ME Support (IOM) have produced a series of ‘vodcast style’ videos to explain the core principles of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).
The charity’s aim is to create greater awareness of the issues facing those unable to swiftly recover from a viral infection.
Craig Morris, Vice President of ME Support (IOM), explained: ‘ME / CFS is a chronic condition that can develop after someone, of virtually any age, contracts a virus. Before the viral pandemic began, it was estimated that around 300 people on the Isle of Man suffered from ME / CFS and we expect that figure has increased over the last 18 months. The actual impact is even greater when you consider how each illness affects the patient’s partner, their close family, their social circle and their employer or school.’
What is ME / CFS?
Dr Charles Shepherd, Honorary Medical Adviser for the ME Association, is one of the UK’s leading medical experts on ME and post-viral syndromes and his views are frequently sought by the press, radio and television. He has recently been interviewed about ME/CFS and Long Covid on BBC Radio 5 Live, BBC Newsnight and The Doctor (BMJ publication). Earlier this year, Dr Shepherd spoke to Juan Corlett, ME Support (IOM) Committee Member, and explained the basics of the illness:
Juan Corlett interviewed Lesley Pickering, Specialist Occupational Therapist from North West Fatigue Clinic, to explore the basics of living with ME / CFS. The topics covered were quite broad, but included the following examples:
Can ME sufferers expect to get better?
Why post viral fatigue is not normal tiredness
What does Boom & Bust Cycle mean?
How to increase activity
Little ideas to raise a smile
Understanding ME / CFS – for friends & family
How can setbacks or relapses happen?
Juan fell seriously ill in August 2018 and recalls that he was “shocked by how little help was available at the time.” Explaining his motivation, he said ‘I don’t want others to feel so lost and without guidance. I hope that the clear explanations Lesley has provided can make a real difference for others, particularly anyone recently diagnosed.’
Links to each chapter of Juan and Lesley’s discussion are listed below:
1 Intro & what is energy
2 Activity Management
3 Boom & Bust
4 Rest Relaxation Sleep
5 What Fuels Fatigue
6 Variety of Options
7 Fun & Enjoyment
8 Friends & Family
9 Physical Activity & Exercise
10 Acute Illnesses & Setbacks
11 Full Interview
Disclaimer From ME Support (IOM)
ME is a complex illness and each individual’s experience of the illness is unique to them. Lesley Pickering advocates 1-to-1 occupational therapy sessions as one of the most effective interventions to treat those with ME/CFS. ME Support (IOM) remains focused on pressurising Manx Care to deliver a well-resourced and patient centred ME service but hope that local ME / CFS sufferers will find these interviews useful while we await further progress by Manx Care.
Medical information contained in these videos is not intended to be a substitute for medical advice or treatment from your doctor or healthcare professional. You should always consult your doctor or healthcare professional about any specific problem. We also recommend that any medical information provided by ME Support (IOM) is, where appropriate, shown to and discussed with your
doctor or healthcare professional.
ME Support (IOM) did not design this content for use by Long Covid sufferers, but acknowledge that some of the information may be useful in understanding the general principles of post-viral conditions.
Bio – Lesley Pickering – North West Fatigue Clinic.
Lesley Pickering is Director and Specialist Occupational Therapist of North West Fatigue Clinic. Lesley qualified as an Occupational Therapist in 2010 (BSc HONS) and gained immediate employment with both Lancashire and South Cumbria ME/CFS NHS Service and Pendleside Hospice, where she introduced the role of Occupational Therapist to both multidisciplinary teams. This involved educating existing team members on the role of OT and offering interventions on all aspects of fatigue management, anxiety management, breathlessness management, general OT practice and more.