing, the practise of celestial navigation, golf and reading; and, although less so, gardening.
Nicki Strong
Associate Trustee
- Nicki is a mother of two adults with ME/CFS and knows how devastating this illness can be. In her family’s experience, psychological and behavioural approaches for ME/CFS are at worst harmful and at best supportive – but do not improve the underlying disease which causes disability and suffering.
- As an associate trustee, mother and campaigner, she is passionate about achieving the charity’s goal of discovering effective treatments and one day even a cure.
- Nicki believes in working collaboratively with those who share the charity’s aims to raise awareness and understanding among the medical profession and the general public – and she feels hopeful about the progress that has been made in recent years.
Specialist Advisers
David Walton
Hon. Employment Adviser
- David leads Primas Law’s employment team and has over 20 years’ experience as a specialist employment law solicitor.
- He has been a source of advice and support to ME Connect for 7 years, and in the last 2 years ago he became the charity’s honorary employment adviser.
- David has a close family member who has had to contend with ME/CFS for the last 15 years; it is a cause that is very close to home.
- He provides expert advice to people with the condition following a referral from ME Connect and offers a 30-minute initial consultation for free.
- David also contributes to the literature produced by the charity and to ME Essential when his other work allows.
Dr Lisa Dvorjetz
Emotional Health & Wellbeing Adviser
- Lisa is an accredited counselling psychologist with both the British Psychological Society and the Health and Care Professions Council.
- She is currently working in the NHS and in private practice with people who have long-term health conditions.
- As well as contributing to the charity’s mental health literature, Lisa has been volunteering as an ME Connect helpline supervisor since 2013.
Nigel Speight
Hon. Paediatric Medical Adviser
- Nigel has long advocated for children and young people with ME/CFS and often helps them when faced in inequalities of health and social care or with education provision.
- He was an expert witness for the NICE Guideline committee and contributed to the 2021 NICE Guideline on ME/CFS.
- Nigel is an acknowledged medical expert on Post-Viral Fatigue Syndrome and ME/CFS and a recognised community champion.
Richard Cantillon
Hon. Dental Adviser
Hon. Dental Adviser
- Richard qualified as a dentist in December 1980, and it was all he’d ever wanted to do since the age of 9. You could say that he’d ‘lived the dream’.
- He worked in Southport for 6 years before moving to his present practice on the Cheshire/Derbyshire border over 36 years ago which he has owned and managed for most of that time.
- He has always felt that it was more important for anyone with ongoing health vulnerabilities to avoid dental diseases, which in the main, are preventable.
- The other problem is accessing treatment, which of course involves finding an interested, sympathetic dentist to help. Richard still believes that most of his colleagues are in this category, although his profession has become much more difficult during his time as a dentist.
- The main reason he accepted this role was that he was asked very nicely, by a lovely woman with ME, who works for the charity and is his patient. It has not been an arduous appointment, but he’s helped many members over the years.
Sue Luscombe
Diet & Nutrition Adviser
- Sue is a Registered Dietitian, who has a wealth of experience improving people’s health and treating illness through diet changes. Her NHS career has spanned over 44 years.
- She has been especially interested in ME/CFS after her daughter, Becki, was diagnosed in 2002, at the age of 12. For many years, the family lived with the debilitating fatigue and practical consequences of ME/CFS.
- She has been in demand as a speaker, and workshop leader, including conferences for NHS Medical and Health Professionals at Birmingham NEC (2014) and CFS Research conference (CMRC), Bristol 2018.
- For many years, she was the Dietetic representative on the executive council for the British Association of CFS/ME (BACME). She is the ME Association’s Honorary Dietetic Advisor and regarded as a leading authority on diet and ME/CFS, and Long Covid.
- Sue works with those recovering from Long Covid and has written the British Dietetic Association’s ‘Food facts: Diet and Long Covid’, in addition to contributing to ‘Food facts: Diet and ME/CFS’.
- Sue’s daughter, Becki, died in 2014, following severe mental health issues, and she dedicates her work to Becki’s legacy.
Dr Charles Shepherd
Hon. Medical Adviser
Charles worked in a variety of hospital posts, from general surgery to infectious diseases. He wanted to become a GP, but ME/CFS intervened after he caught Chicken Pox from a patient.
