Irish ME/CFS Association

Thanks very much to Joe Finnegan & team for today's 25-minute segment on ME that we were very pleased with. A recording is available here northernsound.ie/podcasts/the-j… #MEcfs #CFS #PwME 1/

COVID, over 2.5 million deaths prevented worldwide thanks to vaccines. One life saved for every 5,400 doses administered Vaccines have prevented the loss of 14.8 million years of life worldwide. eurekalert.org/news-releases/…?

2/ A number of people in the comments on my FB page have mentioned using a collapsible (lightweight) stool #MyalgicEncephalomyelitis #spoonie

"@NHSuk must take measures to stop Dill deteriorating" @AshleyDalton_MP @wesstreeting severely ill #pwME are still being forced to petition to get the care they urgently need & are entitled to. Please sign & share ✍️🔁 chng.it/vXCgqMW7WF

OK. I'm looking at the Final Delivery Plan (FDP) now: gov.uk/government/pub… I'm going to throw out random thoughts in this thread...

Highlights from Dr Charles Shepherd’s (@MEAssociation) interview with BBC Scotland on the new #MECFS delivery plan — clip covers what ME is, key symptoms, how many are affected, & why the figure is likely much higher, as many with #LongCovid meet the criteria/diagnosed with ME.

Clip from BBC Look North (3 mins) Alison Eastwood was diagnosed with Chronic Fatigue Syndrome in 2016. She has now been diagnosed with sleep apnoea and says using a CPAP machine has been life-changing — she now rarely needs to use her wheelchair. youtu.be/PX4aJVT7nQw?si…

Sean O’Neill on Times Radio talking about the new government delivery plan for ME/CFS “I’ve never seen a plan that lacks detailed quite such as this. I think it you couldn’t really call it a plan at all, it’s a kind of wish list.”

This write up from @Channel4News is worth a look - more on @BentonNick18437’s story, who has done such an awesome job speaking out 💪

Dr Charles Shepherd (@MEAssociation ) and Janet Sylvester (@meactionscot ) spoke to BBC Radio Scotland about the government’s new ME/CFS delivery plan. youtu.be/FtRQe_EYxvA?si…

“The inquest found in its preparation was that there is no expertise anywhere within the NHS, and this plan is not going to provide any.” — Sarah Boothby, talking about the new ME/CFS delivery plan on BBC 5 Live Breakfast

“It is disappointing that there’s no dedicated funding, no ring-fenced [funding].” – Sajid Javid on the new #MECFS delivery plan. Clip from Channel 4 News, also featuring Dr Binita Kane (@BinitaKane) and Nick Benton (@BentonNick18437).

Dr & Public Health expert & #pwME LC Dr Alexis Gilbert @alexis___me has read the #ME Delivery Plan & created this thread on what the plan must include We need @AshleyDalton_MP @wesstreeting @DHSCgovuk to implement these recommendations if the plan is to be effective for #pwME 🧵

For the next few weeks I’ll share stories from my photo project about #MECFS Before Hillary became ill she was an entrepreneur, running companies, sponsoring motor racing, making music and living a full life. Updates on exhibition & book: tinyurl.com/58khuv8z #MEAwareness

I’ve spent 3 years photographing people with #MECFS, a condition I’ve lived with since 1987. 50 people. Invisible & incurable illness. The work shows at Oxo Tower in September. Updates & book info here: tinyurl.com/58khuv8z #InvisibleIllness #PhotographyForChange

Doctors are to be given training in better ways to diagnose and treat people with ME - as part of a long delayed action plan that's finally been published. The debilitating condition with a range of symptoms including severe exhaustion and constant pain, affects around 400,000…

“We didn’t even see his eyes for over a year.” “It was like dealing with someone almost in a coma.” Clip from Channel 4 News: Nick Benton (@BentonNick18437) and his family on life with severe #MECFS — as the government finally releases its delivery plan.

Someone asked me to do a short piece on #MEcfs #c4news

Channel 4 News segment (5 mins) on the new government delivery plan for #MECFS. Interviews with Dr @BinitaKane, Sajid Javid and Nick Benton a patient and his family. youtu.be/1sYD5iBXw8k?si…

“I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support” Our co-founder @KarenLHargrave on Radio 4 WATO 👇 (Recording via @ABrokenBattery)

Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”