Written evidence submitted by Action for M.E (COV0024)

What is M.E.?

1. Myalgic Encephalomyelitis (M.E.), sometimes referred to as Chronic Fatigue Syndrome (CFS), is a serious, chronic, complex, multi-system condition. People with M.E. experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.

2. One in four people with M.E. are severely affected, leaving them house- and/or bed-bound[1]. According to our 2019 Big Survey[2] 85% of severely affected people rely on a family member for their care needs with others using professional services.

What is Action for M.E.?

3. Action for M.E. is a UK charity and we take action to end the ignorance, injustice and neglect faced by people with M.E. We do this by meeting need now to improve the lives of people with M.E. while taking action to secure change for the future.

4. People with M.E. are, as always, our priority. We are working to ensure adults, children, young people and families living with the illness are supported during this unprecedented time, and beyond. We have re-shaped all our services into our new Crisis, Support and Advocacy Service for anyone living with or supporting someone with M.E. of any age, anywhere in the UK. We are:
1. sharing information about all aspects of living with M.E., including welfare benefits, social care, symptom management and accessing health services
2. offering emotional support, including coping in these particularly challenging times
3. sourcing practical assistance local to you, such as your local mutual aid group, parish council and/or community hub; we can also source local producers/food outlets who are making home deliveries
4. advocating for your needs, explaining processes in an accessible way, and supporting you to challenge the opinions of others in situations that affect you, including supporting you to contact your GP to ask them to refer you for support for vulnerable people
5. offering peer-mentoring support (in Scotland only), to share experiences and insights into living with or caring for someone with M.E.

5. In addition to this service we are continuing to provide essential support by:
1. calling our Supporting Members to make sure they have the information and support they need.
2. keeping our website up to date with the latest on Coronavirus and M.E., and sharing these updates on social media, specifically Facebook, Twitter, and Instagram.
3. promoting our peer-support forums for adults with M.E., parents of children and young people with M.E., and 18s and under with M.E. They are all completely free and users tell us they feel better supported, and less isolated.
4. continuing to provide up to date booklets and factsheets on life with M.E.
5. producing our regular InterAction magazine which is full of news and research updates, as well as information and support regarding the Coronavirus pandemic.
6. In response to the immediate need for food and supplies, we wrote to major supermarkets to highlight the difficulties housebound people with M.E. are experiencing. The replies we received highlight that because of the strain the supermarkets are under, they are only able to work from the list the Government gives them despite it only considering those who are ‘clinically vulnerable’.

What are people telling us?

7. Many people with M.E., along with other disabling conditions, have relied on supermarket home delivery services for many years as a way of accessing food and essential supplies. The sudden increase in demand has resulted in people losing the slots they have relied on and they are now having to compete with able-bodied individuals for deliveries. There has been no attempt to safeguard those who are housebound with a disability but are not clinically vulnerable to Covid-19.
8. Others with more mild symptoms are able to leave the house but have to plan very carefully. People have told us that the queues experienced outside shops have made it hard to predict and manage their energy levels leading to them experiencing worsened post-exertional malaise.
9. Many people with M.E. suffer from food intolerances[3] and have told us that they are unable to get the basic necessities they need because of other people stocking up. One person with M.E. told us that she is unable to maintain a healthy diet because she cannot access the specialist food she used to rely on.
10. Information has been conflicting and confusing.
11. There has been what is described as a ‘postcode lottery’ of support from GPs in accessing priority lists for food delivery. We asked people with M.E. to share their experiences of this on our social media[4] and received around 300 comments, as follows:
1. some were able to go to their GP for support
2. knew nothing about how to help them access the list
3. refused to help them access the list
4. said it was nothing to do with them.

Recommendations

12. Introduce a commitment that no one with a disability should go hungry due to difficulties in accessing food. This can be achieved through widening existing support to include those who are housebound or have mobility issues.
13. Introduce a dedicated support line and email address for those who are at increased risk of severe illness[5] and/or are housebound with a disability to access timely advice and information relating to Covid-19.

Case study

Kelly from County Durham

I have M.E. among other conditions that make me disabled and mostly housebound. I live alone and rely on online deliveries for things like food. 

I have been desperately trying to get on the supermarkets’ vulnerable persons list but I have phoned hundreds of times and can't get through to them. None of the supermarkets have a dedicated phone line or email address for this and I don't have the energy to keep calling as I crash by 2pm every day and need to sleep. I have tried the government website but it seems to exclude people like me. 

I contacted my local MP who contacted the supermarket CEOs, but the response was disappointing to say the least. I told him people like me are being forgotten about. I don't have cancer or heart disease and I'm not over 70 so I'm not considered ‘vulnerable’ by the government. Yet, I live alone, have mobility issues and I am mostly housebound. I don't have anyone to help me. I tried the local volunteers thing but they are basically like a food bank. I can pay for my food, I don't want to take food bank food from people who can't afford it and need it. Not only that but the food they gave me was stuff I am unable to cook as they involve stirring or actually cooking instead of things I can just put in the oven. 

I want to be able to choose which food I eat and pay for it like able-bodied people can.