- He became a Trustee and Honorary Medical Adviser more than 20 years ago and contributes to the charity’s efforts on a daily basis.
- Charles coordinates the Ramsay Research Fund, writes much of the charity’s medical literature, comments on social media, regularly contributes to the charity’s magazines, attends conferences and external meetings, and provides interviews and expert comment to the press.
- He is an acknowledged expert on Post-Viral Fatigue Syndromes, ME/CFS, and Long Covid, and is a highly respected champion of the patient community.
Ella Smith
Welfare Rights Adviser
- Ella lives in the Lake District with her daughter and rescue dog Bracken. In her former life she was a very fit and active person, but ME/CFS changed her life completely and she has had to change her expectations to match.
- She has been an independent welfare rights adviser since 2006 and joined the ME Association in July 2021.
- Ella aims to make understanding of the benefits process easier and to give people with ME/CFS (and Long Covid) the tools they need to get the help they deserve.
Communications Team
Emma Jefferies
Communications and Social Media Lead
- In Emma’s early career, she was a qualified staff nurse, however, this career ended due to chronic widespread pain and debilitating fatigue, which was diagnosed as Fibromyalgia. After which, she was later diagnosed with ME/CFS.
- She is the founder of Andover Fibromyalgia & ME Community Group (AFMCG) and has always been active on her AFMCG social media and supported people with ME/CFS and Fibromyalgia in many online health communities.
- Emma joined the ME Association in March 2021 as Social Media Specialist and has taken on the role of overseeing all communications and social media content.
Rachel
Communications Officer
- Rachel is an experienced graphics and web designer and has worked in many different industries, bringing visual media to life. She is an accessibility design specialist.
- Rachel is a valued support to people with ME/CFS and Fibromyalgia with a lot of personal experience with these conditions and the varying symptoms.
- She has joined the ME Association in 2024 in the Communications team, working in website and social media.
Kelly
Communications Officer
- Kelly joined the MEA Communications team in 2024, working on social media and the MEA website.
- She has a background in Digital Marketing and has worked with both businesses and social enterprises to develop and maintain their websites and social media.
- Having lived with ME for many years, Kelly has a huge amount of empathy for others living with chronic illness and is excited to be working with the ME Association to support them in the essential work they do to help people living with ME/CFS and Long Covid.
Caroline Cavey
Magazine Editor and Literature Designer
- Caroline is a freelance designer and spends a lot of her time working with the ME Association. She is designer and editor of both ME Essential and ME Medical magazines and the charity’s medical literature.
- She regards working for the ME Association to be a privilege. Her focus is on ensuring the magazines and literature provide accessible support and reliable information and help the healthcare profession better understand Post-Viral Fatigue Syndrome, ME/CFS and Long Covid.
- Caroline went to art college in Cornwall and qualified as a graphic designer. Since then, she has been very lucky to work in an industry she adores, working on design for branding, print, advertising, magazines and websites. She also used to run her own lifestyle magazine.
- She loves theatre and ballet, holidays whenever she can, and spending time with family and friends. She has 3 children who are all artists and designers, a gorgeous grandson, and lives a very happy home life with her husband Barry.
Dr Katrina Pears
Research Correspondent
- Katrina has had ME/CFS in her life since 2009, when her younger brother was stricken by the illness. At the time she knew very little about it, until in 2013 she was hit by a nasty bout of Flu from which she never fully recovered.
- She lived a very active physical lifestyle pre-ME/CFS, with daily activities of cycling, gym workouts or climbing, which have all had to take a back seat.
- When her ME/CFS began, Katrina was 6 months into a PhD in Organic Geochemistry at the University of Bristol. It took a lot of family teamwork, perseverance and stubbornness to finally complete her studies 6 years later.
- She lives with her husband, and they had their first child in 2021, which has brought another huge change in lifestyle and joy (and continuously sleepless nights).
- With ME/CFS her interests changed, and she has thrown herself into charitable work with organisations like Barnardo’s, Action for M.E., and most recently, the ME Association, where she aims to explain important but often complex science to the patient community.
