#ThereForME Update 32
A round-up of ME Awareness Month
We’re back! It’s been a while since our last update. If, like us, you’re struggling to keep up with the changing weather and could do with a distraction: fear not, we’ve got you covered. Today we’re bringing you the highlights from the busy month of May, including World ME Day, research announcements, and media appearances.
World ME Day
While we decided not to run a specific campaign for World ME Day this year, it was great to see our friends and partners flying the flag, with an emphasis on medical education and patient safety.
#MEActionUK ran a campaign under the slogan ‘NHS. Nothing – No One – Nowhere’, focusing on the need for NHS provision for people living with very severe ME.
Action for ME echoed the World ME Alliance’s focus on medical education in their World ME Day statement.
Many a Blue Sunday Tea Party for ME was held on 17 May. The event, founded by Anna Redshaw, has been running since 2013 and has raised over £140,000 for ME charities.
A big shoutout goes to Isaac Greer, whose Blue Sunday online concert for ME has raised close to £2,000 for research at the University of Edinburgh led by Professor Chris Ponting.
We’ve also had our eyes on some incredible community mobilisation in Germany, where advocates marked the day with marches and “lie-down” protests in 42 cities, organised by #LiegendDemo (liegend means “lying down” in German).
Progress in research
The UK government celebrated World ME Day by announcing an investment of £4.75 million for SequenceME. The research project brings together the University of Edinburgh, Action for ME, the European Bioinformatics Institute (EBI) and Oxford Nanopore Technologies to build on the previous DecodeME study and produce a genetic map of the illness. The project utilises the world’s largest and most deeply characterised ME research cohort, and could shed light on the biological causes of ME, enabling better treatment.
While the funding will be pivotal, some advocates were left asking: is that it? As carer and campaigner Rosie Barrett recently told BBC Radio Gloucestershire:
“Even when you look at how much the government has invested recently, it’s nothing compared to other illnesses [...] If you compare it to Parkinson’s or other chronic illnesses, the percentage of people who have ME is higher than any of those other illnesses, but the amount that is invested [in those others] is 20 times more.”
Certainly, with a total projected cost of £20 million, the government’s contribution to SequenceME leaves other stakeholders to pick up three quarters of the tab.
Keeping busy in May, Action for ME also launched the PRIME ME/CFS Research Involvement Hub, which will connect patients directly with research projects that are seeking input.
We’ve been keeping an eye on recent conferences, including the 2026 International ME/CFS Conference in Berlin (organised by the Charité group and the ME/CFS Research Foundation) and the 18th International ME Conference (#IIMEC18) (organised by Invest in ME Research). Topics covered included immune dysregulation, mitochondrial dysfunction, biomarkers, wearables, and specialised care for the severely affected.
ME and Long Covid in the media
It’s also been a busy time for media coverage. Our very own Oonagh appeared on Ready to Talk with Emma Barnett. She spoke about her own experiences of Long Covid and ME, while also spotlighting the devastating toll for those who are very severely affected:
“They’re in a darkened room, they can’t tolerate light or sound [...] some are even tube-fed. They’re so unwell, you almost can’t fathom it”
Our co-founder Karen spoke to the i Paper about her ongoing battle to secure funding for the spiralling costs of her husband James’ care. She explained the financial impact of caring for a loved one with very severe ME:
“Very severe ME is quite a unique condition in that there [are] effectively no NHS specialist services that are available for someone in James’s position.
So what that means is the very small number of specialists in the UK basically all work in the private sector, so on top of everything else we have to pay for private medical bills, private prescriptions and the biggest piece of the puzzle is the care funding side of it, which has been astronomical and far beyond the income we have.”
We were pleased to see BBC Morning Live respond to viewer complaints recently. In a previous segment, a TV doctor had described “chronic fatigue syndrome” as “the best way to describe the illness”. To correct the record, Dr Ranj explained that, rather than chronic tiredness, ME is a “very complex chronic condition”. He summarised its debilitating symptoms, including the hallmark characteristic post-exertional malaise (PEM). Kudos to the ME Association for providing the information for this later segment.
And that’s a wrap! We’ll see you next week.