Action for ME on the BBC

 

Action for ME is coming to the BBC!  We are delighted to share with you that we have been selected for a BBC Lifeline Appeal – a unique opportunity to increase understanding of ME across national TV. Since February we have been working with the BBC to develop a 9 minute video featuring the real-life stories of people with ME. These stories will be shown on BBC One on Sunday 26th April at 2:50pm. Keep an eye on our social media or BBC Lifeline webpage (links below) for further updates.  The video will be available to watch on the BBC website until Saturday 16 May and will feature the stories of three people living with ME in the UK. Through this TV appeal, we hope to reach an audience unfamiliar with the realities of living with ME, combat stigma and raise vital funds towards our work. All money raised during the appeal will go towards our work to improve the lives of anyone affected by ME – meeting their needs today through delivering information, support and healthcare, and changing the future by investing in research. Donations can be made from Monday 20th April. Watch & donate to help people like... Isla, who developed ME after Covid. It has been hard for Isla and her family, but after accessing our Support Services, Isla's mum said,  "It has been wonderful to be part of a community of people who truly understand what you are going through. Every person that I have interacted with at Action for ME has been very kind and empathetic.” Andrea, who has been living with severe ME for 33 years and has accessed our Information & Support Services. “Having had contact with Action for ME I felt supported for the first time in 30-odd years. I was listened to and believed.” Mark, who had mild ME for 30 years, then in 2016 it became moderate, then severe. Mark participated in our recent DecodeME genetic research project as, in his words, “This was a golden opportunity to help prove to the world that ME is NOT a psychological condition but a physical illness”. Please save the date, tune in to BBC One on Sunday 26th April if you can, and thank you so much for your support. Warmest wishes,  Sonya Chowdhury Chief Executive, Action for ME P.S. Please tell your friends and family too – the more people we can reach with this video, the more we can shine a light on the reality of ME.

Visit the BBC Lifeline Page

How to save your life, in one easy stroke

Hello

Do you have a smoke detector, do you test it once a month, by doing so, you will save your life, especially if you have a fire in your home.

Miriam 

This is a matter of life and death.

 Hello

From Morning Live, market places like Ebay, Amazon and Facebook are not regulated, so they can sell anything. One thing, you don't want to risk is a fire in your own home, just because something is cheap online.

If an electrical product does not have the letters EC on them, they are fake, and could burst into flames at any time. If you want electrical goods, go to Currys, Heelas, to name a couple.

Don't risk your life, over cheap good, that may be fake.

Miriam

Free tradesmen for you?

 Hello

I got this from Morning Live.

If you want a tradesman free or expenses paid only, there is an organisation called the Mens Shed, it is a group of retired men, who are happy to do free work or expenses paid, in the UK.

Many times, when people retire they don't know what to do with their life, with this, they can continue to work very part time, giving them a purpose, and saving your money at the same time.

Miriam

How to cut your energy bills

 Hello

I got this from watching Morning Live.

Use the eco settings on your devices, this saves energy each time you use it.

Turn your heating down a degree or so, and add more jumpers!

Don't overfill your kettle, as it uses a lot of energy to boil.

Don't over fill your fridge, and it takes up more energy because of lack of air space to circulate air.

Don't put things on standby.

I hope this helps.

Miriam

Sequence ME and Long Covid beginning.

 

As a valued supporter of our work, we are delighted to share the exciting news that we have secured funding for phase 1 of Sequence ME & Long Covid - the world’s largest long-read whole-genome study of any disease. The study will analyse the entire genetic code of 9,000 people with ME and 9,000 people with Long Covid. The initiative is designed to explore the causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing. Building directly on the success of the DecodeME study, this project aims to unlock deeper genetic insights that could accelerate the development of diagnostics and future life-changing treatments.  Find out more about Sequence ME & Long Covid The Schmidt Initiative for Long Covid and CODA (Complex Disorders Alliance) have provided $200,000 and $50,000 respectively towards the cost of the project’s first phase.  In this first phase we will: establish the project’s Management Group, Scientific Advisory Board, and build on the existing involvement of people with lived experience who have driven this study from the start develop the research criteria for Long Covid collect expressions of interest from 15,000 people with Long Covid We are delighted to be able to begin this ground-breaking research, however the total cost of the initiative is £20million, with phase one lasting two years and costing £388,138. The funding provided by project partners CODA and The Schmidt Initiative for Long Covid will enable us to recruit a full-time Partnerships and Business Development Manager to help drive this work, including seeking further funding and partnerships for the study. Once further funding is secured, we will immediately move into sample collection and analysis – aiming to sequence 9,000 Long Covid samples, as well as the 9,000 samples already collected through DecodeME.  We are now in a position to take donations towards the project from those who are able to. If you would like to support the project, you can make a donation here. We will share future updates on the study’s progress with you as soon as possible. Our ability to develop research partnerships such as these is only possible due to the support of people like you. Thank you for helping us create real change for people with ME and Long Covid, now and in the future. Warmest wishes, The Action for ME Team P.S. We still have some seats available at our Breakthrough ME fundraising dinner in London on Thursday 15th October 2026. For more information or to book your seat, please contact breakthrough@actionforme.org.uk

Donate to Sequence ME & Long Covid Miriam miriampotter40@gmail.com

Frozen are better than fresh!

 Hello

If you are like me and love fruit and vegetables, but a cannot afford, them fresh, then buying frozen is just if not better for you because they are frozen at source. 

Miriam