Severe ME care resources
ME affects roughly 25% of patients severely, leading to them being housebound or bedbound at some point in their illness. Some remain very ill and become so weak they have died.
It can be a challenge to provide health and social care for these patients as light, touch, sounds, smells, food and medications can all add to their pain and distress and increase the intensity of their symptoms. Travel to clinics and offices are highly stressful and they require assistance at home from people who are sensitive to the individual needs of the patient.
The method of approaching severely ill patients is as important as the care offered. Two methods have been suggested: The MOMENT approach and Compassion in Practice
Greg Crowhurst RN has devised the MOMENT approach while caring for his wife.
MOMENT means : Maximising the Opportunity to Meet Each Need Tenderly
Looking for the right moment to help is your primary aim, because the person with Severe ME is extremely hypersensitive to the environment and vulnerable to harm. Read more
With the moment approach you need to grasp this idea that a moment in time can make all the difference to the person with Severe ME; that even when something is totally impossible in one moment, it may be achievable in the next. We daily hope for better moments.
Researchers and clinicians found severely ill patients with ME had suffered decades of neglect and disbelief. They recommend: “the Health Care Provider has a responsibility to provide care through a relationship based on empathy, respect and dignity. By supporting the individual with compassion and competence and acknowledging and learning from the patient’s experience, the encounter with the housebound patient can be both effective and worthwhile.
The first step in the therapeutic relationship is:
- to believe and trust the individual
- to articulate that you, the practitioner, hear what your patient is saying
- and recognise that their experience is legitimate.
Doctors, nurses, patients and carers give practical advice on caring for severe ME
– a comprehensive reference book has been written by Emily Collingridge (1981-2012) a patient with over twelve years experience of severe ME, in consultation with over thirty patients, carers, friends, relatives and health professionals.
Paediatrician Dr Speight describes the challenges for doctor, the clinical features, symptomatic and supportive treatment and case studies.
Physiotherapy CAN be beneficial for people with severe ME, if approached carefully, in terms of:
- Pain relief
- Postural management / prevention of contractures
- Improving and maintaining respiratory health
- Equipment provision and activity modification to improve quality of life