Action for M.E.

🚨 Care and Support Plan template 🚨

Working in collaboration with people living with ME, Dr Pete Gladwell, Clinical Specialist Physiotherapist and North Bristol NHS Trust’s Bristol ME Service Lead, we've helped to develop a free to download Care and Support Plan template.

The 2021 NICE guideline for ME/CFS recommends having a personalised Care and Support Plan to help manage symptoms, but we know that people with ME often face barriers to accessing this sort of support.

The guideline makes in clear (section 1.5.3) that health professionals should: “recognise that the person with ME/CFS is in charge of the aims of their care and support plan.”

The plan can be developed with support from a carer, family member, friend, or other professional and is intended to be completed and edited in whatever way suits you best.

Find out more and download the template using the link below 👇

https://www.actionforme.org.uk/news/care-and-support-plan-template-free-to-download/

Our Information and Support Service team are here to help with any questions you may have about using the template, symptom management, or any other aspect of living with ME, on 0117 927 9551 or [email protected].

Do you have a favourite piece of writing or poem? 📚

We know that many people in the ME community are keen writers and readers! For International Literacy Day on 8th September, we would like to share a selection of your favourite words, either work that you’ve written or pieces that you have particularly enjoyed.

Leave the name of the piece, author, and your favourite quote in the comments below 👇

Thank you Good Morning Britain for helping to raise vital awareness and understanding of Maeve's Inquest, and ME more widely 🙏

Good Morning Britain - ITVX BAFTA-nominated breakfast show covering the latest news, sport & weather

Bringing people with ME together 🤝

Our Pen Pal Service can help reduce isolation amongst young people by putting them in touch with someone of a similar age with ME. We ask about hobbies and make matches between those with similar interests. Peer support can really help with loneliness that can come from having ME, and this year we’ve matched 40 children and young people to pen pals through our service.

Please consider donating so that we can continue to help those affected by ME.
https://www.actionforme.org.uk/support-us/donate/

Today is International Youth Day 🌍

With more young people online than any other age group, this year’s United Nations theme is all about digitalization.

We know that living with ME can be hard especially when you’re young, and so we have an online community just for young people. We run online monthly workshops and a forum where you can connect with other young people who have ME, make new friends and talk about life with ME 💻

If you’re in need of further support, we also offer a free Young People’s Counselling Service.

Find out more: https://www.actionforme.org.uk/18-and-under/how-we-can-help/support-for-18-and-under/

** Trigger warning: upsetting content, death **

The Guardian - “’I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions”

The article covers the Inquest, the Coroner's conclusions, and the hope that Maeve's story "will come to be seen as a landmark case that will lead to change in the way people with ME are treated and perceived."

Our CEO, Sonya, was also asked to contribute to the article:

“It is clear that the NHS has not yet developed the framework to deliver effective support to people with severe and very severe ME.

There is no clear pathway for care and this is compounded by a lack of understanding that some healthcare professionals have and, as we have seen in situations like Maeve’s, stigma. There is no excuse for this.”

Read the full article 👇

https://www.theguardian.com/society/article/2024/aug/10/me-patients-maeve-boothby-o-neill-inquest

** Trigger warning - upsetting content, death **

Today marked the conclusion into the tragic death of Maeve Boothby O'Neill, who had severe ME, in October 2021.

The coroner provided a very detailed overview of all the evidence and chronology of events from Maeve’s first diagnosis of ME to involvement from her GPs, hospital admissions and the last few days of Maeve’s life.

The recorded cause of Maeve’s death will be one of natural causes, specifically malnutrition which was caused by severe Myalgic Encephalomyelitis. It will be stated that Maeve died at home after three admissions to hospital where they were unable to treat her Myalgic Encephalomyelitis. Repeatedly through her reading of findings, the coroner outlined her hope that the inquest will lead to improved care and support for people with ME in the future.

