Thank you kathryn samson Channel 4 News for highlighting our Action for M.E. Chris Ponting 💙 DecodeME the ME/CFS Study and raising much-needed awareness of #MyalgicEncephalomyelitis

World's largest genetic study of ME offers hope to sufferers. Chris Ponting on Channel 4 News on how #MEcfs is 20 years behind other diseases because society doesn’t take it seriously. DecodeME the ME/CFS Study trying to change this w PwME. youtu.be/3bPNjc4dRRs?si…

Channel 4 News speaks to Chris Ponting 💙
& other members of the DecodeME the ME/CFS Study
about the study's importance & the lack of #MEResearch

The piece also features Jo, a study participant, who shares the difficulties of living with ME

We'll share links to the full segment when available

It’s a good night for #MyalgicEncephalomyelitis coverage with ITV News and Channel 4 News helping raise much-needed understanding of the impact of ME, #LongCovid Action for M.E. DecodeME the ME/CFS Study

2/6 “It is quite shocking that we don’t have specific services, not least because of the impact of those that have developed Long Covid and now have ME-like symptoms”

1/6 In tonight’s segment on ITV Granada Reports our CEO, Sonya Chowdhury, speaks to Joshua Stokes about the lack of specialist services for ME, particularly in the North West

Read the article & watch the interviews here: ow.ly/oyYw50R8FUY

Our Co-Chair Sonya Chowdhury, and Head of Advocacy and Comms, Sian L, today joined a panel discussion on patient advocacy in #MECFS and #LongCovid , highlighting the inequities and stigma faced by people with these illnesses and the power of collaborative work to build change.

A farmer from the Isle of Man says his ME diagnosis 'stole his childhood', after living with the debilitating illness since the age of 12.
itv.com/news/granada/2…

Together with Sian Leary of the World ME Alliance, our CEO, Sonya Chowdhury will be discussing the importance of global collaboration at the 1st International Conference on Clinical & Scientific Advances in #MECFS & #LongCovid later today🤝

Recordings available after the event.

We were delighted to see John McDonnell MP presenting himself as an Action for M.E. Parliamentary Champion in a Westminster Hall debate on Tues 26 March

We were also pleased to see Mims Davies (Minister for Disabled People, Health & Work) respond by agreeing to meet with us to discuss our concerns further.

Full Westminster Hall (with PIP covered from 16:30:00): ow.ly/6ucZ50R42PZ

#MECFS #MyalgicE #WestminsterHall #MENews

Our March Webinar video, audio and transcript are now available! Go to shorturl.at/kwzOR for an update on #DecodeME extension, project updates, next steps and a Q&A. #MECFS #pwME

*Call for diverse voices*

Sam Pearce, on behalf of the World ME Alliance, is looking for people with ME to represent our community in our #WorldMEDay 2024 #GlobalVoiceforME campaign in May.

DecodeME March Webinar - video, audio & transcript are now available to view: shorturl.at/kwzOR

Webinar hosted by Sonya Chowdhury, Prof Chris Ponting & Andy Devereux-Cooke.

Webinar covered an update on DecodeME’s extension, a project update, next steps for us & a Q&A.

Looking forward to seeing some of you there at our next DecodeME the ME/CFS Study webinar this afternoon #MyalgicEncephalomyelitis

Standing in solidarity w the long Covid community. Research indicates at least 50% of people with #LongCovid have symptoms that mirror #MyalgicEncephalomyelitis

Working together is critical to improve the lives of ppl with overlappying illnesses #LongCovid AwarenessDay

An article in The The Guardian today discusses the outdated treatment of #MECFS patients.

“From harmful ‘therapies’ to social services referrals, the notion that this illness is psychosomatic is having devastating effects. It’s the greatest medical scandal of the 21s century.'

Are you interested in running the 2024 TCS TCS London Marathon for Action for M.E. on Sunday 21 April?

Due to an injury, we have one space on Team Action for M.E.!

We are delighted to announce that on 1 April, we will be launching our new & FREE Young People’s Counselling Services, thanks to funding from The National Lottery Community Fund!

For more info & to sign up: actionforme.org.uk/free-yp-counse…

In politics.co.uk, John McDonnell MP calls on the Chancellor to consider the state of services for #pwME & the funding for research into its causes & treatment.

Further details & link to full article available on our website: actionforme.org.uk/news/john-mcdo…

#MECFS #MyalgicE