Action for ME

20/10/2026

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20/10/2026

📢 Support for parents and carers of children with diagnosed or suspected ME.

If your child’s school is struggling to understand ME and the impact it has on your child, or if you’d like to know more about Individual Healthcare Plan (IHCPs), our Family Support service is here to help.

We can help identify and prioritise key issues, identify your options and next steps and provide you with information, guidance and resources to support your child.

We offer two support options to families:

· Accessing education in a needs-appropriate way for your child

· Working with professionals such as your child’s GP or social services.

One service user shared:

“It has been immensely helpful during a really stressful time. A lifeline when you feel like you’re drowning.”

You can find out more about our Family Support service, including how to access it, on our website 👇

https://www.actionforme.org.uk/supporting-you/our-free-support-services/family-support/

19/10/2026

📢 Reminder: register for the fourth PRIME webinar, exploring neurology in ME/CFS!

🗓️ Date: Wednesday 28th October 2026

🕑 Time: 2pm-5pm GMT

📍 Location: online via Zoom

Join leading international researchers for an online workshop exploring neurology in ME/CFS.

Register and read more on our website 👇

https://www.actionforme.org.uk/register-for-the-4th-prime-webinar-the-neurology-of-me-cfs/

17/10/2026

Did you know that we offer support to schools and educators who are supporting pupils with ME/CFS?

Our Guide for Educators resource contains everything schools and teachers need to know about how to support a child or young person with ME/CFS 👇

https://www.actionforme.org.uk/resource/me-a-guide-for-educators/

Our Family Services Coordinator, Keely, also offers 30-minute Q&A sessions for educators to answer any questions they have about supporting pupils with ME/CFS. Educators can book here 👇

https://doodle.com/bp/keelyamor/30-minute-qa-session-for-educators

If you are a parent or carer of a child or young person with ME, share this with their school and teacher!

16/10/2026

The inaugural PRIME International Symposium brought together researchers, clinicians, industry representatives, charities and people with lived experience for two days of discussion, collaboration and shared learning focused on the future of ME research.

Taking place in Edinburgh and online, the symposium explored how partnerships across disciplines and with the ME community can help accelerate progress towards better understanding, diagnosis and treatment.

Key moments included the launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium, updates from the PRIME Research Involvement Hub, preliminary findings from the Action for ME Big Survey, early career researcher flash talks, and discussions on future research priorities.

As conversations continue beyond the event, PRIME will keep working to strengthen collaboration and champion research shaped by lived experience.

Read our full roundup: https://www.actionforme.org.uk/global-experts-gather-to-accelerate-progress-in-me-research-at-the-prime-symposium/

Researchers, clinicians, industry representatives, charities and people with lived experience came together at the inaugural PRIME International Symposium on 28 and 29...

14/10/2026

💻 Join our ME Friends Online forum!

Open to adults in the UK living with ME, our forum offers peer support, friendly discussions and an opportunity to connect with others who truly understand what it’s like to live with ME.

Recent topics include:

· Wildlife

· Sleep reversal and other symptoms

· Books and articles about ME

· TV and film recommendations

· Parenting young children with ME

Sign up to our forum here! Our forum is optimised to work across mobiles, tablets, laptops and PCs 👇

https://www.actionforme.org.uk/sign-up/

*All forum users are asked to abide by our Terms of Use, which have been developed to ensure the forum is a safe and supportive space for people affected by ME.*

13/10/2026

📢 Are you a parent or carer of a child with ME?

❔ Does your child’s school struggle to understand ME and the impact it has on your child?

❔ Do you want to know more about Individual Healthcare Plans (IHCPs) and how to work with your child’s school to implement one?

❔ Would you like your child’s GP to learn more about ME?

Our Family Support service is here to help. One service user shared:

“It has been immensely helpful during a really stressful time. A lifeline when you feel like you’re drowning.”

We have two support options available:

· Accessing education in a needs-appropriate way for your child.

· Working with professionals such as your child’s GP or social services.

More information about our Family Support service, including how to access it, can be found on our website 👇

https://www.actionforme.org.uk/supporting-you/our-free-support-services/family-support/

09/10/2026

❔ Did you know that we have a wide range of useful resources available to read and download for FREE on our website?

Our resources contain lots of helpful information, advice and signposting on topics including but not limited to:

• Getting reasonable adjustments at work

• Work Capability Assessment, Adult Disability Payment and Personal Independence Payment

• Living with ME, including what ME is, managing symptoms and accessing health services

• Social care services

• Explaining ME/CFS for young people, including information for siblings

We also have resources available for healthcare professionals, employers and schools!

Visit our website to read, download and share our resources 👇

https://www.actionforme.org.uk/resources/

08/10/2026

📢 The British Psychological Society Good Practice Guidelines for Psychologists Working with People with ME/CFS: An update

We are continuing to work with the British Psychological Society and the ME Association to produce Good Practice Guidelines for Psychologists Working with People with ME/CFS, informed by people living with ME/CFS.

Our volunteer on this project, Katherine Langford says:

“We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know to support both the guidelines and a planned research paper. Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods."

You can read more about this project, including download the latest newsletter update, on our website 👇

https://www.actionforme.org.uk/the-british-psychological-society-good-practice-guidelines-an-update/

07/10/2026

🏠 Take part in new research: Keeping ME Warm

How does using energy at home affect your health and wellbeing?

We’re working with National Energy Action on new research exploring experiences of home energy use, comfort and affordability among people living with ME/CFS or Long Covid.

You can take part by completing a questionnaire, taking part in an interview and/or keeping a diary. Reasonable adjustments are available, and your experiences will help shape future advice and support.

📅 The questionnaire is open until 31 December 2026.

Find out more and take part:
actionforme.org.uk/keeping-me-warm-take-part-in-new-research/ https://www.actionforme.org.uk/keeping-me-warm-take-part-in-new-research/?utm_source=chatgpt.com