United Kingdom: Action for ME (AfME) news

From Facebook

Recording now available!

We’re pleased to announce that the recording for the ‘You’re not imagining it: Long Covid, Me and invisible illnesses in South Asian communities’ online event is now available!

This event was held in July, supported by Action for ME, and organised by South Asian Heritage Trust. It was hosted by BBC radio broadcaster Asma Yonnus with expert clinicians Dr Binita Kane and Dr Sanjay Gupta.

Watch the recording now



#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #LongCovid
 
Trish said:
Has anyone watched this?
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It looks like they did a good job with the video description:

​
Invisible illnesses can be some of the hardest conditions to live with—not only because of the symptoms, but because so many people struggle to be believed.​
In this South Asian Heritage Month webinar, host Asma Younus is joined by leading Long COVID specialists *Dr Binita Kane* and *Dr Sanjay Gupta* to explore Long COVID, ME/CFS, POTS and other invisible illnesses, with a particular focus on the experiences of South Asian communities.Together they discuss:​
  • What Long COVID actually is—and why it's more than one condition.
  • Why many patients receive normal test results despite experiencing debilitating symptoms.
  • The health inequalities affecting South Asian communities.
  • The importance of listening to patients and recognising invisible illness.
  • Practical advice on diagnosis, symptom management and where to seek support.
  • The latest thinking on treatment, recovery and holistic care.

Whether you're living with persistent symptoms, supporting a loved one, or simply want to better understand these conditions, this conversation offers expert insight, practical guidance and, above all, reassurance that your experiences matter.​
Nobody should have to fight to be believed.​
​

 
From Facebook

The recording of Action for ME’s Annual General Meeting (AGM) 2026 is now available!

Our AGM took place online on Tuesday 22 September and was led by our Chief Executive, Sonya Chowdhury.

Watch the recording on our YouTube channel to hear about our activities and achievements over the past year, and learn more about our priorities for the future



Our 2025-2026 Annual Report is also now available on our website

Action for ME Annual Report 2025-2026

www.actionforme.org.uk www.actionforme.org.uk

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
 
From Facebook

The cost of neglecting ME can no longer be ignored.

Join us for a webinar introducing our new report, The Cost of Neglect: Evidence from the 2026 Big Survey.

Nearly 5,500 children and adults shared their experiences. The findings show how people are being denied essential care, independence and dignity, with those most severely affected receiving the least support.

Hear key findings from Dr Katharine Cheston of Durham University and how our Chief Executive, Sonya Chowdhury, will use this evidence to push for change. There will also be time for your questions and views on what comes next.

Thursday 26 November
3pm UK time
Online via Zoom

Register: https://us02web.zoom.us/webinar/register/WN_EqV8vaCHSJeO-1gsiME8ww

A recording will be available afterwards if you can’t join live.
 
From Facebook

The evidence is growing. Now we need action.

On 25 November, Action for ME will launch The Cost of Neglect, our 2026 Big Survey report, in Parliament.

Drawing on the experiences of more than 5,000 people, the report highlights the challenges people with ME face in accessing care and support.

We need MPs to hear these findings and understand the urgent need for change.

You can help by asking your MP to attend.

✉️ We've created a simple online tool that finds your MP and prepares a personalised letter for you to send.

It only takes a few minutes. Add your details, include a personal message if you wish, and we'll email you the completed letter with instructions for sending it.

Get started

www.actionforme.org.uk

Help us bring the Big Survey to Parliament

On Wednesday 25 November, Action for ME will launch The Cost of Neglect: Evidence from the 2026 Big Survey at an event in Parliament,...
www.actionforme.org.uk www.actionforme.org.uk

#pwME #MECFS #MEAwareness
 
Dolphin said:
From Facebook

The evidence is growing. Now we need action.

On 25 November, Action for ME will launch The Cost of Neglect, our 2026 Big Survey report, in Parliament.

Drawing on the experiences of more than 5,000 people, the report highlights the challenges people with ME face in accessing care and support.

We need MPs to hear these findings and understand the urgent need for change.

You can help by asking your MP to attend.

✉️ We've created a simple online tool that finds your MP and prepares a personalised letter for you to send.

It only takes a few minutes. Add your details, include a personal message if you wish, and we'll email you the completed letter with instructions for sending it.

Get started

www.actionforme.org.uk

Help us bring the Big Survey to Parliament

On Wednesday 25 November, Action for ME will launch The Cost of Neglect: Evidence from the 2026 Big Survey at an event in Parliament,...
www.actionforme.org.uk www.actionforme.org.uk

#pwME #MECFS #MEAwareness
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