A letter for your MP

Popping my head back in from my travels

Hi everyone!

I’ve been taking a break from publishing on here as I travel through South America. I’m now in the final leg of my trip, watching the World Cup in Mexico City, and I’ll be posting again when I’m home. Hopefully, football won’t be far behind me. (Football fans and English people will know what I mean!)

Before then, I’ve got something to share that I hope will be helpful. We are approaching one year since the UK government published its Final Delivery Plan for ME. UK patients and advocates will know how disappointing it has been so far. But we must keep up the momentum, so I have written a letter template, shared below, that UK advocates can use to write to their MPs. It outlines the plan’s failure and asks MPs to get involved.

Photo by Kate Macate on Unsplash

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Dear [Name of MP],

I am writing to express my dismay at the UK government’s delivery plan for ME/CFS and the inaction since its publication. Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, is a complex chronic condition. People with ME experience a range of debilitating symptoms, including extreme fatigue and cognitive dysfunction, after minor physical, mental, or emotional exertion. Flare-ups can last days, weeks, or months, and severely affected patients are housebound or bedbound. Some studies suggest that almost half of Long COVID patients meet diagnostic criteria for ME.

The publication of the Final Delivery Plan (FDP) was intended to take a year, but instead took three. When the government eventually published it in July 2025, it fell far short of the patient community’s expectations, with very few actionable commitments. One year on, it has failed to improve care or professional understanding, and there remains no ringfenced research funding.

The plan included a pledge to ‘explore whether a specialised service should be prescribed’ for people with very severe ME/CFS. They lie bedbound in pitch-black, silent rooms 24/7, and some require hospitalisation and tube-feeding. However, there remains no NHS care pathway, putting them at risk of further deterioration and even death. In March, nine months after the publication of the FDP, the government announced that it had postponed discussions on this specialised service until at least April 2027. This demonstrates a disregard for patients currently in desperate need.

[Include your own experience]

The delivery plan was a golden opportunity to reverse decades of mistreatment, neglect and dismissal. But so far, the government has continued to ignore the needs of people with ME. However, it can still change course. I urge you to join a growing number of MPs in becoming a parliamentary champion for our community, starting by pressing the government to implement the plan’s recommendations without further delay.

I look forward to hearing from you.

Yours sincerely,

[Your Name]

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That’s all for now!