Myalgic Encephalomyelitis

Jayne Kirkham Excerpts

Wednesday 19th November 2025 Westminster Hall

[Tessa Munt]

It is not only untenable, but completely absurd. In September 2024, on World Patient Safety Day, over 200 healthcare workers were so concerned about NHS care for ME, and particularly care for severe and very severe ME, that they wrote a letter to the Health Secretary calling for immediate action to save lives. That letter was sent 14 months ago. I am sorry to say that very little has changed since, and they did not receive a response.

[Jayne Kirkham (Truro and Falmouth) (Lab/Co-op)]

I want to quickly mention one of those 25% of people with ME who are severely affected: my constituent Alice. She cannot leave her room, and is scared to call for treatment in case she has to go into hospital: she has been into hospital twice, but people there are not sure how to treat her and they make it worse. I simply want to empathise on behalf of my constituents, one of whom is one of the very severe cases the hon. Lady is talking about.

[Tessa Munt]

Probably most of us have constituents in exactly the same situation. In just over a year, two prevention of future deaths reports have been issued related to severe ME. I have already referred to one of them, regarding the case of Maeve Boothby O’Neill; the other was on the case of Sarah Lewis. Neither report has yet resulted in satisfactory action. The risk of death, specifically from malnutrition, is real and ongoing.

Earlier today I spoke with Dr Binita Kane, a private sector clinician with a special interest in ME and long covid. She told me about the case of a 25-year-old woman, a medical student, who developed severe ME after a viral infection in 2018. The young woman has been in an acute NHS hospital for 17 months with nutritional failure and has deteriorated to the point that palliative care is being instituted. Her family is being prepared for the worst—it is dreadful. She has been disadvantaged not because of the individual clinical decisions, but because she suffers from a condition for which there is no safe or established service model. There have been multiple missed opportunities to prevent her condition progressing to this stage.

Sadly, that young woman is not alone. I have heard of many other cases today, and before today. What is being done to help patients like her? In the foreword to the final delivery plan, the Minister stated that

“tragically avoidable deaths of people with ME/CFS, in England…must become never events.”

However, the plan does not clearly set out what actions the Department will take to guarantee patient safety. No one is being held to account. The plan committed the DHSC and NHS England to

“explore whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS”.

I hope that the Secretary of State will do the right thing and commission that service, but it is frankly astonishing that the option of leaving this group of patients without specialist NHS care, as they are now, is even on the table.

I ask the Minister to clarify what progress has been made in commissioning such a service. That is not to mention that developing a new service from the ground up is, at best, a medium-term solution. It may take years. It is astonishing that no interim solution has been proposed to ensure that patients with very severe ME, whose lives are at risk right now across the country, do not become tomorrow’s mortality statistics. How many more preventable deaths will it take? I ask the Minister to commit to work with groups such as #ThereForME to rectify the situation immediately, for example by convening a national advisory group to advise in these cases and by undertaking a full review of the lessons learned from ME deaths. Will the Minister clarify what data is being collected to better understand the number of those with ME who are affected by life-threatening complications?

The third area on which I would like to see the Government do much more is accelerating ME research. I spoke earlier about the need for investment in research and improving healthcare. For many patients, biomedical research represents their best hope of regaining their former life, yet the condition has historically received very low levels of research funding from the UK Government.

Based on parliamentary answers and official announcements, I estimate that around £10 million has been invested in ME research over the past 12 years. To put that figure into context, on the current numbers that is about 60p per person living with ME per year. Four times as much was spent on a helicopter for the former Prime Minister as has been spent on ME. We spent £125 million—12 times as much—on a bat tunnel for HS2. We spent £10 billion—about 1,000 times as much—on personal protective equipment that turned out to be unusable. Money talks, and the record of the past decade makes it clear to people with ME that their collective futures have been valued by successive Governments at astonishingly little.