Neil Riley, Chairman, ME Association.
The ME Association is continuing to support people with M.E. during this unprecedented and evolving world crisis. We have now joined with others to highlight the immediate challenge faced by some people with M.E. in accessing food, and to ask for immediate action.
The letter below has been signed by members of Forward-ME and the All Party Parliamentary Group for M.E., and sent to the UK Government and major supermarket chains.
It highlights how some people with M.E. have relied on home delivery as they are unable to get to the shops and are now struggling to access delivery times because of the increased demand.
The situation across the country during this pandemic remains fluid. We are receiving many comments about shopping, some of which are telling us that home delivery and click and collect slots are becoming available for those who are vulnerable, while for others the situation remains dire or family, friends, and the local community are stepping in to provide needed support.
If you have regularly received home deliveries in the past, then you will have been contacted several times by the chief executives of the supermarket trying to keep you updated on the steps they are taking to improve the supply situation. But often these initiatives do not filter through to local stores and delivery slots remain hard to come by for most people who are housebound or reliant on the care of others.
- If you have a diagnosis of ME/CFS you should be considered ‘vulnerable‘ and be able to tell the supermarket online, which might give you a priority delivery where possible.
Or you can ask someone else to get your groceries for you – many supermarkets are now opening specifically for vulnerable people and their representatives at key times during the week. Check your local supermarket websites for availability.
If you don't have immediate friends and family who can help, then check your local community website or speak to people you know who live nearby and see if there are local support schemes in place.
- If you have a diagnosis of ME/CFS and another underlying health condition that makes you ‘extremely vulnerable‘, you can register on the Government website for additional support and help which will include grocery and medication deliveries.
If you are able to get home deliveries, then you may have to bring the groceries into your home yourself – when before the driver might have done so for you.
People who are having friends and neighbours or community support deliver their groceries and medications are often having them leave the goods on the doorstep.
You might benefit from having a friend or family member be available to help you unpack while you remain at a distance. Or to do so as best you can yourself, if you live alone and need to practice social distancing measures.
While most supermarkets seem now to have removed the need for you to sign for your delivery, you should thoroughly wash your hands after touching and moving groceries (as well as letters and parcels) that have been delivered.
We are also hearing that local stores can often provide necessary items whereas supermarkets might not. Some local communities have successfully organised themselves to provide help and support to those in need by utilising the produce available nearby.
Letter Sent to Supermarkets
We are writing on behalf of the adults, children and young people we support who have Myalgic Encephalomyelitis (M.E.) (also known as Chronic Fatigue Syndrome, or CFS), asking for your help.
The Government has identified that people with chronic neurological conditions, including M.E./CFS, are at increased risk of severe illness from Coronavirus.
More than one in four people with M.E./CFS are so severely affected that they are unable to leave their homes independently, and even those with the milder form of this non-visible illness struggle to access services and support.
Many of those we support have relied on the excellent home delivery service you offer for years, to get food and essential supplies. But over the past few weeks the increased demand has meant they are unable to compete with healthy people who are able to spend longer online, searching for slots and sourcing deliveries.
We are also hearing from those who are able to visit stores who have tried to use the dedicated shopping times for those at risk – but who have been challenged because the debilitating pain, fatigue and cognitive difficulties that come with this non-visible condition cannot be seen.
We are now seeing a huge increase in the number of calls to our already busy helplines, with many telling us they do not have any food in the house.
While those who are house/bed-bound are not necessarily included in the Government’s official category of “vulnerable,” this does not give the full picture.
This group of increasingly desperate people are unable to visit a store and many have no friends or family to support them. They need urgent help now – please will you:
- include those house/bed-bound by M.E./CFS in your priority access group for your online service?
- allow those with M.E./CFS, who are able to leave the house, access to priority shopping times in store?
We would be happy to provide our members with a resource they can download that shows they have a chronic neurological condition and are eligible to use this service.
Our teams are happy to help answer any questions or provide more information.
Carol Monaghan MP
Chair, APPG for M.E.
The Countess of Mar
Chair of Forward-ME
Ben Lake MP; Jim Shannon MP ; Mark Tami MP Dr James Davies MP; Edward Davey MP: Alex Sobel MP; Dame Diana Johnson MP.
Chief Executive Action for M.E.
Chair, ME Association
Vice Chair, ME Research UK
Chief Executive, The ME Trust
Chair, The 25% ME Group
Executive Director, Tymes Trust
Dr Nina Muirhead
Chair, Medical Education Group UK CFS/ME Research Collaborative
Dr William Weir
Dr Nigel Speight
Image credits: 123RF/IanAllenden
The ME Association
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