Our Chief Executive, Sonya, has released the following statement:

"We heard that Maeve’s GP, Dr Shenton, worked tirelessly to try and secure the support Maeve needed and, sadly, this has now impacted on her own health. While there is some excellent professional practice more widely, we must do more to expand and embed this. It was clear today that there is an urgent need to accelerate research and to redress the lack of knowledge and understanding that exists so that doctors and others can better support people with ME. We hope that the insight and learning from this inquest is not lost and that Maeve’s legacy can live on through changes that are brought for people with ME."

You can read more on Action for M.E.'s website here:

https://www.actionforme.org.uk/news/maeve-boothby-oneill-inquest-conclusion/

To mark , a new ‘question of the day’ resource has been launched on the Learna website to compliment Dr Nina Muirhead’s existing CPD-accredited module on diagnosing and managing ME, accompanied by our series of ‘Learn about ME’ podcasts.

It features five multiple-choice questions about a young person with severe ME, aimed to test and improve healthcare professionals’ clinical knowledge of severe ME.

✅ Healthcare professionals will receive a 0.5-hour CPD certificate on successful completion.

Read more 👇

https://www.actionforme.org.uk/news/new-online-learning-for-gps-on-severe-me

‘Living with ME’, by Debs Buchan.

Taken on the eve of , Debs kindly sent us in this powerful photo to share.

Debs said:

“I took [this photo] on the eve of Severe ME Day. I have called it ‘Living with ME’. I am a member of Action for M.E. and after two decades of living with moderate ME/CFS, I am often mindful of how those with severe ME are living.”

Thank you so much for sharing this with us, Debs.

We echo the thanks from Prof Chris Ponting and the team at Decode ME Study to the thousands of people with who took part in 🙏

Thousands of people with have taken part in DecodeME. Thanks to them we now know that being female, being older and having ME for over 10 years all make it more likely that someone is more severely affected. As we now undertake genetic analyses, we hope to find out more about what causes Severe ME, and direct future research toward finding treatments and a cure for this devastating illness.
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Follow the hashtag to learn more about what's going on across the world on this important day.

Today (8th August) marks .

In this post, the World ME Alliance highlights the experiences and mistreatment of people with severe ME in hospital from across the globe.

Read the full article 👇

https://worldmealliance.org/2024/08/hospital-mistreatment-of-severe-me-patients-globally-severemeday-2024/

Safer hospital care for people with severe ME must be prioritised worldwide.

Hospital Mistreatment of Severe ME Patients Globally - #SevereMEDay 2024 - World ME Alliance This Severe ME Day, 8th August, the World ME Alliance is highlighting the experiences of people with Severe ME in hospitals across the globe. People with ME everywhere experience stigma, denial of evidence-based science, disdain and dismissal of symptoms by healthcare providers. Yet for those with S...

🚨 In a recent post, Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public and Health Prevention, confirmed Labour's commitment to publishing the full Delivery Plan on ME/CFS:

"It isn’t being delayed again… I’ve asked my officials to publish the plan, which they will now do. The last government sadly stalled the process. Officials are now putting everything together and I should have something to see very soon pending publication."

Read more 👇

https://www.actionforme.org.uk/news/labour-commits-to-publish-full-delivery-plan-on-me/cfs/

You can now register for our next Breaking Isolation Workshop!

Come and join us for a fun and informative self-advocacy workshop that focuses on empowerment and knowledge sharing to support you with having a voice in your education.

When? 10th September at 4.00 - 5.30pm

Who can take part? Young people with ME aged 14-18 years old.

Where? Online, on Zoom.

What’s in store? In this session we will work through how to get your voice heard, what could be better at school/college to meet your needs and learn about IHCPs.

The session will be hosted by Keely, our Family Support Officer, and a peer facilitator, or adult co-facilitator from Action for M.E. A 10 minute break will be given halfway through.

Interested? Sign up to the workshop on Eventbrite using the link below and you’ll be sent all the details you need for the workshop.

