Action for ME

Action for ME Providing support & holistic healthcare services to people of all ages affected by ME. Charity number: 1036419 / SC040452

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šŸ“¢ Sharing for info - have your sayThe Prime Minister has asked Baroness Casey of Blackstock to chair an independent Comm...
04/06/2026

šŸ“¢ Sharing for info - have your say

The Prime Minister has asked Baroness Casey of Blackstock to chair an independent Commission on Adult Social Care, which will recommend how to reform the adult social care system.

They want to hear from anyone who uses care and support, carers, organisations, and anyone with views on how the system works now and how it could be improved.

For many people with ME, especially those who are severely or very severely affected, access to appropriate care and support can have a huge impact on daily life, safety, dignity and quality of life.

We know that engaging with consultations can be difficult due to the impact of symptoms and limited energy. Where people are able to engage, sharing lived experiences can help highlight the realities of navigating social care with ME.

We are continuing to develop our organisational response and we also encourage you, where able to, to submit your experiences to the Commission - the deadline is the end of June.

Find out more and take part here: https://caseycommission.co.uk/

Join our third PRIME workshop to learn more about post-exertional malaise (PEM).PEM is the hallmark symptom of ME, where...
04/06/2026

Join our third PRIME workshop to learn more about post-exertional malaise (PEM).

PEM is the hallmark symptom of ME, where physical or mental activity can cause a delayed worsening of symptoms, often hours or days later. This can include debilitating fatigue, pain, brain fog, and flu-like symptoms.

Unlike normal tiredness, PEM isnā€™t relieved by rest, and recovery can take days, weeks or longer.
This workshop will ask various questions about PEM, including what it is, what causes it, and how can it best be explained and defined?

šŸ—“ļø Date: Thursday, 30 July
šŸ•‘Time: 2pm-5pm, GMT
šŸ“Location: online via Zoom

Expert speakers include Maree Candish (Science for ME), Professor Mark Faghy (University of Loughborough), Marjon Wormgoor (independent researcher), Professor Todd Davenport (University of the Pacific) and Professor Maureen Hanson (Cornell University).

Register here to attend šŸ‘‡
https://us02web.zoom.us/webinar/register/WN_l39rWIMYTlqqTF7nXixo1Q #/registration

šŸ“¢ The recording from the second PRIME research webinar is now available on our YouTube channel!PRIME is an initiative de...
04/06/2026

šŸ“¢ The recording from the second PRIME research webinar is now available on our YouTube channel!

PRIME is an initiative designed to strengthen and accelerate research into ME, led by the University of Edinburgh in partnership with Action for ME. The second webinar brought together leading researchers to explore the similarities and differences between Long Covid and ME.

šŸ”— Watch the recording here: https://www.youtube.com/watch?v=NMlMj7ordK8

Weā€™re pleased to announce that Stuart Andrew for Daventry MP, Shadow Secretary of State for Health and Social Care, has ...
03/06/2026

Weā€™re pleased to announce that Stuart Andrew for Daventry MP, Shadow Secretary of State for Health and Social Care, has become a Parliamentary Champion for Action for ME.

As Shadow Secretary of State for Health and Social Care, Stuart has said he wants to work constructively to support progress for people with ME, and help hold decision-makers to account on the implementation of commitments made in the Governmentā€™s Final Delivery Plan for ME/CFS.

Speaking on the announcement, Stuart said:

"I am delighted to become a Parliamentary Champion for Action for ME and to support the charityā€™s work in improving the lives of people living with this often misunderstood illness.
While the announcement of the final delivery plan for ME/CFS is a positive step, delays in its implementation risk adding to the continued challenges for people with ME, particularly those with severe symptoms.
I look forward to working with Action for ME and colleagues to ensure people with ME receive the care and understanding they deserve and that commitments translate into meaningful improvements."

We would like to thank Stuart for his dedication to supporting people with ME and we look forward to working with him.

Read more about our Parliamentary Champions network: https://www.actionforme.org.uk/campaign/parliamentary-champions-network/

By leaving a gift to Action for ME in your Will, you can make a big difference to the lives of people with ME.Your gift ...
03/06/2026

By leaving a gift to Action for ME in your Will, you can make a big difference to the lives of people with ME.

