People with ME have been neglected by the government and society for too long
The government's new delivery plan for ME doesn't include funding. Now we're fighting back to demand fairer funding.
I have been ill since I was nine. I am largely housebound and I’ve had periods of being bedbound. There has not been a day in the last decade where I have been free from bone-crushing fatigue and pain. At times, I lost access to my education. I have had to fight for care and to be listened to by doctors. I lost my teenage years to Myalgic Encephalomyelitis (ME).
Despite three years of delays hampering the publication of a promised cross-government delivery plan on ME/Chronic Fatigue Syndrome (CFS), it is finally due to be published by the end of March this year, offering hope to thousands like me. However, there’s a catch – there will be no additional funding.
ME/CFS is a chronic, fluctuating, neurological disease that affects an estimated 1.3 million people in the UK. Symptoms include debilitating fatigue, pain, brain fog, sleep disturbances, and post-exertional malaise. Roughly 25 per cent of people with ME have Severe ME and are bedbound or housebound, often isolated in darkened rooms.
ME can be fatal and the recent inquest into the death of Maeve Boothby O’Neill, who died aged 27 from malnutrition due to Severe ME, highlighted inadequate NHS care for people with the condition.
Despite the devastating impacts of this illness, Ashley Dalton, minister for public health, has recently confirmed “there are currently no plans to allocate additional funding towards the myalgic encephalomyelitis/chronic fatigue final delivery plan.”
This is especially disappointing as the interim delivery plan, published in December 2024, stated that “there has been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden.”
With no additional funding how can this be a delivery plan at all?
ME is grossly underfunded. As of May 2024, just £8.05 million had been spent on ME research in total over the previous 10 years. To put this into context, if this were equitable to the disease burden of other illnesses, ME health research should have been receiving £18.5 million annually, according to Action for ME,
The government claims it wants to help people with disabilities and chronic illnesses get back into work and off benefits, but how will this become a possibility for people with ME without adequate funding into biomedical research for a cure, treatment or even a reliable diagnostic test?
The ME community has been neglected by the government, healthcare system and society for far too long. But now this group is fighting back in an accessible way: social media.
Karen Hargrave, co-founder of #ThereForME, a patient and carer-led campaign, said the delivery plan is an opportunity for the government “to make some commitments and clear steps towards improving care, funding research and getting people the treatment that they deserve.
“The plan has these top-level ambitions […] and the obvious question is, how do you achieve any of that without some level of additional funding behind it?”
In response to the lack of funding, #ThereForME started a social media movement calling for £20 million behind the plan annually for five years. Karen, who has ME and is a carer to her husband, James, who has Very Severe ME, says that, in terms of overall government spending, they are talking about “relatively modest sums of money that could do an enormous amount of good for people with ME and give us much-needed hope for the future”.
The beauty of the campaign is its simplicity and accessibility: post a video of yourself calling on the government to #FundThePlan. Videos posted so far are from patients, carers and allies and include people telling their stories to the camera, written accounts of life with ME, and shots from bed with a voiceover. Many tell their stories of how much they have lost to the disease.
Karen has hope there is still time for the government to invest in the plan: “The delivery plan for ME, it's not just a government strategy or a boring piece of paper, it is about people's lives and their futures. What people are doing is asking the government to invest in us and to choose to spend a relatively modest amount of money on helping us get back to our lives again.”
About the author: Tiger-Lily Snowdon is a freelance writer and student with lived experience of chronic illness and disability. She has an interest in disability rights, gender equality and human rights. She has previously been published in The Guardian, The i Paper and Shout Out UK.
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