🔗 https://ow.ly/typv50SsGHC

We can’t wait to see you there 🙂

🎥 Available to watch: ME/CFS research workshops

Hundreds of people living with ME/CFS, researchers and clinicians recently came together in a series of online workshops designed to stimulate clinical research in ME/CFS.

We were delighted to support by hosting these workshops and sharing the recordings on our Youtube channel.

The fourth workshop, ‘ME/CFS research and underserved groups’, looked at:
• the stigmas surrounding chronic illnesses
• improving diagnosis and health care provision
• and widening recruitment and participation in clinical trials.

It focused specifically on people with ME/CFS who are already minoritised or socially disadvantaged in society, including those who are severely affected.

Watch the full recording on our YouTube channel 👇

https://youtu.be/EZcuRW5YEvI

The workshops were organised by Monica Bolton, a Patient and Public Involvement member of the Research Working Group tasked to input into the Government’s ME/CFS Delivery Plan, with support from Alan Mould.

Decode ME Study have shared an update on tomorrow's planned BBC Breakfast appearance, which has now been postponed.

An updated date/time will be shared in due course.

My Neuro Survey is completely anonymous and secure.

If you or your child has a neurological condition, or you care for someone who does, please share your experiences and fill out My Neuro Survey: https://bit.ly/3A1kpzi

Thursday 08 August marks Severe ME Day 2024.

is dedicated to amplifying the voices of people with severe and very severe Myalgic Encephalomyelitis and honouring those who have sadly lost their lives to this debilitating condition.

Our last Big Survey found that almost 80% of people with severe ME needed part- or full-time care and sadly, most people with severe ME still report poor experiences in hospital settings.

This must change.

Please join us in supporting the World ME Alliance and other organisations around the world in calling for safer hospital care for people with severe and very severe ME.

Read more 👇

https://worldmealliance.org/2024/08/safer-hospital-care-for-severe-me-severemeday-2024/

This , we're celebrating our wonderful Edinburgh Marathon festival team 🎉

Despite the rain, an amazing team of 6 runners took part in the Edinburgh Marathon festival back in May, raising over £5,000 between them!

Most of our runners have family members or friends with ME, we can’t thank them enough for their fundraising - which helps us provide our vital services - but also for raising awareness and showing their support for people with ME.

Find out more about fundraising for us using the link below 👇

https://ow.ly/oOpF50SPPTZ

We're joining the World ME Alliance & other organisations across the globe in calling for safer hospital care this .

The World ME Alliance has produced an article covering the current challenges in hospital settings and how safer hospital care for patients with Severe ME can achieved, alongside some alternatives to hospital admission and additional resources.

"PEM is an acute worsening of symptoms after even minimal physical, mental, or emotional exertion. For Severe ME patients, even sensory overload (light, sound, smell, touch) can induce painful and disabling PEM that may last days, weeks, or permanently. Very Severe patients may experience periods of paralysis and are completely reliant on caregivers."

Read the full article using the link below👇

🔗 https://worldmealliance.org/2024/08/safer-hospital-care-for-severe-me-severemeday-2024/

Safer Hospital Care for Severe ME - #SevereMEDay 2024 - World ME Alliance Severe ME Day, held on the 8th of August each year, is a significant occasion for the World ME Alliance and the global community affected by Myalgic Encephalomyelitis (ME). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentl...

**Trigger warning – contains sensitive content**

🚨 BBC Scotland The Nine continued the coverage of Edina and included a live interview with our CEO, Sonya Chowdhury.

Visit our website to watch the full interview: https://ow.ly/6M9K50SMYMN

We have also created a separate page on our website to provide media updates of Edina’s story: https://ow.ly/sEbe50SMYMM

Today is International Day of Friendship 🤝

Started in 2011 by the United Nations General Assembly, the International Day of Friendship is all about celebrating your friends and showing them how much you care.

Without friends, the world would be more challenging.

If you have a friend who is living with ME, CFS or long Covid, there are many ways you can help support them and be there for them.