Your gift ā€“ however large or small ā€“ could help fund new biomedical research projects to unlock the causes of ME or help us provide crucial information and support services to people affected by ME, their families and carers.

Making a Will isnā€™t complicated, and itā€™s an important way of ensuring that your loved ones are taken care of.

The next time that you make or update your Will, please consider the difference you can make by remembering Action for MEšŸ§”

For more information, visit our website šŸ‘‡

https://www.actionforme.org.uk/support-us/other-ways-to-support-us/leaving-a-gift-in-your-will/

You can also find out more about making a Will on the Citizens Advice website šŸ‘‡

https://www.citizensadvice.org.uk/family/death-and-wills/wills/

šŸŽ™ļøAction for ME discusses ME research on BBC Radio GloucestershireClare Ogden, Head of Support Services, highlighted thi...
03/06/2026

šŸŽ™ļøAction for ME discusses ME research on BBC Radio Gloucestershire

Clare Ogden, Head of Support Services, highlighted this morning how the Sequence ME & Long Covid research project presents a ā€˜once in a generation opportunity that we hope will transform our understanding of these illnessesā€™ but there is a huge need for much more research funding for ME.

The accompanying BBC article highlights the impact ME has on peopleā€™s lives, the misunderstanding many people with ME continue to face, and how research funding is just ā€˜drop in the oceanā€™ compared to whatā€™s really needed.

Read the BBC article here: https://www.bbc.co.uk/news/articles/c4g91y92j84o
Listen back via BBC Radio Gloucestershire here (2 hours, 6 minutes in): https://www.bbc.co.uk/sounds/play/m002wv09

You can now register for our next Breaking Isolation Workshop! This free lavender paper flower making workshop is for yo...
03/06/2026

You can now register for our next Breaking Isolation Workshop!

This free lavender paper flower making workshop is for young people aged 14-18 and is a relaxed and fun space to connect with other young people with ME.

šŸ“… When? Thursday 18 June, 3:30-5pm
šŸ’» Where? Online via Zoom

The workshop will be hosted by Keely, our Family Services Coordinator, and Grace who runs flower making workshops. There will be a 10-minute break halfway through.

Find out more and register here: https://www.eventbrite.com/e/breaking-isolation-workshop-flower-making-ages-14-18-tickets-1990467194962?aff=oddtdtcreator

This week is , and we are celebrating the incredible contribution of our wonderful volunteers ā­Our volunteers support u...
03/06/2026

This week is , and we are celebrating the incredible contribution of our wonderful volunteers ā­

Our volunteers support us in all aspects of our work improving the lives of people affected by ME ā€“ we couldnā€™t do our work without them!

Alice is one of our fantastic volunteers and is a qualified mindfulness meditation instructor. She has been volunteering with us for two years and runs online monthly Mindfulness sessions for people with ME and their carers, providing them the opportunity to be part of a community that understands ME.

We are so grateful to Alice for her commitment and dedication! šŸ§”

Interested in volunteering for Action for ME? Volunteering can be incredibly rewarding, and youā€™ll be contributing to our work to create positive change for people with ME.

Visit our website, or email [email protected], to find out more šŸ‘‡

https://www.actionforme.org.uk/support-us/other-ways-to-support-us/volunteer/

Weā€™re pleased to see ME highlighted by the BBC this week, including coverage on BBC Morning Live and a news article sign...
02/06/2026

Weā€™re pleased to see ME highlighted by the BBC this week, including coverage on BBC Morning Live and a news article signposting to support for people with ME.

The article explores what ME is, its symptoms, how it is diagnosed, and where people can find help and information, including through Action for ME.

Itā€™s encouraging to see ME being covered by mainstream media and reaching wider audiences.

Read the article here: https://www.bbc.co.uk/articles/c3d2j8jd0nno

If you are a parent or carer of a young person with ME who is starting secondary school in September, it's important to ...
02/06/2026

If you are a parent or carer of a young person with ME who is starting secondary school in September, it's important to make sure the school has support in place.

Your childā€™s primary and secondary schools must recognise that they will need ongoing support and that a support place is prepared in advance of them starting secondary school.

To help get the right support for your child, speak to the secondary school that they will be attending before the start of term. You can discuss getting a plan in place and find out who key pastoral staff are.

You can also find more information on our website šŸ‘‡

https://www.actionforme.org.uk/18-and-under/going-to-school/

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