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Living with M.E.

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Services, support and contacts

Services, support and useful contacts

At a time with so much uncertainty for so many, we’ve compiled a list of useful links, ideas, articles and blogs that we hope are useful. If you have suggestions to add to this, please get in touch.

Please note that the external resources we signpost to are not necessarily endorsements or recommendations. This page was last updated at 10am on Monday 11 May 2020.

Crisis, Support and Advocacy Service

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 a 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 can:

  • share information about all aspects of living with M.E., including welfare benefits, social care, symptom management and accessing health services
  • offer emotional support, including coping in these particularly challenging times
  • source 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
  • advocate for your needs, explain processes in an accessible way, and support 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
  • offer peer-mentoring support (in Scotland only), to share experiences and insights into living with or caring for someone with M.E.

Please call 0117 927 9551 (9am to 5pm Monday to Friday) or email us to speak with a member of the team, or donate to help us reach even more people with M.E.

Please note that our team are not medically trained and are unable to offer specialist legal, employment or medical advice, though we can signpost to specialist organisations which can provide these services.

Action for M.E. team and resources

Working from home, having closed our Keynsham office, our staff team continue to provide the services and support you need. We are hugely grateful to our volunteers, who continue to support our work from home.

Calling our Supporting Members

Our staff team are calling all our Supporting Members to make sure you have the information and support you need. Calls are taking place on week days from Wednesday 15 April onwards.

Our website and social media

We are 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. Please do use social media to share your thoughts, ideas and concerns with us, and we will do all we can to support you and others with M.E.

Don't forget you can also join one of 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.

Booklets and factsheets

Given the Government measures asking everyone to stay at home, we are currently unable to send our resources by post; we will update here if this changes. You can always download our booklets and factsheets for free.

InterAction magazine

Our spring issue will be landing with our Supporting Members just after the Easter weekend, full of news and research updates, as well as information and support regarding the Coronavirus.

Funding our vital services

Now, more than ever, people with M.E. need support. With all our major fundraising events rightly postponed or cancelled to protect citizens and the NHS, we are facing an uncertain few months when it comes to donations. Our Board of Trustees and Chief Executive are working with the team to put plans in place to address this, so we can continue providing the vital support that makes a difference to so many. If you can help, please consider making a donation or joining us as a Supporting Member.

Local mutual aid groups and other community services

You can find local mutual aid groups all over the UK by visiting the Covid Mutual Aid UK website. These groups serve as informal networks that share information about Covid-19 and help people to deal with the situation as a community. The Covid Mutual Aid UK website contains a search engine and map function for you to find you closest mutual aid group. Freedom News has also created a page that provides links to these local mutual aid groups.

Another potentially useful resource for communities is Nextdoor.co.uk. This website can be used to stay up to date on events in your neighbourhood and has an online map with precise locations of people offering help.

There has been talk in the media of the army and volunteer community groups being utilised to deliver emergency food aid to vulnerable citizens. There is yet to be official confirmation of this but an article from The Guardian (Tuesday 24 March) suggests that this emergency aid could be implemented in the coming days.

Essential supplies

A user on our forum has pointed out that it may be helpful to order a repeat prescription if necessary, due to the burden that Covid-19 is placing on the health service. Your surgery may allow for repeat prescriptions to be organised over email or by fast telephone appointment systems so you can get questions straight to your doctor. Due to the variance in how different surgeries are run, we recommend you check your GP’s website to review any changes on procedure. This can also help you to check if your pharmacy can deliver prescriptions.

With basic supplies unavailable in supermarkets and online deliveries largely booked up, people are understandably concerned about being able to buy what they need. We are contacting supermarket CEOs and the UK Government to highlight that people with M.E. must be included in special provision for vulnerable groups.

Find out more, including links to smaller shops and our shopping support resource to show to supermarket staff on our support with shopping page.

Looking after mental well-being

Government guidance on looking after your mental health and well-being is available on the gov.uk website. The Mental Health Foundation has also published a guide on looking after your mental health during social isolation. Please note that these are guides for the general population and not all tips may be suitable for those affected by M.E., particularly those around exercise and sleep, and your need to carefully balance activity, energy and rest.

An Action for M.E. forum member has pointed out that you can currently access additional material on the Headspace meditation app for free. A lot of people find meditation apps like Headspace useful at times where they feel overwhelmed or just to remain calm day to day.