- Katrina became the charity’s Research Correspondent in 2021 and produces the weekly research update, research reviews, conference reports, and other related content.
Project Development Team
Russell Fleming
Head of Project Development
- Russell had spent a very enjoyable 14-year career in investment and high finance. He worked for Lloyds Private Banking, in a variety of management roles, and was transferred to Jersey in the Channel Islands. In 1999 he took a holiday abroad and contracted a nasty and prolonged viral infection that led to ME/CFS.
- He joined the charity 10 years ago, first as a volunteer, working on several niche projects, before accepting a part-time position as the Website and Social Media Manager.As his illness stabilised and his functional abilities improved, Russell took a full-time position as Communications Manager in 2020 continuing to work from home.
- In 2022, he was charged with more responsibility to oversee all activities relating to; fundraising, public relations, the 2 magazines, the website and website shop, literature, research reporting, benefits reporting, public information and support requests, and social media.
- In 2024, Russell took on a new role as head of project development and looks forward to producing viable projects that will help the charity achieve its objectives and bring further support to the patient community.
- Russell lives in North Cornwall and is fortunate to have good support in place. He lives with Buster, a 3 year-old Labrador, and is enjoying greater freedoms now he is able to drive again.
Karren Winters-Cavalot
Head of Health and Social Care
- Karren trained as a nurse at her local hospital as soon as she left school; having known for years this was the career she wanted to follow. She spent 5 years on a medical ward before transferring to emergency medicine as a Senior Sister. She later became the Operations Capacity Manager for two hospitals, overseeing patients from their admission to discharge.
- Arthritis and chronic back pain forced her to leave this role as it became too difficult to provide the care her patients needed, and she went to work at an IVF clinic as a Fertility Nurse Specialist. Over the next few years, she began teaching and took on the role of Learning Manager supervising a team of tutors and teaching assistants before she became ill in 2015 and her hectic life changed overnight.
- Unable to recover properly from her illness she was hospitalised and underwent a barrage of blood tests, x-rays, and scans. Three years later she was finally diagnosed with ME/CFS and orthostatic intolerance. Karren, her husband, and their two teenage boys eventually moved to Staffordshire to live in a quieter, more rural area, which she loves. When her health allows, she enjoys walking along the river with her family and their 2 dogs.
- Karren has since worked as a digital communications and social media specialist for Healthwatch Stafford and Leicestershire where she designed and managed websites and social media health campaigns.
- She joined the ME Association in April 2023 and is working from home where she plans to use her knowledge of medicine, healthcare, digital communication, and her lived experience of ME/CFS to support and help others in the community. Karren is very passionate about ensuring everyone with ME/CFS has easy access to good quality health and social care.
Charlotte Rawlinson
Project Officer
- Charlotte joined the ME Association in August 2024 as a Project Officer in the Health and Social Care team.
- She is a qualified pharmacist and has experience in community, hospital and general practice.
- Charlotte also has a longstanding interest in scientific research, and after gaining the Pharmaceutical Science Prize in the final year of her university studies, has since worked on collaborative review papers.
- In working for the ME Association, she hopes to use her personal and clinical experience to improve quality of care and access to services for people whose lives have been impacted by ME/CFS or Long Covid.
- Outside of her professional life, Charlotte loves to write acoustic music and spend quality time with family, friends and her dog, Honey.
Lucy
Project Officer
- With over 25 years of experience as a musculoskeletal physiotherapist, Lucy has dedicated her career to advocating for patients with chronic and persistent pain. She completed an MSc in Pain and went on to work within a specialist Pain Team at a London teaching hospital. For the past 15 years, she has been passionate about supporting individuals living with complex pain conditions, ensuring they receive the best possible care and attention.
- Lucy is excited to bring her expertise to the ME Association in a new capacity as Project Officer. Her goal is to advocate for those with ME and Long Covid, and their families, ensuring they receive the care and understanding they deserve. Lucy is committed to supporting healthcare professionals in staying informed and up to date about these conditions, helping to bridge the gap in knowledge and treatment to improve outcomes for patients.
- When she's not at work, Lucy enjoys dog walks, spending time with her husband and three children, and, when time allows, horse riding.
