ME Charities and APPG on ME write to Supermarkets & UK Government.

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
 

Guidance on social distancing for everyone in the UK and protecting older people and vulnerable adults.

• The UK Government announced new guidance with regard to people with underlying health conditions and Social Distancing.
This guidance is for everyone. It advises on social distancing measures we should all be taking to reduce social interaction between people in order to reduce the transmission of coronavirus (COVID-19). It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers.
 
• The ME Association gave a new detailed ME Association Guidance on 17 March following the Government’s announcements that day - Coronavirus Covid-19: Latest Government advice and what it means for people with ME/CFS.  Dr Shepherd explained that the UK Government has released new advice and recommendations that will affect people with ME/CFS.

Further comprehensive information is available from the MEA Guidance published the previous day -  'ME Association Guidance: Coronavirus and ME/CFS by Dr Charles Shepherd' on 16 March.
 
The MEA explained, that with the UK government now moving on from attempted containment of the virus to delaying the spread, we have also reached a new stage when it comes to how people with ME/CFS should be reducing the chances of catching this infection.
The MEA said the key preventative measures remain exactly the same:
– avoiding infections on surfaces by keeping them clean, wherever possible,
– thoroughly washing hands and wrists after touching surfaces away from home,
– not touching your face,
– keeping well away from anyone who has any signs of an infection,
– keeping a safe distance from everyone else – even people you know!   
 
• #MEAction now have a COVID-19 RESOURCES page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME.
 
• Action for ME (AfME) now have  a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

• #MillionsMissing will be virtual this year. 
The situation of COVID-19 is rapidly changing. We wanted to be optimistic that this situation would improve for the better, but even in the last 48 hours the situation has dramatically shifted. The WHO is officially classifying the virus a pandemic. COVID-19 is now affecting more than 127,000 people worldwide. 
We can’t in good conscience, continue with in-person #MillionsMissing events. We care about the health of you and every person that would have come to these events. We are still doing #MillionsMissing on May 12th. It will all be virtual. Our community has always had a strong, powerful, and supportive virtual presence. This event will be no different. 

• Occupy M.E.  Safety in Isolation.   
A helpful blog from Jennie Spotila, giving information on physical/emotional safety while we all live with new restrictions and social distancing/isolation, particularly useful for people with ME and their families and friends.
 
Take care, and stay safe everyone.

(post updated on 21 March)

The Worcestershire ME Social Group Lunches and Afternoon Café Meetings are being cancelled for the time being, due to the situation with Coronavirus (covid-19).

This includes the social gathering on Monday 23rd March, plus dates on the Worcestershire ME Social Group website - http://worcsmegroup.weebly.com/meetings.html

Our Coronavirus (COVID-19) blog gives guidance for people affected with ME/CFS.  It will be updated shortly with the latest situation, giving information from the M.E. national charities.

Dr Charles Shepherd, Hon. Medical Adviser, ME Association, provides updated information about the virus and how you can help prevent infection.  The ME Association issued information and guidance about the coronavirus in early February.  To take into account the changing situation in the UK, this is now being updated and issued on a weekly basis.

Dr Charles Shepherd, gives detailed Coronavirus - Covid-19 information, covering:  ‘Symptoms’, ‘Who is most at risk?’, ‘Prevention of spread - Respiratory and hand hygiene’, ‘Social mobility and Foreign Travel’.

The MEA explain that this information is intended to be used as general guidance on coronavirus infection in relation to ME/CFS.  If you require individual guidance or advice please consult your GP, who can take this information into consideration.
ME Association Guidance: Coronavirus (covid-19) Update | 09 March 2020.
 
The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Coronavirus Update 7 March
• Coronavirus and members of the 25% ME Group

Action for ME give explanations, and points out that with "the post-viral risk associated with any virus, and the rapid spread of Coronavirus (COVID-19), it is likely that we will see an increase in the number of people being diagnosed with M.E. in the longer term."  "and underlines the serious and urgent need to accelerate research that helps us understand the causes of M.E. and/or CFS."
Action for M.E. Update on Coronavirus and M.E. March 04, 2020.

The next Worcestershire NHS CFS/ME Service Recovery and Management group, on Wednesday 25 March, is being led by Sarah Sherwood, who will be talking about pain management. Sarah is an experienced Psychologist with the Pain Management team in Worcester.

The Recovery and Management group is run on a bimonthly basis, and is open to anybody who has previously received treatment from the NHS CFS/ME Service and has now been discharged.  It aims to provide people further support without having to be re-referred to the CFS/ME Service.

All sessions are run by staff members of the NHS CFS/ME Service and are held on the last Wednesday of every other month at Ability House, St John's Campus, Henwick Grove, Worcester, WR2 6AJ.
 
The Group’s 2020 Timetable -
 
March 25th 2020 - Pain management (Sarah Sherwood)
May 27th 2020 - Nutrition (Pam Clarke)
July 29th 2020 - Pilates (Sue Bratton)
September 23rd 2020 - The Alexander Technique (Rachel Kevern and Lesley)
November 25th 2020 - ‘Bring and share’ crafts and Christmas social

Please check the NHS CS/ME Service website for further information, and call the service to confirm your attendance beforehand.