I have close friends who’ve suffered from ME for years, and know how debilitating it can be. I wanted to use my professional skills to manage an organisation that’s doing something very practical to help.
The World Health Organization classifies ME (Myalgic Encephalomyelitis) as a neurological illness recognised since the 19th century. It’s characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. More research is needed to establish the causes and the triggers for the disease and to develop a genetic marker or test, as for MS.
ME can last a few months or for many years, and there’s no cure. Some teenagers and young adults miss out on school and university, but make a complete recovery and go on to live a normal life. Others can be housebound for years, and, even if they get better, find they relapse into a cycle of relapse and recovery.
We’re still some distance from identifying the causes, or establishing whether there could be a genetic predisposition to the illness; so we’re encouraging our clients to take part in important research by the UK Biobank.
There are about 250,000 people in the UK with ME or Chronic Fatigue Syndrome, and about two million worldwide. Roughly a quarter of these are housebound or bedbound. Life can be very lonely and isolated, especially for those who have extreme sensitivity to light, sound, and touch, and who are confined to bed.
We’re a small organisation; so I’m involved in everything from policies to petty cash, recruiting staff, and keeping in touch with our clinical team.
I’m a jack-of-all-trades. I’ve had several senior management posts in arts, charities, and healthcare. My original training was in accountancy, and I have qualifications in HR and fund-raising.
I organise fund-raising events, apply to grant-making trusts, and work with our trustees on strategic planning. Opportunities for fund-raising have suddenly reduced dramatically; so we’re having to think creatively about how to raise money in the new virtual world.
All our meetings are by Skype or Zoom, but the demand for our services remains constant. We’ve had to cancel face-to-face clinics and home visits for the time being. We’re still able to help clients by phone, Skype, and email.
At the end of last year, the ME Trust was rated “Outstanding” by the Care Quality Commission. It’s very encouraging, and we hope it’ll also help if we apply for NHS contracts to give us a longer-term funding stream.
The ME Trust was founded in 2011 by Hannah Clifton, after her recovery from ME which had kept her bedbound for over ten years. She was healed at Burrswood, a Christian Hospital, in Kent, that pioneered a whole-person care approach to treating people. Burrswood’s closure is a tragedy that still hurts because it was a unique combination of conventional medicine and Christian healing (News, 6 September 2019). It would be my dream to create a national centre of excellence for research and treatment of ME.
Our service is built on the Burrswood model, and offers a multi-disciplinary team with a doctor, nurse, and physiotherapist, counsellors, and chaplains who support ME sufferers at a face-to-face clinic in Crowbrough, by phone or home visits, if they are practicable, for as long as they need us. We treat people of all faiths and none, but many of our staff are Christians, and I believe that that has a real bearing on the way we behave with people.
The current pandemic is making it harder for many patients to cope. For example, they’re having to compete with other people to get home deliveries when for them it’s the only way of shopping for groceries and essentials. But many of them could teach us about resilience and fortitude. Enduring a limited and often isolated life is something they’re very used to. Life hasn’t changed much on one level — they’re still isolated and often alone. They’re vulnerable to infection and worried how they’d cope if they or their carers fall sick.
A consultation with our doctor can be the first time a patient feels heard, and their symptoms validated. Our doctor will always liaise with someone’s GP to help them access NHS services and prescribe appropriate medication, and will make follow-up calls.
Some employers are better than others at recognising ME as a genuine illness and accommodating people in the workplace — for example, giving them regular breaks and time out, to pace their energy during the working day. Getting benefits is a constant battle, and a diagnosis or a letter from our doctor can sometimes help.
Our nurse offers on-going support, and the physiotherapist advises on making daily life more manageable — for example, on finding a suitable resting or sleeping position, pacing, and gentle physical activity. This is not the Graded Exercise Therapy which was for a time promoted by NICE [the National Institute for Health and Care Excellence], but a patient-led and patient-centred approach. New NHS guidelines are due out in 2021, but may well be delayed by the pandemic.
Our counsellors offer a range of therapeutic input, from emotional support for those who are fragile to counselling for those who are well enough to commit to it. They help people deal with the complex psychological effects of living with long-term illness.
Our chaplains walk alongside people during their journey with ME, and families and carers, who are often equally isolated and discouraged.
I grew up in the 1960s in Sheffield. My mother was a singer and my father a violinist. I learned the piano, but my passion was for theatre, and I’ve been involved in both amateur and professional theatre for much of my life.
Music is beautiful, and it requires you to focus; so you have to leave everything else behind, which is healthy. I sang in Gareth Malone’s Home Chorus, which was nice for half an hour a day, and then the Self-Isolation Choir, which was more serious, for a public performance of Handel’s Messiah with international soloists online, at the end of May.
I went to church and Sunday school every week, but my first real experience of God was when I gave birth to my first child. Suddenly, I felt involved in the cycle of life, the power of the Creator God, and God the Father. Since then, I have come to know him better, to experience him as Son and Holy Spirit, and my relationship with him is a very important part of my life.
Starting again was the bravest thing I’ve ever done. In one year, my father died, my husband and I divorced, I downsized from my home, was made redundant, and our dog was re-homed. Picking myself up, being strong for the children, who were teenagers then, while dealing with grief, finding a new job, and starting over again was hard.
My children are grown up now, but under normal circumstances I love nothing better than the family round the table for Sunday lunch.
I’d like to feel that I’d helped in some small way to make life better for people. I’d also like to leave some form of artistic endeavour behind. Perhaps I had better get on with writing that novel. And I’ve always had a yen to visit Australia.
Injustice makes me angry. Waste. Cruelty.
I love the sound of my granddaughter’s laughter. Birdsong in the woods on my daily walk.
Apart from the health and well-being of my family and friends, I pray to know what God wants me to do in life, for an ear to hear the answer, and courage to carry out his will.
I’d love to be locked in a church with Shakespeare. I’d love to know if he really did write all those plays. Or Agatha Christie, to ask how she wrote so many bestsellers.
Helen Winning was talking to Terence Handley MacMath.