While it’s important to stay up to date with the news surrounding Covid-19, it’s also important to recognise that overload of stressful news regarding the virus can lead to anxiety for many. The Independent published an article (Monday 23 March) on how some people may be able to manage stress relating to the Coronavirus. This advice includes keeping a record of your worries; limiting your notifications on social media and news apps, instead choosing to update yourself at specific times of the day, and taking practical steps to reduce anxiety around your own vulnerability.

One of our former colleagues who now works at dementia charity Playlist for Life got in touch to highlight that they have a music journal resource, free for anyone to use, that helps you make a playlist that can evoke positive memories and boost your mood.

Samaritans are still offering their services by phone and email. The organisation does, however, note on their website that they're now unable to offer face-to-face support in their branches, and that current demand may delay response times to phone and email enquiries.

Children and young people

Young Minds shared a post on Thursday 12 March offering advice on what to do if you're feeling anxious about Covid-19. This advice covers finding someone to talk to, learning the facts about the virus, avoiding overexposure to the news, finding ways to keep calm, and dealing with self-isolation.

Anna Freud has produced guidance (published Tuesday 17 March) on supporting young people's mental health during periods of disruption. This guidance includes a section aimed at young people, a section aimed at parents and carers, and a section for schools/colleges.

We should note that, in the face of the current circumstances, some helplines have been forced to limit their availability. Childline has, for now, limited their contact hours to between 9am and midnight. We'll continue to check on the availability of services as the situation develops.

Mailing and deliveries

The Royal Mail remains open for business, but their website notes that there may be some delays. Royal Mail has a Coronavirus updates page that you can follow to stay up-to-date on their status, and an email sign-up for further alerts.

Employment and welfare benefits

The UK Government has published guidance on Statutory Sick Pay, Jobcentre appointments, health assessment appointments, changes to Universal Credit and Working Tax Credits, Local Housing Allowances and Housing Benefit.

Face to face assessments for all welfare benefits have been cancelled for three months (from Monday 16 March), and this may be extended. UK charity Scope advises:

  • If you have a face-to-face benefits assessment appointment, do not attend.
  • Your assessor will contact you to discuss what happens next. This could be an assessment over the telephone or through the post.
  • You will continue to receive your current rate of benefit.

Regional support

For users in Scotland, you can access national advice by visiting the Coronavirus Advice website and using the online chat or email contact option, or by calling 0808 800 9060. This national advice service can offer advice on employment, housing, personal finance, and cancellations and consumer rights.

The Scottish Government has also set up a helpline for vulnerable people, including those with M.E. Tel: 0800 111 4000. Callers will be automatically connected to their local authority who will support them to access the service they need, such as essential food and medication, links to local social work services for vulnerable children or adults, emotional support and contact with local volunteer groups.

For Welsh users, the gov.wales section on coronavirus provides guidance on managing the situation around Covid-19. This guidance includes information for businesses and employers; health advice; education and child care; health and social care professionals; housing, and travel.

For readers in Northern Ireland, the Public Health Agency has issued advice relating to Covid-19. This link provides information on reducing the spread of infection; steps to take if you think you might have Covid-19; advice for testing and travel advice. It also contains specific information for pregnant women, healthcare professionals, education settings, and NI businesses and workers.

Fry Law resources

As originally shared with us by Disability Rights UK, Equality and human rights champion Fry Law has a raft of free template letters on their website which people may wish to use during the Coronavirus crisis, including complaint letters to supermarkets, designed to provide priority access for disabled people.

Fry Law has also created an online video forum where people can discuss and advise on the law online. The forum will meet from 6-7pm on Tuesdays and Fridays. Cathy Casserley and her team at Cloisters Chambers will be on hand, together with BSL English Interpreters Love Language, to answer questions and enter into conversation. There will be different guests for each session, to reflect different themes.

To register in advance for this webinar, you can follow the link to Fry Law on Zoom. If you'd prefer to ask questions in advance, you can also tweet questions by including #DRAquestion in your tweet.

New to staying at home

M.E. bloggers Super-pooped and Bimblings have shared advice for people who are new to staying indoors all the time, and perhaps aren’t sure what to do with themselves yet.

People with M.E. shared tips on our Facebook page and Instagram about coping with isolation: please add to the comments there if you experience to share.

Don't forget you can also join one of 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.