Fundraising
Jim Morrison
Fundraising and Development Manager
- Jim started began his career in fundraising 23 years ago with the British Red Cross. Since then he has worked for Shelter, Sue Ryder, Kidney Research UK and SSAFA, the Armed Forces Charity.
- He has fulfilled the roles of Area Fundraising Manager, Corporate Account Manager, Major Donor Manager and most recently the Head of Community Fundraising. During this time he has been responsible for raising millions of pounds through effective fundraising methods, managing large teams of volunteers and developing networks of supporters.
- He saw first-hand the effects of ME when a close member of his family was struck down and unable to function effectively in all aspects of her life. This meant losing her career and falling into social isolation. After years of endless tests, she was finally diagnosed with ME, thankfully she is now in recovery.
- Jim lives in North Cornwall, in a house that he built himself, with his wife, 3 boys and one daft collie. When not working Jim can be found helping out campers on an ecosite he runs or down at the beach surfing.
Tony Britton
Senior Fundraising Consultant
- Tony had a successful career in journalism, local government, and charity public relations, and joined the ME Association in 2001.
- He has enjoyed several roles at the charity, more recently working to help people who wish to support us.
- He has said that his current role is ‘definitely the last before retirement’ and we will be sorry to see him leave when he finally retires. Until then, he's remains very active.
- Please contact Tony if you want to raise funds or need support with any event: tony.britton@meassociation.org.uk, mob: 07393 805566.
Head Office Team
Vicky Smith
Head of Finance and Operations
- Vicky is a dedicated employee who works closely with her colleagues to develop her personal understanding of the physical and emotional impact of ME/CFS.
- She joined the charity in 2012 as a part-time contractor and has since become a full-time employee. For Vicky, working for the charity is deeply rewarding, especially seeing the wonderful support given to the those within the patient communities.
- As Head of Finance and Operations, Vicky is responsible for ensuring that all statutory and company deadlines are met and for the management and operation of head office where she is based. She works closely with the Board of Trustees.
- Beyond her professional role, Vicky is a runner and an active member of the local running club. She takes part in Parkruns and marathons and enjoys the personal challenges – and welcomes the friendships – she had gained from the running community.
Helen Darling
Membership
Co-ordinator
- Helen was a qualified British Gymnastics Coach and Judge. She originally volunteered for the charity and was struck by the importance of the work being done to help people with ME/CFS. When a job was offered in 2012, she welcomed the role and the extra responsibility she has assumed in the years since then.
- Helen is responsible for membership co-ordination, downloading and processing website shop orders and dealing with emails received by Head Office. She maintains the charity’s central membership database and generates the renewal and reminder letters and helps with Gift Aid reclamations.
- Outside of work, Helen enjoys golf and is very keen on American Football. She reads a lot of books and loves spending time with her grandchildren. She is busy working through her bucket list of activities which has included driving a steam train and completing the UK’s longest and world’s fastest zip-line!
Angie Bedborough
Administrative Assistant
- Angie is married with two grown up boys. She has a border collie and has to enjoy walking, managing 5 kms a day! She’s worked in various roles including many years in retail, and in management at BP. She has had her own cleaning business and assisted in the preparation of events at a private school.
- She retrained as a pharmacy dispenser which she thoroughly enjoyed, but after contracting Covid she decided to leave and joined the charity in 2021. Her role includes helping with new memberships, renewals, and donations, dealing with queries on the phone, liaising with suppliers and employees of the charity, and taking payments and orders for merchandise from the shop.
- She loves working for the ME Association and helping people, regarding her employment as the best decision she ever made.
David Biggs
Merchandise & Post
- David is semi-retired after many years in the automotive and photographic industries.
- He is now working at Head Office in Gawcott, Buckingham sending out leaflets, T-shirts, and New Member packs etc. and checking incoming mail.
- His hobbies include, writing, recording and playing his own songs, motorcycling, and learning how to garden by trowel and error.
- He has been enjoying his time at Head Office for just over 1 year and yet no-one can make his coffee correctly.
- David is also head of archiving and light entertainment at the office.
