Caring for People with Severe or Very Severe M.E.

Image by Greg Crowhurst

Caring for a person with Severe/Very Severe ME requires great sensitivity.

We recommend a range of resources about Severe and Very Severe ME developed by Greg Crowhurst and Linda Crowhurst. Greg is a qualified nurse and has many years experience caring for his wife Linda who has suffered with Very Severe ME for decades. We have often shared information about caring for someone with Very Severe ME by Greg and Linda because we feel that the resources provided by them capture and highlight a significant expertise in caring for someone with Very Severe ME which does not exist in any ME Guideline/Criteria/elsewhere. Greg and Linda have been extremely generous sharing about life with Very Severe ME, generous with their time and energy, and without that exceptional generosity we are not sure we would fully and wholey understand Very Severe ME.

Resources

1. Website

You will find a range of resources on Greg’s website which includes various books available to purchase (some are free on kindle): here or copy and paste this link: http://stonebird.co.uk

2. Carers Notes

- 'Caring for Someone with Severe ME': here or copy and paste this link: https://stonebird.co.uk/care.html

- 'The Basic Principle Behind Severe ME-Aware Care': here or copy and paste this link: https://carersfight.blogspot.com/2018/09/the-basic-principles-behind-severe-me.html

- Moment Approach: The Paradox of Caring for People with Severe ME: why a Moment Approach is necessary: here or copy and paste this link: http://carersfight.blogspot.com/2018/12/the-paradox-of-caring-for-people-with.html

- ' Issues of Noise, Light,Touch, Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers need to be aware of’: here or copy and paste this link: https://stonebird.co.uk/hypersensitivity.pdf

3. Carers Resource Books

- ‘Caring for ME, a Pocket Book Course for Carers (2018): here

- ‘Severe ME, Notes for Carers': here

- ‘Severe ME More Notes for Carers’: here

4. Five Important Lessons worth Learning when Caring for Someone in Severe Pain with Profound Hypersensitivities by Greg Crowhurst

When you help someone in severe pain, unable to communicate easily, with severe hypersensitivities to ordinary environmental things like sound, light, movement, smells, physical contact or your presence, then you need to understand the following: - Do exactly as you are asked to do things, at the exact time that you are asked to do them, in the exact way that you are asked to do them. The person you are helping may not react the way you expect, when trying to help them especially if you mistime or fail to help in the right way that they need. They may, as a consequence, deteriorate physically, making help impossible to repeat or try again, meaning the need may end up going unmet in that moment. They may respond irritably or cry out.

- Do not take it personally, but maintain a sense of boundary between yourself and the person, which enables you to see clearly under pressure and understand the difficulty the person is having with the way you are interacting. Take responsibility for your own actions and their impact; this is such an important awareness to develop.

- Do not blame the person, if you get it wrong or if they are unable to tolerate your presence at any given moment. This is the time to wait for the right moment in order to re-engage to meet need tenderly and help them feel you know what to do and how to do it. Great kindness, awareness, compassion, patience and skill are required. Learn how to wait till any interaction or intervention is tolerable or acceptable to the person.

- Just because something, in front of you, looks quick, simple and easy to do, because for you it takes no effort, does not mean that the person you want to help can equally tolerate it. This is where great patience and understanding are required. This is where how you care becomes vital. There are so many aspects to an action that you may not notice or be aware of yourself, which will be painfully obvious to the person and may be impacting the person negatively. Even doing what may seem to you like something small, simple and unnoticeable, such as scratching your head, shutting a door too loudly, switching on a light briefly, picking something up in a way that seems quiet to you, going to fetch something,may still unintentionally, endanger health or increase the level of pain, cognitive dysfunction, confusion, exhaustion, weakness for the person. Make sure that you are not putting additional obstructions in the way of meeting need by meeting your own need to feel that you are ‘doing something’ when that ‘something is not wanted or tolerable and will make things extra hard to get vital help.

- Understand that the environment, itself and you, yourself, within that environment are constantly, invisibly impacting the person, even if you are not noticing it. Every action, movement, sound, change, that you bring to the person’s environment can, in theory, be positive, neutral or negative. Never be complacent about this; keep developing your awareness as much as you can, it is crucial. It is vitally important to learn as much as you can about how the person’s symptoms impact them, how severe each symptom is and how much worse it can be made, accidentally, even with the best will in the world. Understanding and awareness of how each moment can be a moment you help or hinder the person, is key to providing sensitive, aware, person-centred care. So try to be the best carer that you can be. Learn and grow together, remembering every noise, every movement, every action that you make, matters more than you will ever be able to fully understand.

- Greg and Linda Crowhurst

5. Supporting People with Severe Myalgic Encephalomyelitis in a Hospital Setting

by Greg Crowhurst in the Nursing Standard: 19, 21, 38-43. September 28 2004

The linked article aims to raise nurses’ awareness of Myalgic Encephalomyelitis (M.E.) Key symptoms are presented along with possible service responses and treatment options. It emphasises that this condition is often misunderstood but that it can be serious, and more research is needed to promote better understanding of the physical symptoms.

Nurses & Others Supporting Severe ME Patients

Much thanks to Greg Crowhurst and Linda Crowhurst, two remarkable individuals we have been lucky to have in our global M.E. community.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance.