ME Research UK - letter explaining how things are for people with ME/CFS.
Letter sent to major supermarket chains and UK Government from UK ME charities and the All Party Parliamentary Group on ME
Posted on 27 Mar 2020
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.
Sonya Chowdhury, Chief Executive Action for M.E.
Nigel Riley, Chair, ME Association
Sue Waddle, Vice Chair, ME Research UK
Esperanza Moreno, #MEAction UK
Helen Winning, Chief Executive, The ME Trust
Simon Lawrence, Chair, The 25% ME Group
Jane Colby, Executive Director, Tymes Trust
Janice Kent, Director, reMEmber
Dr Nina Muirhead, Chair, Medical Education Group UK CFS/ME Research Collaborative
Dr William Weir
Dr Nigel Speight