Debbie White
Administrative Assistant
- Debbie has worked for the ME Association for just over 3 years and really enjoys the varied, caring work and being part of a lovely team. She loves the opportunity to make a positive difference to people’s lives.
- She previously worked for many years as a legal secretary, was a partner in a family business, worked with young children in schools and playgroups, and for 10 years in the NHS in a variety of administrative roles.
- Debbie used to enjoy all types of sports but had to give most things up due to Rheumatoid Arthritis. Having had the condition for at least 25 years, it helps her to empathise with the frustration, difficulties and pain that people with ME/CFS experience.
- For many years she has practiced qigong and meditation which she finds can help to ‘recharge my batteries’. She facilitates a group for The Compassionate Friends, for bereaved parents, which has led to her befriending some amazing people.
- Debbie’s a big animal and nature lover and when able, enjoys walking in the countryside. She has 2 daughters and 1 teenage granddaughter. She loves to potter in her garden, roaring log fires, and a good book.
Sarah Swan
Finance Assistant
- Sarah has more than 20 years of experience in finance/accounting and has worked for a wide range of companies from large well-known businesses to SME's.
- She has mostly worked in industry but spent a few years working in accounting practices as well. Sarah had to give up employed work due to ME/CFS a few years ago and has been working as a freelance bookkeeper since then. Sarah is very pleased to be able to work for the ME Association.
- Outside of work, her energy is mostly taken up with family but she looks forward to the day when she can get back to doing all the things she used to enjoy!
Theresa Holmes
Accounts and Administrative Assistant
- Theresa is married and her husband has had ME/CFS since 2005. They have 1 grown up daughter (and 4 cats!). In her spare time, she enjoys driving classic cars and meeting fellow enthusiasts. Travel is another passion, including weekends away in the UK and travelling abroad, especially to America.
- She worked in the NHS for 43 years. Upon qualifying as an SRN, she worked on a busy surgical ward, and became a Sister and Nursing Officer in charge of two surgical units. This was followed by an exciting role as Sister in charge of the ‘Flying Squad’ in A & E and dealing with motorway accidents and other critical events.
- She then moved to being Senior Sister in A& E, running the nursing team, dealing with life threatening illnesses, carrying out specialist procedures including suturing faces and fingers. She became a Senior Sister within the surgical sector with the additional responsibility of being in charge of the whole hospital in the evening.
- As if those challenges weren’t enough, Theresa completed 3 nursing degrees in her 40s and 50s: District Nursing, Community Practice Teaching, and Advanced Specialist Practitioner in District Nursing. Her work as an ASPDN resulted in the Queens Nurse Award for Innovation in District Nursing!
- After 2 years of retirement Theresa joined the ME Association as an Assistant to Vicky Smith. In this role she focuses mainly on the charity’s finances predominantly managing PayPal, and tracking payments of invoices and bills. She also helps with the post and with stock control and other general office duties.
ME Connect
Katharine Leat
ME Connect Manager
- Katharine was delighted to be appointed ME Connect Manager in January 2024. She believes it is a wonderful opportunity to support an amazing team of staff and volunteers as they provide support and information to anyone whose life has been affected by ME/CFS or Long Covid.
- She lives with her husband and their beautiful rescue animals in rural Norfolk. She loves all animals, being outdoors whenever possible, vegan cookery, writing stories and Liverpool FC!
Glenys
Senior Volunteer and Volunteer Trainer
- Glenys became a volunteer with ME Connect in 2006 having had to give up her job as a primary school teacher due to Fibromyalgia and ME/CFS which were diagnosed in 2001.
- As well as her weekly shift on the Helpline, Glenys assists with interviewing and training new volunteers.
- She also volunteers for the NSPCC’s school’s service, enjoys knitting, jigsaws and spending time with her 2 delightful little granddaughters.
Sue
Senior Volunteer and Volunteer Trainer
- Sue has been a volunteer with ME Connect for about 20 years.
- She works on the helpline each week, and also leads the ‘Volunteers Connect’ group, where volunteers can come together and chat in confidence about their helpline experiences.
- Sue was a physiotherapist until she got ME/CFS and retired early. She has recovered sufficiently to lead a full and rewarding life.