🔗 Visit our website for more information about ME and how you can support someone with ME: https://ow.ly/Q2K750SwTMB

BBC Scotland The Nine continued the coverage of Edina and included a live interview with our CEO, Sonya.

**TRIGGER WARNING - contains sensitive content**
You can watch the piece here https://tinyurl.com/2vfteebh

We acknowledgs the complex ethical considerations surrounding assisted dying and respect the diverse perspectives both within the community and more widely. However, Edina and her family wanted her story shared and we felt it important to respect that and also take the opportunity to raise much-needed awareness about ME and its impact on people with it and their families.

Our priority remains our commitment to supporting individuals with M.E., pushing for more research funding and the improvement of care for people with M.E. We continue to provide information and support, advocacy, services for children and young people and healthcare services, including counselling.

If you or anyone you needs support, please contact us on 0117 927 9551 or [email protected]

🚨 Our response to the Department for Work and Pensions Green Paper on Health and Disability Benefits.

After working with and receiving valuable feedback from the community, Action for M.E. have submitted a response to the consultation on the Department for Work and Pensions Green Paper on disability benefits.

Read our response on our website: https://ow.ly/c9gE50SMUZw

We would like to thank everyone who took the time and energy to contribute to the response.

Hear more (16.44 - 49) https://bbc.co.uk/sounds/play/live:bbc_radio_scotland_fm

Sonya speaks live to Martin this afternoon. The piece includes a report from Lisa Summer and a clip from her interview with Prof Chris Ponting about the Decode ME Study that we partner on.

TRIGGER WARNING - the clip contains sensitive content including an interview with Edina and discusses assisted dying

Our CEO, Sonya, will be talking to BBC Radio Scotland Drivetime at 16.45 today and The News at Nine (we expect it to be around 9.50pm).

We will share links tomorrow so you can listen back should you wish to

DecodeME Investigator, Chris Ponting, talks to BBC Radio Scotland about DecodeME, what is ME? and the need for funding around ME research. Go to 24:52 https://www.bbc.co.uk/sounds/play/m0021h8s to hear his interview.

*TRIGGER WARNING*

Our CEO and our Decode ME Study colleague, Prof Chris Ponting, spoke to BBC Scotland who are telling Edina's story.

We know this is an upsetting story and we did consider whether to share it or not but, on balance, we felt it important to do so.

Please remember that our free and confidential Info & Support Services are here, if needed and can be contacted on 0117 927 9551 or [email protected]. They can also engage via text if that's better than phone or email. We also have trained counsellors working as part of Action for M.E. Healthcare Services and can offer bursaries to help support access as this is a paid for service.

There is no help – final message of woman with ME Edina Slayter-Engelsman returned to The Netherlands to end the “unbearable suffering” of living with ME.

We know that living with ME can be hard, especially when you’re young.

ME can make it difficult for young people to spend time their friends or family and can prevent them from doing the things they enjoy.

Our Young People’s Community is open to anyone with ME aged up to and including 18 and gives your child the chance to connect to other people their age, who understand what it’s like to live with ME.

By joining our Community, your child will receive:

✅ access to our fun, friendly online forum
✅ our monthly e-magazine, Cheers, written by and for our community
✅ a birthday card every year, written by one of our lovely volunteers.

Your child will also be sent information about how they can use our Pen Pal Service and Buddy Writer service for our Severely Affected Members (SAMs).

🔗 Visit our website to find out more about how our Young People’s community can support your child: https://www.actionforme.org.uk/18-and-under/how-we-can-help/join-our-community/

If your child has M.E. you may be feeling upset, worried, stressed, or even angry, and it's not always easy to know how to help them.

Counselling is a safe space, based on trust and understanding.

Our counsellors understand the impact M.E. can have on young people, their friends, and other family members.

They’re here to listen to your child and ensure they receive the support they need.

Want to find out more about our free Young People’s Counselling Service can support your child❓

🔗 Visit our website to find out more: https://ow.ly/rO7C50QLSMx