Adam

New Trailer for the #MECFS Scandal Explainer Video. It highlights the stigma, abuse, bad science, and harm in the treatment of #MECFS, which has been described by George Monbiot as the #GreatestMedicalScandal of the 21st century.

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.

On S4ME, people pointed out that the PRIME project was due to efforts by Prof. Chris Ponting and his team. So it wasn't really an initiative taken by the government to support ME/CFS research. Source: s4me.info/threads/uk-gov…

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.”

Article in The Times - @KarenLHargrave - “This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments.” archive.ph/2025.07.21-231…

Karen Hargrave - @KarenLHargrave on BBC The World at One talking about her husband, James with severe #MECFS and the new government delivery plan which lacks any concrete tangible solutions, also includes a representative from BACME. youtu.be/R6AReGLoy4o?si…

Full article in the Times My daughter died from ME. This new plan fails her and others like her - Maeve died at 27 from severe myalgic encephalomyelitis. What’s been published after years of waiting is little more than warm words archive.ph/2025.07.21-231…

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.” youtu.be/wu21bQ6GEg4?si…

1) 🇬🇧 In the UK, the delivery plan for ME/CFS has finally been published. Here's what it says about scientific research on ME/CFS...

5 Live Breakfast segment on the UK government's new #MECFS Delivery Plan (9 mins) Interview with Sarah Boothby “There is no expertise anywhere within the NHS and this plan is not going to provide any.” youtu.be/myisnymUcC0?si…

Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. The plan changes nothing now. “There are no commissioned services, so clinicians can’t practice this medicine within it. That forces both doctors and patients into the private sector.”

Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. There is no commitment to a new service for severe ME. “If Maeve were still alive now, this plan doesn't actually mean anything would have changed and that will be very disappointing to people.”

Clip of Sarah Boothby speaking on BBC Breakfast "It’s a lot lot more than chronic fatigue. ME affects every part of the body and while people talk about it about relapsing and remitting the recovery rate from me is so low it’s hardly measurable”

Sarah Boothby on the BBC Breakfast segment about the new delivery plan "The way Maeve was treated while she was in hospital was she was constantly being referred to psychiatric services because the conception has been that ME is a mental illness. It isn't a mental illness."