- She lives in the New Forest with her husband Ray, where they enjoy walking. Sue loves dressmaking and studying local history, as well as volunteering with the local hospice.
Ella
ME Connect Assistant Manager
- Ella joined the ME Association in June 2024. She is so grateful to have the opportunity to support those impacted by ME/CFS and Long Covid.
- Ella has Long Covid induced ME/CFS. She got Covid in 2021, just as she was graduating from University. After some time of trying (and failing!) to work full time, she is so pleased to be working at the ME Association, alongside such a caring team. Ella contacted ME Connect when she was struggling, and is so happy to now be part of a team that helped her.
- Ella lives in Hertfordshire, with her fiancé and beloved cat Cece (named after her New Girl obsession! Cece joined Ella’s family the day before she started working at the MEA, and has been the best working from home companion!). Ella volunteers for a Holocaust charity, sharing the story of her Grandpa’s Holocaust survival, and is also training to be a therapist. Her hobbies include listening to Taylor Swift and One Direction, and watching Friends on repeat.
Emily
ME Connect Officer and Volunteer Trainer
- Emily joined the ME Association in June 2024 as an ME Connect officer. Emily is incredibly excited about the opportunity to work at the MEA, as she is passionate about helping people with ME and Long Covid.
- Emily was diagnosed with ME in 2010, causing her to have to attend school part-time and give up her favourite hobby, ballet. Her experience of ME means she understands how valuable services such as ME Connect can be.
- In 2023, she graduated from University with a Psychology degree. She used her dissertation as an opportunity to understand the lived experience of university students with ME; in the hopes of highlighting the challenges faced by people with ME in higher education in order to help others reach their potential.
- Emily loves spending time with her family, including her baby nephew Ned, listening to Taylor Swift and getting out in nature, whenever possible, in her sticker covered wheelchair.
Michael
ME Connect Officer
- Michael was so pleased to get the opportunity to work for the ME Association. It was the first charity his father called after suspecting that he had ME and they helped by guiding him in his next steps. Which led to a diagnosis. It feels like it’s come full circle and with his experience, looking forward to helping others.
- Michael was diagnosed with ME in 2006 after glandular fever left him unwell from 2004. Although there have been periods of better health, he relapsed in 2015 which ultimately meant he was medically retired in 2017 from being a Butler to a Private Household in London; a position he had since 2000. Now very excited to assist the MEA with the ME Connect team.
- He lives with his wife Lindsay and two daughters Aurora and Astrid in Windsor. Loves music, plays guitar a little and loves football – supporting Liverpool through all the ups and downs.
Jules
ME Connect Officer
- Jules joined the ME Connect team in September 2024 and will provide support to callers on the ME Connect helpline and emailers with enquiries.
- Jules' involvement with the ME community started when her son became ill in 2023 so she has first hand experience of having to support an adolescent with pacing and the impact the illness can have on family dynamics and daily life.
- When not working at MEA Jules' volunteers for her sons' school, walks their very active border collie and tries to bring some sense of order to family life and their unruly garden!
- Jules lives with her family (husband and two sons) in the Peak District on a 250 year old (non-working) farm where they welcome holiday makers and host families wanting special celebrations with loved ones. They strive to offer the best personal service and are proud of having 5 years with a 5* rating.
Rev. Neil Barrett
Volunteer Chaplain
- ME Connect is delighted to offer additional support through ‘Time to Talk’ with the Rev. Neil Barrett who is generously volunteering his time. This offer is open to all. If you would like a 30 minute Zoom call with Neil, please contact ME Connect, provide an email address, and we will get back to you to arrange an appointment. Please note your email address will not be shared with anyone else.
- ‘ME/CFS & Long COVID can be isolating conditions with a wide range of emotions attached to them. Often the people around sufferers find it difficult to understand and those suffering can find it difficult to express how they are feeling. Both can often lead to more frustration and anxiety. And many people feel abandoned by society physically, emotionally and spiritually.
- Therefore, I am offering the opportunity of a conversation online, where you can just be. Where you can share how you are feeling with no judgement or pressure to feel anything other than what you feel in that moment or to be anyone other than who you are. A space just for you, where you are valued and understood.’